Hi Lenor,

I went into hospital in April for over 5 weeks after my lungs collapse followed by a hemorrhage, I just came back home last week. While in hospital, I agreed to Plasma Pheresis. So far, so good, my CK level came down from over 7000 to 194. The best I've felt in over a year! Everyday I gave been much stronger. I'm coming off steroids and staying on Plaquenil and Cyclophosphomide (IV) only because they doctors are still monitoring me to see if Plasma Pheresis will completely cure the autoimmune disease. By the way, the doctors decided that I had lupus with a polymyositis/dermatomyositis cross over.

Will keep you and all posted. Perhaps Plasma Pheresis is an answer for some of us walking this journey.
http://autoimmuneillness.blogspot.com/2011/05/back-again.html
http://autoimmuneillness.blogspot.com/2011/06/sustainable-healing.html

Keep the good fight of faith,
TK aka Giraffe

June 1st, 2011

I found it by accident in the internet and it really made me feel better after reading your story.
I have been dealing with Polymiositis for about 5 years although my muscle biopsy was negative everything else is awful Last month my CPK levels reached 7000 so on the same meds you took it went down to 3500 I feel sick 24/7 with the side effects of Pred. and imuran on the top of that I take blood thinners. Not even mention my bruisng Just wanted to THANK U for lifting my spirits with this awful disease. I do work and sometimes I do not even know how i make it thru the day.

I am hoping you are feeling better. I was not able to find a support group where I live (California )

If you have a chance i would love to hear from you

Best wishes Grace

May 29th, 2011

Lenor:  I too, have PF and PM and Raynauds, Sjorgrens, IC, psoriosis-but, like you, I am going on with my life!  I am in remission but continue to take imuran an prednisone (7 1/2 ) gms. per day.  I started working out with a trainer 1 yr. ago and have started ZUMBA classes.  For everyone reading your story and this guest book entry-Get off of your duff and stop feeling sorry for yourself!!  Live, while you are still in this world!!  Discover an outlet-travel, get in a support group.

March 18th, 2011

Hi Lenor,

I first signed your guest book in July of 2008. I was diagnosed with PM and PF, and was very scared.  I was told by more than one doctor that my prognosis was poor because of the PF.  Every website I went to was not pleasant, just as you indicated, 3-5 years or a lung transplant.  Once I started losing muscle weight (35 lbs that I didn't have to lose), and all my strength, it only emphasized my fear.  When I stumbled on your website, I was amazed to read your story.  I read it every month to give me the faith I needed to get through this disease.  I actually believed I would follow the same path you did, and overcome the illness.  I'm happy to say today I have gained back all my muscle, my CKs have been normal for quite some time, and my lungs are great.  And better yet, I'm finally off Prednisone.

They started me on Cellcept and Prednisone, and then changed to Imuran and Prednisone once my CKs were in normal range.  I'm now only on Imuran and Plaquenil, and living a very normal and very happy life.

Thank you so much for giving me something to hang on to, when there wasn't anything else out there that was positive.  You have no idea how much help it was to me.

Joyce

February 3rd, 2011

I want to wish you and your husband a very Happy 2011. There are many ways in which I can relate to you. The most important ones being I also a female now 36 years old diagnosed with PM and ILD at 29y. One year before I turned 30 life changed all of a sudden and will never be the same again. This has been an quite a journey as you call it. I love your website and your pictures are great. You are a really photogenic and beautiful woman. I cannot believe your husband is past 50y. He looks so young. I started doing yoga and taiji and felt wonderful for a while too. I am from India and ayurveda attracted me too, I tried the oil massage one day, it was relaxing. Thanks for updating your website so religiously. It keep my morale high. When I read about you losing hair I can remember my hair fall. It falls off in bunches some times then slows down. I love to travel that is what keeps me going. Take care..more later

January 17th, 2011

Hello Lenor!

I`ve surffed in to your homepages by accident and all of a sudden I`ve found out there was a lot of coincidences!

Well first: I am a Shar-Pei breeder in Finland.  Second: My kennel name is Lenor`s due to very first Shar-Pei dog I`ve met in Finland. (The breed was forbidden in Finland till 1997). It was a stud called Lenor. And it is a foundation of my Shar-Pei breeding.

Third: I have been ill since 2006 but no specific diagnosis has been given. I`ve taken painkillers, cortisone injections to my knees and antibiotics for my high inflammatory prestige that never goes on a normal level.

Doctor`s have not found any reason for my symptoms. Actually one doctor suggested me to see a shrink! I started to think that maybe I should, for now I also have difficulties to swallow.

Reading your homepages made me think THAT MAYBE I HAVE THIS POLYMYOSITIS? At least I will ask doctors to test me for it.

So Thank you so much for your homepages! And I`ll let you know what was founded. Greetings: R-L. A.

November 24, 2010

Thank you for your testimoney and strength. You mentioned that you had mold removed from your hosue. I was living in an apartment with mold on the deck and really heavy in the apt beneath me,.I did not become sick until after I moved ther. Coincidence? Another lady who is a sister to a friend of mine also became ill after going to Puerto Rico on a work detail for several months and stayed in a hotel with mold. Has anyone heard of any connection with this? I had became ill last November and was just diagnosed in September officially.

November 6, 2010

Hi Lenor,

My name is Jennifer and I am 37 years old. Your site is wonderful! One thing I see when I look at your pictures,  is that you're enjoying each day, that is wonderful!  I too live each day like that! POSITIVE attitude has helped me get through my journey.  Some days are difficult as we both know, but I am so glad you are feeling good. :) 

It was a long and frustrating road for me,.When I was 12 years old which was 1985,  I remember being EXTREMELY tired, no energy, and missing a lot of school.  The pain started to get so bad my legs would just give out. I remember my parents having a van and not even being able to step up inside.  As days went by I got weaker and weaker, at this point, my parents were very concerened. I then went to my family dr. Getting blood test after blood test, unable to lift my arms because the pain was so unbearable.   The  pain in my legs was so bad I would cry, not being able to get out of bed. 

I lived in New Jersey all my life.  My doctors are out of Hackensack.   Dr. Demauro, was  determined to find out was this dibilitating disease was.  Very troubled by my CPK levels, which were off the charts, one of the specialist he spoke with in NYC said:  "those levels are as though someone who got hit by a mack truck!!!"  I remember him telling me that in his office. That Dr. then asked, is she going to make it?  He thought I was in the hospital.  My Dr. said she is at home but very very weak.  A wheelchair was going to be the next step for me.  He carried my file with him for months trying to pin point exactly  what this was.

They thought MS, but testing  came up negative.   I then went through having a muscle biopsy, specimen biopsy, and a bone biopsy. All were negative.  Finally the magic test came...  an EMG....very painfull,  but one I had to get done. After about 5 months of these tests I was finally  diagnosed with PM.   I was  referred to Dr, Seibold, a Rheumatologist from Robert Wood Johnson Hospital in New Brunswick.  He immediately put  me on high doses of Prednisone. I was a guinney pig for the fact that I was the first patient so young having PM. Good part if there is one to having PM was that because I was so young, there was a possiblility I could go into remission, and being so young, handle all the meds better.  My dr also told me that PM was primarily diagnosed in elderly people, that''s why it was NOT high on the list .  He had told me at the time that myself and another boy who lived in Washington DC was also diagnosed with the disease.   Every three months my mom would take me to Dr. seibold  and I would get my blood work  done.  Feeling relief after being on the Prednisone, 80 MG, I was also put  on cyclosporine.  I gained alot of  weight and started to have digestive problems.  He also put me on Caltrate to coat my stomach.

I was asked by my Rheumatoligist if I would participate in a seminar , where about 50 doctors from different states flew in and if I could talk about what I was feeling.  I did it, very nervous, I wore a bathing suit so they could see the condition I was in.  He asked to lift my arms up, then he stood in back of me and said, ok, don't let me push them down, they went right down. My muscles were destroyed.  At that point I had just started the Pred.  I had also just got  a muscle biopsy done on my left arm, so there was a huge gash they cut and stiched me up.  Well this was about 45 minutes into the seminar and when he put pressure on my arms, the stiches busted open., that was the end of that, they wheeled me into the ER and stiched me back up.  Urrgh!!! Well I thought at least the doctors got the information they needed.

My face was so swollen you couldn't see my nose.  My cheeks were swelled out that much from the Predisone.  Was not feeling good about myself at all.  I had to be home schooled for a while until I could go ahead and had the strentgh to fuction with my daily routine. From 12 to 23, always still getting blood work to check my levels which would go up and down, then finally getting  wiened off, going from every 3 months for blood work to six. At age 24 Dr. Seibold had given me wonderful news.  The PM was in remission.:)  Not on any meds I was feeling great. 

Going to the dr. now once a year for blood work.  All levels were good.  I was dating my then boyfriend now husband, Dan.  He is great and very supportive.  We got married in 1998.  No children. Go figure our favorite place is Disneyworld.  LOL..  In 2004, on a Saturday afternoon, I was feeling alot of pain in my chest.  Dan drove me to the ER.  All my vitals were ok.  I was referred to Dr.Orr, who is my Pulomonologist.  I had to get a broncoscopy done to determine what actvivity was going on.  Tests came back, I had developed ILD.. Interstittial Lung Disease, do to the PM.   What was happening was My lungs are scarred and my right lung is partially collapsed, so I can never get a full breathe.  I have wheezing and dry cough.  With the PM still in remisson, I would now go for PFT tests, I also had a  Gallium scan done, and CT with and w/o contrast.  Pieces of scar tissue break off causing pain.  My breathing capacity has weakened.  I also have High Blood Pressure. I am on Toprol XL.  I take my BP twice a week.

He had given me oxycodone for the pain, but I don't take them.  I take Alieve.  In 2007 I had gone for blood work like normal  my dr. was seeing activity.  Not saying what he referred me to a Rhemuetologist.  By the way, my original Dr., Dr. Demauro passed away from a very aggresive prostate cancer. I then went to his partner. Dr. Prins.  I am now seeing a rhuemetologist. I was diagnosed with Lupus in 2007.  It's called an overlap.  My meds right now are Nexium, Plaquinil, Toprol XL and Procardia. xanax as needed and Flexeril as needed. 

The Lupus flare ups are painful and I have noticed its worse when I ovulate and before my period.  My whole body gets inflammed.  Can' t even touch it. I also have rhenaud's, so the cirrculation is painful also.  He gave me Flexeril, I take when needed at night.   I get aniexty only I would say the past year and it's the lungs I worry about. I take half Xanax when the aniexty gets bad.  I have also  had great support, family and friends.  

I have an Appt. next Friday with the Rhemetologist.  I go to him every six months and get blood work done.  I go to my pulmonologist once a year.  There has been no movement in the ILD since I was diagnosed with it back in 2004.  He compares tests from the previous year, CT scans, PFT's.  I go to the heart Dr. Once a year also, I get an echo done.  They were worried about Pulmonary Hypertension, but thank goodness I don't have.  I would really like to find a holistic dr. I started doing some research on that. 

I joined a gym and I have a trainer.  I read that Yoga has helped your breathing.  That made me smile.  I can definately relate to your problems.  As far as supplements, I take Flaxseed oil, vitamin D, and Isotonix. I feel good, but I NEED to work on my breathing. My diet is fruits and veggies, grilled chix etc. Salads. My fav drink is Bom Dia Blueberry Acai.

This is the first time I am putting my journey into words.  I love your site, and I hope you keep posting.  This is my email if you would like to chat.

Take Care, Jen

April 21, 2010

Wow Lenor!

Your site is amazing.  I am up late researching more PM sites for a book my husband and I are writing about the illness.  My husband, Chris Taft, was diagnosed with PM in 2006 at 21 as an active NBA player.  Hard to believe it, recently he started Rutixan and was also diagnosed with PF.  But he is doing outstanding!  He is trying to get back in the NBA this summer and play again at 25.  Your journey reminds me so much of ours I am so happy that you shared your story.  I hope we can keep in touch.

Cheers,

Dana Taft

April 11, 2010

Hello Lenor

I have recently been diagnosed with polymyositits. Just out of the hospital about 3 weeks ago. There's so little information out there about this disorder and real people living with it-- and doing well. I'm glad to have found this site and it is very inspiring to read how you are living a wonderful life--- and I love your travels! Thank you for sharing so much of yourself!

My condition came on about 6 months and no one could quite figure out why I had all these vague complaints. I thought I had a bronchitis or throat infection at first. Then my swallowing became impaired, I felt exhausted doing normal things and I started to lose weight. FInally it seemed all symptoms were there, I couldn't walk very far and I was out of breath, couldn't raise my arms to wash my hair. About 3 weeks ago, I had an appointment to see an rheumatologist, she took one look at me and admitted to the ER straight from her office. My breathing got really bad because my diaphragm had been weakened they said, I was holding a lot of Co2. My CPK was 2200. I was in the ICU on mega doses IV steriods for a few days. I woke up on day 2 feeling better already. I was in the hospital about 5 days while they ran all the other diagnostic test to confirm or exclude what I had. This disorder takes a long time to pin point--especially when you have to wait on a muscle biopsy! But it was a relief to know in the end and now I can focus on treatment and containing it and getting back to my life. I was really much sicker than I knew.

I am a pretty active person and I work out a lot and always been pretty solid. So the most shocking thing is all the weight and muscle that I've lost. It's just gone. But I can walk and i'm not out of breath anymore-- so I'm grateful for that. It's strange that I have no power behind my muscles but i'm optimistic I'll get strength back as I start physical therapy and the steroids start to come down.

They have me on 60 mg to start and my Drs debating whether it will be methotrexate or imuran for me-- since I have a liver autoimmune disease too. We'll start on that this week. It's amazing how much better I feel than a month ago. Yes the drugs will have side effects but at this point, I really don't care because I'm alive and I know we'll get it under control. One day at a time.

Keep posting and i'll keep reading. Best wishes to you.

Melinda G - Chicago

April 04, 2010

I was diagnosed in November of 2009 with polymyositis.  My ck level was 12000 and i could barely move, swallow and the pain was beginning to be to much to bear. Fortunatly I was diagnosed early and put on predisone which seemed to do nothing.  After a few weeks I called my doctor and told him i was still in pain and not moving any better and he then started me on Cellcept.  This seemed to be my miracle drug.  Every day I could feel my arms and legs move a little each day, it may have only been a qtr of an inch each day but each day was a positive difference.  After about 6 weeks my strength and movement retured. It is now April 2010 and I am doing well. Dr weaning me off predisone but still taking 3000mg of cellcept each day.  My ck level has gone down to a normal level.  Still have some trouble swallowing certain foods but eating everything I want and do get tired more easily. In beginning I could only eat cereal and cheetos.  Lost 10 lbs the first month of illness but have put it back on.  Thank you for your website as this disease is not something I had ever heard of. 

April 03, 2010

Dear Lenor:

I want to thank you for your wonderful web site and all the incredibly helpful information you provide.  Your story really is an inspiration, and I'm so glad for you and encouraged for me to hear that you are off the prednisone and other meds except for Rituxan and feeling well.  I am 46 years old and I was diagnosed about 2 and a half years ago with dermatomyositis and a positive jo-1 antibody syndrome which is a marker for the interstitial lung disease/pulmonary fibrosis, and the various doctors I go to seem to think that I won't get a remission if it hasn't happened by now, but your story tells me that it is still possible.  I have been fortunate in that the disease never really affected my muscles in a major way except in the very beginning, but it has affected my lungs in a major way and, as of about a year ago, I need oxygen to sleep at night, to fly and also to exercise.  I blew up on the prednisone and haven't really been able to get the weight off yet, but I'm trying.  (I used to be a size 6 so that's been very frustrating for me)  I've tried a few of the same meds as you (Imuran, Cytoxan, IVIG and I'm currently taking Cellcept).  I live in New York City and have a weekend house on the East End of Long Island and I find that I feel better and am able to wean off some of the prednisone once the weather gets warm.  Like you, I have been able to maintain a very busy career with a fair amount of travel (I am a trial lawyer) and work has been a real savior for me mentally although physically demanding at times.  Lately I've been feeling somewhat depressed, but reading about all your ups and downs and how you've managed to focus on staying healthy and keeping such a positive attitude gives me real hope.  I can tell that you are a very special person and a kind spirit and I truly thank you for all of the inspiration you have given me.

All the Best, Alyson

March 15, 2010

Hi Lenor,

I'm from Québec city, Canada . My english is very bad.

Your story is a lot like mine. I discovered that am not alone to fight this descease.

I have polymyositis and PF since fall 2006. I try Imuran and cellcept without sucess to quit prednisone. My CPK's are now stable (arround 100) since july 2008, But I'm taking a lot of prednisonem (about 40 mg per day).

I will have my first perfusion of Rituxan in few weeks. Your story gave me a lot of hope ans courage to try again to quit prednisone.

Thanks

Jean Samson  

March 6, 2010

Lenor,

I just found and read through your story! Wow! Thank you for posting this for others to read and glean from. I was just diagnosed with polymyositis in September of last year but have been dealing with PM probably longer than that. My doctor is going to try to get me going on Rituxan in a few weeks--hope he can get it for free. I have tried prednisone, methotrexate and arava but they're not doing it. Thank you for sharing your life, your challenges, and victories. You have shared so much of your life and you've given me hope that I will be able to do what I used to again--within reason and of course according to my age of almost 48 years. Bless you Lenor,

Bridget Lathrop Denver, Colorado

Feburay 17, 2010

Hi Lenor

You are an ANGEL! Thank you for sharing the info on your conditions.
I, too have polymiositis, insterstitial lung disease and raynaud's. It took quite a while to get an accurate diagnosis!
After reading info on your website, I am so proud of your great attitude and your fantastic progress!
It's wonderful to know I am not the only one with these conditions!

Keep up the good work!

Best Regards

Phil Preston
Asheville, NC

October 21, 2009

Hello All! 
 
I'm so happy to have found this page. I was diagnosed with Polymyositis with Lung Involvement 2 years ago. Currently, I'm taking Cellcept 3000mg and 20 mg Prednisone daily (just started Cellcept 2 weeks ago...
the prednisone has gone up and down over the years). My friend is getting married in Riviera Maya, Mexico in 2 weeks and I had planned on going for 4 days, but everywhere I look says that people that are immunocompromised and taking Cellcept should NOT travel. I dont know what to do and since I don't know any other people in my boat I don't know where to turn for advice. My doc says its a risk but its my personal decision... really helpful. I'm only 30 years old and had planned on doing a lot of traveling in my life... never realized until now that it would even be an issue. 
 
What do you guys do? Do you travel abroad? What kind of precautions do you take? I feel pretty good right now except for the frequent cough and getting tired easily. I work in a hospital and have a very physical job. Aren't I at risk eveyday? Is this trip any different? 
 
The trip is less than 2 weeks away and I am absolutely torn over what to do. Please offer any opinions you can... I need to talk to people who are in my boat. 
 
Thanks!
Liz
iam217@aol.com 

October 4th, 2009

Dear Lenor, I was very happy to come across your website. I too have Polymyositis. I am 51 years old and have had it for the last 28 years. I had a disastrous reaction to the corticosteroids that were recommended to me and after that I looked to other systems of medicine like Homeopathy and herbal medicines for a cure, with no great success. I have recently come across a website of a person who cured himself of Multiple Sclerosis, an autoimmune disorder, with a very simple medicine - seafood ! His cure has apparently been reviewed by a number of top health researchers and medical professors from all round the world and he was invited to share his findings at a health conference in Geneva cosponsored by the World Health Organisation. He is confident that the seafood cure will work for practically all autoimmune disorders including Polymyositis. If his claims are true then, that is good news for all of us ! His web link is: www.truehealth.org/aheal.html

Cheers Vincent Figueiredo

August 21, 2009

my husband has had polymyositis for 7 years now. Your site was a blessing when he first got diagosed. Every step you went through, he has a couple of months after you. Fibrosis of ghe lung, the allergies. My husbands is food alergery, swells up, cant breathe.  This month is the first month he has differed from you. He was just put on oxygen. Having a real hard time breathing and doing anything. wanted to let you kow thanks again for the site. It has helped me understand what would come next. if anyone has gotten to the point of oxygen, I would love to hear from you. my name is jessica heintz.

August 11, 2009

Hi Lenor,

My name is Krystine. My Husband Peter has been diagnosed with Polymyositis
Jo-1 antibody syndrome with Institional Lung disease as of 3 weeks ago. He is due to be released from hospital today after a 4 week stay and a 7 weeks illness. As I write we are awaiting the delivery of an oxygen machine so as I can ring the hospital and say set him up to leave.

We live in Australia and Pete is the 13th case to be diagnosed. I have needless to say been researching and stumbled across your site. It has really helped me. I think I know it backwards. I have laughed with you and cried with you. I am like you wanting to know how, what, why, who all the things that can be done to assist Pete. He really does not want to know whats going on. He wants to be told what pill to have, what exercise to do and then he'll get better.

In conjunction with the variety of medical articles your site has allowed me to maintain optimism. We are only beginning our journey. I am sure with many up's and downs to follow. I look forward in continuing your journey with you now that you are "med" free and hope too Pete will be celebrating that day with a healthy long life ahead to live.

Thanks Lenor

Regards Krystine

August 18, 2008

Hi Lenor,

Your story was very encouraging to me.

I've just been diagnosed with both Pulmonary Fibrosis and Polymyositis.  My CK's weren't as high as yours, they are right at 4,000.  They found honeycombing on my High Res CT Scan.  My thigh MRI showed that my muscles are lit up with inflammation, and I'm having a muscle biopsy on Tuesday.  They were going to do an open lung biopsy, but felt it won't be needed if the muscle biopsy comes back confirmed.  I still don't understand this.

I have been feeling very down and scared.  I just spoke to someone that was diagnosed a year ago with PF and had a lung transplant two months ago.  It seems like it's hard to know how quick it progresses.  I'm still trying to understand the link the two diseases have.

It was so nice to see you are able to live a normal life.  I've been told I can't fly because of my low oxygen level, but I'm hopeful by reading your story that will change.  Everything I've seen or read about PF has been discouraging, so this is the first encouraging thing I've read.

I was surprised to see that you considered PF the secondary disease, since PF is the fatal disease.  Even though I have not started treatment (they are waiting until Tuesday and will start immediately), and I can barely get around from the muscle weakness, I was told they can control the Polymyositis, but the PF is the disease that would affect my life span.  The PF was diagnosed first, and the Polymyositis was just recently diagnosed.  In two weeks, my muscles have deteriorated, so this it seems to be very aggressive.  I guess my journey is only beginning, and there is so much I don't understand.  But I just read about a young woman that has gone several years, and is living a normal life!!!!

I'm 45 years old, never smoked, and was healthy prior to this year.  I hope I can get to the point that I'm as positive as you are.

July 27, 2008

I enjoyed your site. I have been diagnosed with polymyositis/NSIF (nonspecific interstitial pneumonia) since  Dec of 2004. My Doctors chose prednizone and a drug called Cellcept. At the high in 2005 I was taking 2000mg of Cellcept and 60mg of the prednizone. Every thing went well and was completely weaned off the prednizone and the lowest level of Cellcept was 1,000 mg/day by  2007. Fall of 2006  I got squamus cell carcinoma on my tongue, they say caused from taking the Cellcept it is still coming back. Now we have to deal with it with radiation. In April of 2008 the polymyositis came back with the NSIP. I ended up on 80mg/day prednizone and back up to 2000mg/day on the cellcept. As of May31,2008 now I can add prednizone induced diabetes, which we are controling with insulin. BEWARE OF PREDNIZONE. I guess I'm venting here. Thanks Cal

July 17, 2008

hi lenor, I have pm and have been reading your site for 1.5yrs now as it helps me out,,,, thankyou! I am in the process of having had an xray and ct scan and now have to see a respiratory specialist as it is possible that i have ild or pulmonary fibrosis or something similar? are they the same disease, the ild and pf? can i ask what exact things you had done to come to this diagnosis please? kind regards monique from australia

July 10, 2008

WOW!  This is kind of a relief.  Your story, Lenor, as well as the synopsis of your guests' experiences keeps me from feeling that my boyfriend and I are alone.  Obviously, I know that we are not alone... but you know what I mean.  He, my boyfriend, was diagnosed with Polymyositis in 1996 or 97 (before I knew him).  He only knew it by CPK values because he had no symptoms.  His normal body type is "muscle dense".  He's not a body builder or anything, it just genetic.  So, his "normal" cpk value of 1100 to 2500 never interfered with his life or lifestyle.  Had it not been for his acute renal failure, he would not have even known of his blood values.

When his transplanted kidney began to fail (in 2005) his CPK's rose to 6000 & 7000.  For a year he remained without symptoms.  Then he started to get the weakness.  Gradually from day to day, I have seen his muscles deteriorate to the point where he struggles to stand up, looks for handicap ramps to walk up rather than step up (once) from the curb to go into a building.  I literally do not know when he will fail to be able to go up the one flight of stairs to our apartment.  Yes, we are looking for a new residence!  The horrific thing is that he is now at 11,000 CPK!  And he can still stand!  He has tried several drugs (to no avail) and is now awaiting his second IVIG treatment.  (The hospital didn't want to provide outpatient infusion because they couldn't make enough money off of him.)  But his doctor fought and won.  The difficulty in drug treatments for him is that he is on dialysis and many of the drugs get washed out before they can get into his system.   I will communicate with any and all on this subject.  shyne_speaks@yahoo. com

April 20, 2008

Dear Lenor,

I reviewed your website after Kit's encouragement to do so.  As a physician who treats many women with chronic disease, I am amazed at your response and proactive energy.  I think we are given choices when we are diagnosed with an illness.  Many patients see themselves as a victim of a disease and live their lives with this mentality.  Others, although I see this much less frequently, see disease as an opportunity to look at their life and take a moment to stop and make changes.  You clearly have taken this course.  Bernie Siegel always refers to the joy of living as a function of the physiology of optimism.   He speaks of success and healing being about what we do with the time we are given and not how long we avoid death.   You are doing fantastic things with the time you are given! It is wonderful to see that you are focused on the big picture and appreciate each day as a gift.  I love that you continue to make quality of life a priority.  I wish more of my patients could understand this concept.   Your friends, animals and gardens are beautiful and thriving as a result of your cultivation.   All my best to you and I wish you many many more years of remission and quality of life. Mary

Sincerely, Mary E. Murray, M.D.

February 1, 2008

YOU ARE A GODSEND TO ME. I WAS DX WITH DERMATOMYOSITIS 14 YEARS AGO. AT THAT TIME MY ONLY CHILD WAS 3 YEARS OLD. I MADE A DEAL WITH GOD IF I COULD JUST SEE HIM OFF TO COLLEGE I WOULD BE BLESSED. I AM A LABOR AND DELIVERY NURSE AND IM 43. SINCE THE FIRST OF DECEMBER IVE HAD "THE FLARE" ONLY THIS TIME IVE HAD SO MUCH MUSCLE PAIN. I DONT FEEL LIKE I CAN SHARE MY FEARS WITH ANYONE. I HAVE BEEN MARRIED FOR 18 YEARS BUT MY HUSBAND AT THE AGE OF 45 YEARS OLD HAD OPEN HEART SURGERY AND I DONT WANT HIM TO WORRY. NEEDLESS TO SAY IVE DONE A LOT OF CRYING OVER THE LAST 2 WEEKS. I HAVE A NEW DOCTOR THAT IM NOT SURE HE REALLY KNOW WHAT TO DO WITH ME. IM ON METHOTREXATE AND IVIG AND YES I HAD TO BATTLE TO GET MY IVIG. SO I READ WHERE THEY MIGHT HAVE A NEW DRUG IN 2 YEARS. DO YOU KNOW THE NAME OF IT? IVE GOT A LOT MORE LIVING TO DO. I HOPE YOU ARE DOING WELL. THANK YOU TAMMIE MARTIN

January 25th, 2008

Hi Lenor,

Thanks for publishing the web journal, its really a boost see how active one can with despite the disease.  It really gives folks like myself a positive example.  I work full time and also travel & play music about 75 dates a year with my songwriter wife, and we're expecting a baby in April.  Thus far (since September, 2006 diagnosis) my dermatomyositis & pulmonary fibrosis hasn't been much of a factor in slowing us down, except I get superwinded playing racquetball or basketball. 

I've just gotten weaned off of prednisone and am taking 225 mg Imuran. I do need to learn more about these cpks, though—havent paid attention to what mine are…

Best of luck, we're pulling for you.

Cheers,  Jeff Vogelgesang & Jan Smith

Honeybirdmusic.com Charlottesville

January 8th, 2008

Hello Lenor,
My name is Lenora, so besides the polymyositis we have something else in common.
I was amazed by your battle with this horrible disease that has attacked us and seems to have taken over our lives, but I was so encouraged to hear that you are fighting it and not letting it control or consume you.
Before reading your journal I sat thinking whether I should continue to fight this disease or just let it ... After reading all that you have gone through, I thought how selfish of me to feel so bad for myself when I have not had to go through nearly as much as you have (at least not yet, I know it's coming). In my life I have tried to be a positive person always trying to find the good in things and always having a plan B or C, but it seems that since the loss of my mom to liver cancer, whom was a fighter and a positive spirit. I would fight with teeth and nails along with and for her with her sickness, but when she died I just don't have much of a desire to fight for myself. The last flare-up I had about three years ago she was the one to convince me to go back on the Prednisone (the drug that turns me into monster woman). The dosage was 60 mg because my cpk had gone up to 4,000. Prior to this my cpk had been normal for a year. I was determined to not go back on the drug even if it cast me my life, but my mom had just been diagnosed with cancer and I knew that she would need me to help her fight. Although she was a strong woman and was fighting the disease she needed a spokes person to handle the doctors and to look into treatments, that ultimately gave her a longer and higher level of quality of life. They originally gave her 6mo but she lived an extra 2.5 years and died at home with her dignity.
Anyway, I did not plan to write you to tell you all of this, but... In addition to letting you know how encouraging you have been to me, I wanted to ask you how you have managed to deal with the weight gain from the prednisone and how you were able to avoid the round face. You don't seamed to have the round face or look abnormal in any of the pictures on your website, but I've noticed that you have never come off the prednisone.
When I was first put on the prednisone in 1997 I went from a size 5 to a size 22 in 12 months. I gained so much weight that I was absolutely miserable to myself and others. I went into remission for a year, from 20002 to 2003, and at that time I was able to workout and loose wight and made it down to a size 8, but after that I had to go back up to 60mg and the weight piled on again. This time I maxed out at a size 18. I went into remission again, this time coming off of prednisone completely for two years, and I joined a gym and hired a weight trainer and I have been able to get down to a size 6 this time.
I am feeling the best that I have felt since I got sick. I am running 2.5 miles a day,weight training 4 times a week and I am feeling like a new person and my labs in August were in the low 200(ALMOST NORMAL). My Rheumatologist gave me a scare back in August when she found out that I was weight training and made me stop until she checked my cpk, but she was surprised to see that they had gone down over 300 from the last test, but she has not been very supportive with my exercising and loosing of weight. In fact she seemed disappointed during my recent visit this past Friday and made the comment that this is the first time she's seen me in 9 years that I have not had something to complain about. I tell you that I have been feeling like super woman. No muscle weakness, no tiredness, no pain.
It all is coming to a crash - to good to be true. After seeing my doc on Friday I had labs done and she called me this morning to tell me that my cpk has gone up from 255 in Aug to 1,700. I am so floored because I do not feel weak,tired, or any of the symptoms that I had all the other times. She now wants me to go on 10mg of prednisone for a month, but my initial thinking is that I feel good and I look good now and I know what this medication will do to me. And yes, vanity is taking a hold of me as well, I do not want to go back to looking like this hideous blown up prednisone monster woman.
So after all of this blabbering, I just wanted to know how do you keep your weight under control and also if you have looked into any holistic alternatives to prednisone. I have only ever been on methetrexate(10 2.5 mg pills once a week) and prednisone (she wants me to take 10mg once a day). Also, have you ever had CPK's this high and not had any symptoms of the disease. I'am also wondering if the Remicade and methetrexate would work without the prednisone. Also, the day before my labs I had been doing a lot of exercising and weight lifting (over 2hrs).
I apologize for going on so long, I'm just a little frustrated today after getting this news. Not only did she give me bad news but I had to hear it from my answering system and so I didn't even have a chance to speak to the doctor about her decision.
Thank you for taking the time to read this and for sharing your story with the rest of us.

December 24th, 2007

I have many of your conditions, just got them in different order.  I'll spare the story.  But the coughing attacks to the point of throwing up were resolved with use of nebulizer treatments when in those flare ups.  You didn't mention them so I did not know if you had tried it yet.

Thanks for your log, it helps to talk to others that understand.

Cris

December 12th, 2007

i Lenore, you are an inspiration beyond belief.  I have you as my screensaver so that I can see you each morning.....  You start off my day with motivation and drive to battle my PF. I was diagnosed on February 14th, 2006.   It is has been a journey with ups and downs but I am determined to fight this battle as hard as you have.....    I moved from Los Angeles to Rancho Mirage Calif. for a better quality of life.  I love it here!  Still working and taking care of my eighty-seven year old Mom.  Please keep me updated!  Happy Thanksgiving!  

Warm Regards,  Maria

October 18th, 2007

When I was 18, I developed polymyositis. I spent next year in and out of hospitals. Needless to say my life looked bleak. I was confined to a wheelchair and unable to feed myself as arms were locked at the elbows. I was 6 ft. tall and weighed about 115 lbs. soaking wet.  Doctors started me on 80 mg. a day of prednisone. I also drank enough Maalox to paint my home.

It took several years but the disease went into remission. God blessed me and I was able to get married, have a daughter, work as a police officer {where I earned awards as officer of the year 2 times} 

I now have been married 22 years, have 7 kids and 5 grandkids.  The disease still affects me but the secret is TAKE LIFE DAY BY DAY. NEVER GIVE UP. Greg T. Thames 

September 6th, 2007

I am overwhelmed at what you have gone through.  You have always told me how important your health is but I take it very much for granted.  You have inspired people around the world.  I had no idea this disease was so awful.  I complain about my back for God's sake. I wish you the very best.  Not only are you beautiful and smart but you are a darn good writer. much love Lou-Ann

August 12th, 2007

Hi Lenor -  my name is Kara - I was just diagnosed with Polymyositis.  I had an EMG done and am getting ready to have a muscle biopsy done.  My CPK numbers keep going up and down - the highest they have been is around 3000.  I actually have a lot less pain than before but I am still very tired.  Today - I almost passed out.  I am very tired, weak, a little sick feeling, very light headed and like I said - I almost passed out.  I am just trying to figure out if this is a "flare-up".  What were your "flare-ups" like.  I really do not want to do the treatment for Polymyositis - I think the side effects to the treatment is worse than the disease.  If you can e-mail me back I would appreciate it. Thank you. Kara

August 10th, 2007

Lenor

I am 33 and just beginning what may turn out to be a medical pain in the backside! I started out with a bad reaction to the PARVO virus. I hate saying that. Everyone asks, “Isn't that what dogs get?”. If one more person asks that, I think I will scream!

Without going through a whole bunch of details and all the doctor visits I will sum up. It is now suspected I have Sarcoidosis. And they suspect the Parvo as the cause (though of course they can't be certain). I have inflamed chest lymph nodes that don't seem to be decreasing in size. So, like you, I started doing research on the internet. I saw two of the things that can result from Sarcoidosis. They are Lymphoma and Pulmonary Fibrosis.

After reading what you have been through I must admit I am feeling a little more afraid than I did before. But, I'd rather be well-informed and afraid than complacent and un-informed. And you have educated me indeed. Thank you for sharing your story.

Also, from reading what you went through I see there are things I can do to help myself.  And that not all is lost of I do develop pulmonary fibrosis.

It has been awhile since you updated your site. So, I would also like an update. You don't have to go into detail (unless you want to). I would just like to know if you are still able to be active and if you are feeling better/worse/the same as your last update.

I hope all is well for you. J
-Regina Williams “Reggie”

August 8th, 2007

Hello Lenor,

At the present time, my husband and I are going through a very rough time.  He just had a lung biopsy that says he has Idiopathic Pulmonary Fibrosis, but we believe it might have been caused by an anti-biotic he took for 3 months called Macrodantin.  He successfully concluded his prostate cancer radiation treatments and now this awful problem happens.  His lung doctor said that he might only have about 6 months to live.  I am sure we need to get him to a clinic to begin some kind of treatment, but have to wait until the doctor gives the go ahead.  I am so glad you have gotten such good care and are doing so well.  I hope you have many more happy years with your husband....he seems like a keeper!!

Regards, Lois Rundle lrundle1022@aol.com  

August 2nd, 2007

Dear Lenor

Best wishes Javie & Alfia Dance

July 24th, 2007

Hi Lenor

My name is Julie and I live in Leicester, England, UK.  I'm so glad to have found your site as now you make me appear fairly normal!!!

I was diagnosed with PM in July 2006 at the age of 37.  I also have the anti Jo 1 antigen, therefore also unfortunate enough to have pulmonary fibrosis.  And I was also diagnosed with Raynaud's Phenomenom secondary to PM.  I never thought I would ever come across a person with all of my conditions!!!!

Thank you very much for your site.  Julie

July 24th, 2007

Hi Lenor,

My name is Monique! I am 32 years of age and have been diagnosed with pm since Jan 07!

I live in Australia and currently seeing a rheumatologist, and find it difficult to get much info with this disease.

I am taking prednisone and have upped and downed the doses for 6 months.

I have heard that the prospect of being pregnant with the disease could really play havoc and could poss. kill you... have you heard that at all, also, a man who I just contacted the other day who is in remission, is sterile, possibly from pm??

I know you said you didn't want children, but what has it posed on your abilities or anyone with PM possibilities?

Kindest regards Monique

July 15th, 2007

Lenor,

I'm so happy that your blood work came back normal this month, and that you've had another good month, as far as your symptoms and your ability to work and travel and see family. That's so important. I look forward to your monthly updates.

John

July 12th, 2007

Hi again Lenor,

So glad to see that you're doing better ! I just also wanted to say thanks for keeping us all up to date on your progress. It's one thing to do these entries when your not feeling well, but you haven't forgotten about the rest of us now that you're doing better .....and I just wanted to say thanks:) I do have one question for you though, if you could just find a sec to write me I would be eternally grateful. I am going to be starting Rituxan on July 17th....and for some reason I'm really nervous about this drug. It sounds so funny to me to say this, and I'm quite embarrassed actually. I mean I've done Prednisone, Imuran, Methotrexate injections and tablets, IVIG- 3 times, Cyclosporine, Enbrel injections and IV Remicade for the past 20 months......so for me to be freaking out over this new drug.... is odd to say the least. Anyway, I've taken enough of your time here, and I hope that your good health continues, and I hope to hear from you soon about the Rituxan.

Thanks in advance, Roseann

July 10th, 2007

Dear Madam,

I am very much thankful to you for your website, my wife is diagnosed with PM during Mar – 2006, she is under treatment for the past 18 months, with most of the drugs specified by you, but I can't say, there is much improvement in that period.  We were losing much heart over the disease, but your site has thrown some light in to this, we will try to follow your suggestions after consulting with Doctor,  at least now we know that there are people who fight and won that disease.  Thanks again for your site.

Regards

Srenigarajan

srenig@hotmail.com

Chennai – India

July 8th, 2007

Hi Lenor and friends,

What a great website!  You are an inspiration. Suddenly I don't feel so alone.  I was diagnosed with dermatomyositis in January of 2006.  It actually started in August of 2003 after taking Lipitor (only took 7 pills) and going out into the sun.  I had a phototoxic reaction and my symptoms appeared overnight.  It took 2 1/2 years and 21 doctors' visits later to finally be diagnosed.  Ironically, I thought I had DM in June of 2005 and went to a rheumatologist of said I absolutely did not have DM.  By the time they started running the normal battery of tests, my muscles were damaged and I had pulmonary fibrosis.  I am currently taking methotrexate and started back on prednisone to hopefully slow down the ILD.  I worry about taking methotrexate with ILD.  Anyone have any thoughts on that? nagould@netzero.net .   I recently started the UltraSimple Diet by Mark Hyman, MD.  I feel FANTASTIC.  My scalp has stopped flaking and turning red, my "mechanic's hand" look like normal hands again (anyone with DM can relate).  Anyway, it's worth a try. The diet a based on reducing inflammation.  It is also low allergenic, since people with autoimmune disorders develop food sensitivities. Hopefully, it will help with my severe photosensitivity and ILD.

Anyway, good luck and God bless to all.

Nancy

July 3rd, 2007

Hi Lenor,

Came across your website while searching for answers.  Thank you so much for taking the time to create it. I am 61, diagnosed with PM after hip surgery three years ago.  I may have already had it kind of grumbling along for a while but the surgery threw my system high speed into trouble. I am on prednisone and methotrexate.  I was on both for about a year, then slowly tapered off prednisone with no ill effects, the methotrexate was working.  Then I got pneumonia.  I was scared, alone and not sure what to do, I just kept getting sicker and since my family doc retired suddenly (illness) and my rheumatologist was on vacation, I went to a walk-in.  The doc gave me a script for antibiotics for one week but would'nt renew it, (afraid I'd get immune to the drug).  He obviously didn't know anything about my condition.  Desperate, I took myself off the methatrexate, trying to let my immune system fight.  BIG mistake.  The pneumonia got better but my CPK went up real high real fast, and I began to have trouble swallowing even a sip of water.  Back on the prednisone and methatrexate for three weeks, and able to swallow a little easier but still choke.  I have to be very careful, and there is a lot I cant eat.  Liquid lunch mostly.  I am afraid it will not get better but praying about it.  Anybody out there please don't follow my bad example.  Stay on your meds.   I was very encouraged Lenore to read of your struggle and your good attitude.  It will I think help me cope a little better after reading this web-site and finding I am not alone.  God Bless you, Sandy

June 24th, 2007

Lenor,
It's great to hear that you're doing so well, lately. You look fantastic, happy, healthy, and beautiful. Your hard work, patience, and endurance have surely helped you get to where you are. I'm also glad to hear that you had another successful trip abroad and that you have the energy to work out in the yard this spring.

I love to work outside. I'm getting my strength back to cut the grass, etc, but getting up and down from kneeling is still a chore for me, so weeding and planting hasn't been as much fun this year.

I check back to your site often for your latest updates, and am so thankful that you've taken the time to keep your site up to date and to show how we can all get through this.

My Ck's are down to 315 now, from a high of well over 100,000 last October (2006). I visited my neurologists yesterday (for the first time since Feb), and they were very pleased with my progress. I'm back to work full time, I'm driving again, no cane or walker, I'm very committed to my exercise routine that they gave me in physical therapy. I'm walking a couple of miles each night, and I started adding a 1-mile slow jog in three times a week. I used to be a competitive runner, so I miss the ability to run, since it was one of my great outlets for stress and it was my exercise of preference since I was in high school. My doctors told me not to count out anything, and that there is no reason to believe that running won't be in my future again. Your site sure gives me hope of that.

My neurologists cleared me to start doing some light weight training and jogging again, and said that my strength had improved significantly since February. I'm at about 50% now, I was at about 25% then, and I'm feeling much better now. Still feeling a lot of upper leg weakness, mostly. I'm able to work out with 15lb weights now, and I was using "soup cans" in February, because I couldn't even lift the one pound weights over my head. I can also do about 20 full pushups now, and I couldn't even do 1 back in February. I've seen a lot of progress and am very thankful for each new thing I can do.

I'm off of the Solumedrol IV (weekly), that I was on for 5 months. I take a very high dosage of prednisone on Tuesdays and Fridays now. They're working on starting a taper this month, and continuing the CK checks monthly to see how the taper goes. I'm feeling better, so I'm hoping the CK's will be under 300 this month. Wish me luck.

Thanks again for keeping us all posted on your progress. You're a wonderful person with a strong support system, and an inspiration to those of us who are scared and going through this for the first time.

John Herlihy

June 15th, 2007

I just came across your website trying to find out more about Polymyositis.
My mother has just been diagnosed with the disease and I'm trying to find out as much as I can about it. Reading your page is encouraging. I know we're in for a lifelong battle but at lease now we know what we're up against. Thanks for taking the time to put your site together.

-Juan Angel Gomez
San Antonio, TX

June 10th, 2007

Hi Lenor,

I came across your website while I was looking up polymyositis because I'm studying for my medical board exam.  I'm going into my third year in medical school (assuming I pass my exam).  I am so impressed by how you made positive light out of everything you've gone through.  We all go through hard times, but its great when we can look past them and focus on the good things in life.  You website has inspired me to keep at it with medical school.  Often times it's overwhelming and quite frustrating.  Like you, I'm type A and I work hard and play hard.  Ever since I've been in med school, though, I've just been working hard, no play.  Often times I wonder if it's worth it.  After taking a study break to read about the last 4 years of your life and your fight against polymyositis, it's inspired me to keep going.  I think if I can help one person, or give one person a chance to more fully enjoy life, all the studying and hard work will be worth it.  I wish you the best of luck and pray that God takes away your sickness so that you can truly enjoy life to its fullest. 

June 1st, 2007

Hi!

I came across your website as I was searching for info. on polymyositis.  As I was reading your site I saw a post made by a woman named Doris (posted March 31, 2006) who spoke about Dr. Fuhrman.  Do you happen to have her contact info?  I too have been seeing Dr. Fuhrman and was just wondering how her experience and results have been.

I would really appreciate any help….

Maria

April 30th, 2007

Hi Lenor,

I am still reading your article.  I came across it by accident.  But God must had show me the way.  I have been feeling really down because for 1 1/2 years I have been diagnose with Polymyositis.  I have been on IVIG which helped at the beginning but my enzymes were high.   I am on Methotrexate injection once a week. Also on prednisone 10 mg a day.  I am 66 yrs old. This disease start when I had a car accident on Nov. 2, 2005.  The doctor said I might had it but the car accident brought it out. I had recently moved to Florida to retire.  But believe me I was not prepared for this.  After raising four boys and always working for them never though that I would get this disease.  I was looking forward to enjoy my retirement. I give you much courage because you have been though a lot.  Thank you for this article. I am having very hard time trying to stand up from a chair but I hope that when I go back to the doctor I can change medication. Please let me know if there is anything that can help me with the weakness of the muscles.  My God Bless You and keep you healthy. Thank you, Mylna

April 18, 2007

Hi, my name is Mary and I have a brother who has PM and we are not sure what to do.  We live in Idaho and no one around here know much about this illness.  I guess I was just wondering if you have any suggestions.  He went to the Doctor last week and was told that his psa test was also high.  The dr told him they may be worried about postate cancer.  He has been feeling very weak and fatigue.  I sure would appreciate any suggestions you can give me. God Bless you  Mary

March 13, 2007

Have you used any herbal treatments or has anyone else? please answer as my husband is having an enormous trouble in breathing as well as other symptoms. wei lab is showing a treatment for fibrosis with herbs--does anyone know anything about this?e-mail to olivercollectrors@hotmail.com thanks.

Beverly

Sunday, October 1st, 2006

Hello Lenor,

I'm so relieved to finally get some more info on PM. My name is Jamie, I'm 26 and I was diagnosed (not officially) with PM Sept 2005. Not satisfied with treatments or answers, I recently sought a second opinion. I stumbled onto your website looking for more info on JO-1 antibodies, as my NEW rheumatologist called me today with positive test results. I'm scheduled for all of the tests CT scan, pulmonary, muscle biopsy, stc next week. I'm not having any of the pulmonary symptoms so I'm hoping for the best. Anyway, I just wanted to thank you. When I found out about this disease, everyone (including my first rheumatologist) treated it like a cold. "Take the medicine and you'll be fine."  I guess I put it in my own head that if I ignore how bad I feel and how hard it is just to make it through the day, maybe it'll all get better on its own.  Obviously, I wasn't ever told how serious PM really is. So, thank you again. And stay well.

Sincerely,

Jamie

Thursday September 28th 2006

Hi Lenor,

I was gald to come across you story on-line. I have been dealing with Polymyositis since 2002 and have recently been diagnosed with interstitial lung disorder last week and was searching the web for some answers.

I have been told that my lung capacity is 60% and that I may be put on new medications or be a candidate for a lung transplant. However, I wasn't sure that I would be considered a candidate for transplant surgery because of my Plymyositis. I have been on 20mg. of prednisone every other day for the last four years after decreasing from a higher dose.

I was wondering if you might try to answer a few questions that I have. I have included my e-mail address in this letter.

At the time of you diagnosis, what was your lung capacity? And how fast did you lose lung capacity? Also, did your capacity increase with the use of medications?

Thank You for Your time.

J.M Carpenter

Saturday, September 16th , 2006

Hi,

I been following your journey and wanted to ask a question. I have Mixed connective Tissue Disease and Polymyositis. Can you tell me who your main doctor for the disease is? I also need to start Rituxan and want to know who I should contact in NY.

Thanks, Bev

Saturday, September 16th, 2006

Hi Lenor,

I was searching the web for information on Rituxan and Scleroderma and found your website. I was totally engrossed since I have some of the same symptoms, Pulmonary Fibrosis and Shingles. (I have it now, ouch) and we both have seen doctors at Yale. (aren't they wonderful?) I am still using IVIG and had several insurance fights to keep that going.

I have a website too and people always write to me, telling me how much it helps to read someone else's story. That is how I felt about your site.

Stay Well,

Linda

Thursday, July 27th, 2006

Hello Lenor,

My father was digosed with pf on tuesday, he is actually in icu, and on life support, i am not sure what is going to happen but as soon as he gets home i will do what you do, my email is @hotmail.com i am just learning about this disease, and everything on your web-site makes sense of what my father experience in the last year or so.

Melissa

Wednesday, July 19th, 2006

I was diagnosed with lung disease in January but still had many other symptoms and finally went to the Mayo Clinic in April where I was also diagnosed with Polymyositis.  I'm currently on Prednisone, Cellcept and Bactrim DS.  I'm 51 years old and work fulltime.  It definitely is a struggle and I hope to beat it.  My pulmonologist originally diagnosed me with pulmonary fibrosis in January but has since been waffling.  We may end up doing a lung biopsy soon to get a definitive diagnosis.  My rheumatologist seems to think the Cellcept will also help my lungs.  I sure hope so.

Good luck to you all.

Robin

Wednesday, June 28th, 2006

Hello Lenor,

Thank-you for a wonderful site to visit.  I was diagnosis with Lupus several years ago & also have pulmonary fibrosis.  While I am controlling the lupus & PF through prednisone & imuran my body has been hosting a bit of surprise.  Back in November 05 I started to develop a rash on my fingers, where my skin was splitting & peeling around the nails. I then developed some dry patches on my legs & arms.  When you have an autoimmune disease you don't always know which Dr to call.  Is it my Rheumatoligist, regular Dr. or Pulmonary Dr ?  Well my first Dr. visit of 2006 was with my Rheumatoligist & he didn't think my hand & legs was lupus related but he had increased my prednisone for a few days with no effect.  While all of this was going on I was working full-time & taking care of mother (we lived together).  My mother needed 24 hour care & thank goodness we had a wonderful neighbor who would stay with my mother from 9:00 to 2:00 pm.  My younger brother was living in the mother-in-law quarter & we were living in the main house, so he was able to take care of mom when I wasn't there.  My older two brothers would come on weekends & stay with mom so we all had alternating weekends.  We are truly blessed that we all got along & were able to work together to take care of Mom.  My younger sister lives in Colorado but was able to come 3 times in the last 5 months of my mom's life.  She passed away on 2/11/06 five days after her 73rd birthday.   Your body reacts in strange ways when under stress because 1 week after my mom died I was not able to walk on my left foot.  I had extreme pain in my left ankle & had to crawl to the bathroom in the morning.  I called my brother to take me to the ER where they tested me for various things & basically gave me crutches & told me to call my Dr the next day.  To make a long story short (I had seen a Dermatologist a few days after my mom died & had a skin biopsy) my Rheumatoligist diagnosis me with Psoriatic Arthritis.  So I'm on methrotraxate in addition to Imuran & prednisone with a few other drugs thrown in for good measure.  While I was off work (two months) I had a MRI done on my lungs & my pulmonary Dr. found a small spot on my right lung.  He didn't seem overly concerned stating it was probably my PF, I generally have a chest x-ray every 6 mo to see if my PF has progressed.  I have tried to keep my spirits up & I do look forward to your web-site which helps.  I know that I am not alone in all of this & that my higher power helps me everyday.  Sorry that this has been all about me but to tell you the truth I haven't actually written any of this down & it feels great to share my story a bit.  Thanks for allowing us into your life & I look forward to your monthly journal. 

WITH MANY BLESSING TO YOU & YOURS

BELINDA 

Thursday, June 8th, 2006

Dear Lenor,
Hello.  I am mother of 5 and just stumbled across your
website.  I was diagnosed yesterday with Polymyositis.
I had been to several different doctors and all
misdiagnosed me until yesterday.  

I used to exercise, live an active life until 3 months
ago when this disease started abruptly.  I am slowing
recovering, but still have a lot of muscle stiffness
and pain.  But I have a positive attitude and look
forward to recovery!

I would love to hear from you.  I am just a normal mom
who would like to talk to someone who understands.

Thanks,
Mom of 5

Saturday, May 13, 2006

I didn't realize how much I'd come to count on your updates, but apparently, I do! It's May 11th, and you haven't "reported in" since that awful case of shingles in March. I hope it's just because business is booming or you're some place exotic having a good time. Please check in if just to say that you're okay.

I'm having my second Cytoxan treatment tomorrow and am looking forward to getting the scoop from you on what comes after Cytoxan. I want you to know how special you are (to someone you don't even know!) and how much your website does for others. It's important stuff! 

My pulmonary fibrosis is the foremost concern to my doctors, as it is progressing unchecked. I know they are doing everything they can to help me, but it keeps worsening, and, as you know, these drugs take time to kick in, so it feels a bit like a race. I believe I would be absolutely terrified at this point but for you and your website. It's like having a big sister who's a couple of steps ahead of me who keeps turning around saying, "Watch out for that. Don't step there. Come this way; it's less rocky. Now, don't be afraid of that. It just looks frightening."

I wish you continued improvement and lots of good times this summer! And I hope you let us all know how you're doing very soon.

"Thanks" seems so inadequate for the way I feel about what you've done here, but please accept mine and know that it is heartfelt.

Thursday, May 11, 2006

Ada,

Dear Lenor

What a wonderful website you have!   It's so well laid out. You certainly are an example of endurance and a great attitude. 

I was diagnosed with Polymyositis in Jan 06.  I was struggling with something for about a half year before, and I think taking lipitor put me over the edge.  I have always been very active, so this has "crimped" my style considerably.  But adversity as you know is a challenge and an opportunity, so I'm learning a lot about myself and what is important in life.  Had a cpk of 6600 when I was diagnosed.  They initially put me on 40mg of prednisone.  My cpk went down four thousand points in three weeks.  It was hopeful but after that it just sat at 2300.  They put me on methotrexate in March and I'm up to 20mg once a week.  My cpk went down another 800 points recently, but now again it's been sitting at 1500 for the last three weeks.  I've been doing well with the prednisone and methetrexate so far.  I do exercise and try to avoid, sodium, simple crabs, bread, and fats of course.  So far I've kept my weight down. 

I had great muscle weakness in December before I was diagnosed, but in April my strength slowly started to return.  Now I've "plateaued" however.  No significant muscle gains in the last few weeks.  I wonder how much I should push my body to exercise with my cpk still high.  My doctor just tells me to exercise moderately which still leaves me wondering what exactly he means by moderate.   Ha! I'm being followed by the head of the department of Rheumatology at the University of Washington .  He and I email when labs are taken and I can ask him any questions although his replies are always short and sometimes ambiguous.  I also have a local Internist who keeps in touch with my doctor in Seattle and me here of course.

Having read peoples story about Polymyositis on the web, I have felt, so far lucky.  I've managed to continue working and have had no hospitalizations.  However, I'm concerned with the stubbornness of my cpk, that I might not have such a simple case of Polymyositis as my doctor thought initially.  I have to be patient.  That is the challenge.

If you have any advice or suggestions, would love to hear from you.  My email is: adahc@aboutmontana.net .

Thanks

Ada

I take milk thistle, complex vitamin b and also an anti inflammatory supplement that my naturopath suggested.  Of course it is difficult to determine whether what you are ALL taking helps and which "pill", supplement is really turning the tide.

Friday, April 28th, 2006

Trudy,

Dear Lenor,

My husband recently stumbled upon your web site searching for more information regarding my auto-immune illness and I am so happy he did . I read your story and am so amazed at your incredible strength and determination. Reading what others wrote in your guest book made me feel not so alone, as it is so easy for this to consume you.

I have been diagnosed with dermatomyositis at the age of 33, it has been a very trying 2 years of my life. I have three children ages 8, 6 & 4 who are my very reason for not giving up when so many times it would have been easier.  I have failed so many medicines including Imuran & Cellcept combined which made for a very interesting cocktail of which I spent most of my days walking around in a lethargic state, telling my children to eat dinner when it was breakfast, constantly forgetting everything and literally being spaced out all the time and not even knowing it, thank god that one failed.

I am now on injectable Methotrexate and Humira, as of my last appointment my muscle enzymes are on the incline and if this continues we must try something new once again. The good news is I am now off Prednisone after 2 years. My pain is much less then before however with dermatomyositis the skin on my fingers split open at any given moment. I guess I'll take the skin problem over the muscle any time.

Anyway,  I just wanted to thank you for taking the time to create a site that let's us all know we are not alone and is also very helpful in educating ourselves, sometimes our Doctor's forget we didn't go to med. school.

Good luck to you and I am looking forward to checking back on an update. By the way I'm so happy for you in finding your wonderful husband, my husband has been my shoulder to cry on and my strength when I had none. Everyone needs that kind of support just getting through the triumphs and tragedies of life even without having an awful auto-immune illness. 

Thank you once again.

Trudy- New York

Wednesday, April 26th, 2006

Lynne,

Hi Lenor
As yet I haven't read all your story, but your endurance and your zest for living, just to be well and drug free, is a credit to you.
What a lovely 57th birthday present, I have just been diagnosed with IPF, quickly told by my new Dr at the hospital where I have been an outpatient since the end of January 2006. He told me not to worry, he had arranged an appointment with my respiratory specialist who I would see in 2 or 3 weeks. (I am still waiting for the appointment at this stage) I had previously seen the respiratory specialist some 3 years earlier and although lots of tests, cat scans, breathing tests etc, nothing was conclusive until now. Not worrying sent me straight home and on the net to find out what Pulmonary Fibrosis was, I sat at my computer and cried. I am not ready to have my life snuffed out and will fight with every breath I have no matter how hard, to live and at least reach the age my
mother is now 86. How did all this start? I started a business in the food industry legally in 2003, started playing in it in 2002, but was bombarded, by people wanting to purchase my products so investigated further and came across a great manufacturer who
listened. We are at present bringing out a new range which he will make for me, under my label. By the way its in the cheese industry, mainly in sheep and goat, and great for lactose sufferers. It was hard starting, firstly someone hit me at a set of traffic lights
causing $7000 to my new vehicle, next I cracked the cylinder head, then the refrigeration packed up. (I drive a refrigerated 1 tone van) I started sliding into debt and re financed to keep my head afloat, then I got a letter from the tax dept to say I owed them
$7000. (a stuff up by a previous accountant) It never rains but it pours, I was constantly asked if someone was trying to tell me something, but being a stubborn female I refused to give in. It took me a year to pay the tax man back and felt at last I was turning a
corner. At Xmas 2005 I developed two tiny pin pricks in the lower half of my right leg, which seemed to get bigger by the day, that seemed not to want to heal and turned to my GP for help, the first lot of antibiotics didn't work, neither did the next lot, so I was
sent off to outpatients for further investigation. I met this great Dr and when he wanted to do a thorough examination but I asked him to please be careful with the leg. I also had an elevated blood reading which seemed to over the last 3 years get higher the ESR
should read 20 mine was 82, but no one could find what it was. The Doc called in a dermatologist and he seemed to think I had a chronic inflammation of the blood vessels and arranged for a biopsy (I reckon my voice went up 8 octaves) The biopsy confirmed I had vasculitis a chronic inflammation of the small blood vessels. I was prescribed 25mg of prednisone, I read the side effects, but I actually lost 7kg, since they have reduced the amount 12.5mg my weight has gone back to normal. The pin pricks have ulcerated and
should have gone within a month, instead I am still treating them daily first with solarsite which did nothing and now diprosone. I went to wound care clinic, and gave me a new drug which I managed to last 3 days on, the drug ate into new skin and kept me on
pain-killers for the 3 days, so being good at self diagnosis, went back to diprosone. My business has suffered slightly, I go to Farmers Markets across the state of Victoria, Australia and my fellow colleagues who know what I am going through are fantastic.
They help me load and unload all the heavy things and I remain cheerful to my ever increasing customers. I don't want to sell this business I have st rived so hard and long hours to achieve, but in reality I know that one day I must. My Family living in another
country across the ditch as we call it (NZ) are pleading with me to sell and go home, but this stubborn female just refuses to give in.

I just pray for a cure as we all do
Best wishes to all
Lynne

Wednesday, April 12th, 2006

Doris,

Hi Lenor,

I read your story and was really moved. I was diagnosed with polymyositis in
Nov. 2005, though I had symptoms since the spring of that year. Reading your
story helped me emotionally. I'm currently on prednisone and methotrexate
and am concerned with all the side effects of these medications but my
rheumatologist paints an even uglier picture if I stop taking these drugs,
so I will not, but I have hope that I will become well and not need them.
That's why I wanted to share this with you and everyone who reads this.

While looking for links on polymyositis and autoimmune diseases, I came
across Dr. Fuhrman's website, www.drfuhrman.com . He is a medical doctor in
Flemington, NJ, who specializes in nutrition. After meeting with him, I now
have hope that there is a cure for polymyositis. He wrote a book called  "Eat
to Live" and he has successfully cured people with autoimmune diseases with
diet and nutritional supplements. One of his patients wrote a book called
"The Lupus Recovery Diet." In this book, a woman with lupus became cured
following his diet and she interviewed other patients with autoimmune
diseases who also were cured. I am currently on his diet, only 2 weeks, so I
haven't seen any changes yet, but I have hope that there is a cure. His diet
is vegetarian, no dairy, flour, gluten, sugar, salt or oil. Alot of
cruciferous vegetables, greens, fruits, flax seeds, beans and nuts. There is
juicing 3 times a day and  "blended" salads are created with a Vitamix.
Additional supplements are needed, such as vitamin D, calcium, folic acid
and fish oil with high doses of DHA and EPA. I also take a multivitamin
without vitamin A and betacarotene.

It's a difficult diet to follow, but I have nothing to lose, except maybe
some weight, and possibly a cure.

Good luck,
Doris

Friday, March 31st, 2006

Joane,

Hi Lenore,

Just been reading your story. I have been diagnosed with Fibrosis and reading your story was such a help. I live in Australia and am 77 years old. You are an example to any of us with this problem. God Bless and I hope that you will continue to progress with good results. Hang in there Lenore!!

Regards from down under

Joane

Sunday, March 19th, 2006

Joy,

I have just been diagnosed with IPF … and just getting used to the fact that my lungs are not so good any longer.  In 5 days I will have my first CT scan … so we will know more then.  I have all the symptoms, except weight loss – that one I would like!  I was shocked to read that there is a life expectancy of 5-7 years.  I had not thought of being in reclining years.  I am 63 (just turned Feb 22), I have a wonderful, wonderful husband.  I hope that he will remain strong for and with me if this IPF gets worse.

Anyway, thank you for your story.  You are beautiful inside and out …

Joy

Thursday, March 16th, 2006

Mac,

Thank you Lenor for a very inspiring story of your journey coping with this terrible disease.  I was diagnosed with IPF in June of 2005.  I'm also a New Englander from NH.  I loved what you have done with your little home.  It is very attractive and shows the care and love that you have put into this home.  I'm so glad that you found a keeper (the ex-Marine).  He sounds like a solid partner that's in this with you for the duration.  Now that's a real man!  Keep up the good fight and I hope to see further updates (if I'm still around).  I am 74 years old and so it is obvious that my prognosis isn't very bright but I'll keep fighting until I can't.Hugs, Mac

Thrusday, March 16th, 2006

Melissa,

Hi Lenor- I just wanted to thank you for letting others read your inspiring journals. I have had polymyositis since I was 27. I am now 31.
I have had lots of ups and downs. Right now I am trying to recover from a bad flare, almost went out on diabilty for good but I resisted and now I am improving a little. I guess the thing I love most about your journals is how you met Chris after you were diagnosed. I am still single and I guess I thought I would never find my true love with my extra pounds and being handicapped but you have given me hope (although I am not drop dead gorgeous like you are. Ha Ha) I still believe there is a man out there for me. I am starting to use the alternative approach since the only thing that helps me is the Igg but then my body gets used to it and I start to flare. I am taking glyconutrients. I was wondering if you knew anything about them? I also started taking astragalus and I am doing acupunture. I am trying the imflammation diet but it is tough. I hope you are still doing well. Thank you again for all your information and helping me feel less lonely. Sincerly,  Melissa.  

Monday, March 13th, 2006

Madeleine,

Thank you... I was diagnosed January 2005.  I have lost movement in my shoulders, and in the past few weeks become depressed.  I am so glad you are out there to tell your story.  God always sends me angels when I need them. 

Tuesday, February 28th, 2006

Pricella,

Hello Please read this!, I already wrote but I want to know how can I share my story to others. Also, I never did mention what medication I have been on are on: predsone the highest was 80mg still on it. Immuran still on it, Mextrodte not anymore,  IVIG not anymore , Imbrel not anymore, caltrate still on it, centruim still on it, Rituin on it now. Rituin is new it been out since 1997. I wanted to know does anyone know about this drug? I'm so tried of talking medication. All of the medication I said I took should work right?! But I'm so mad because they don't work for me but for others. I will give anything to get better. Again my email is pricilla_68@msn.com anyone can write. And I take three types of heart medications. I know I might spelled some of the names a little wrong but I'm not were I can spell the words off of the bottle. Also, most are given through an IV so I don't remember how to spell their name. But I hope everyone know which drugs I'm talking about.  

Friday, February 17th, 2006

Brenda,

Hi Lenor, Thank you so much for sharing your story. My Dad has just been diagnosed with Polymyositis. Reading your story was more helpful than any medical site. You obviously have a wonderful outlook and spirit. I know my Dad will enjoy reading your story as well. Thanks again & I wish you all the best.

Kind regards, Brenda Dentel Bellingham, WA

Sunday, January 22, 2006