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