I'll be turning 60 in a week. I had dermatomyositis at age 15. It was extremely debilitating and cause extreme stiffness and weekness. I was on large amounts of prednisone for well over a yesr. I never did fully recover from the extreme loss of muscle, this I'm sure was do in part to the delay of diagnoses. I was hospitalized for nearly a month while the doctors scrambled to figure out why my blood numbers were extremely outside the norm. I've led a fairly normal life physically but have remained underweight and not as strong as the average person.
Now it has returned. Several months ago, while working on my car I had difficulty leaning over the engine as my lower back would immediately start to burn. Even though I had gone through this 45 years ago, I regretfully did not acknowledge to myself that this might have returned. It took until the stiffness and weakness set in before the light went on, much to late.
I'm currently taking predispose but my doctors seem to think that a couple of weeks this treatment is all that is required, they are wrong. I also have chronic heart desease, 4 way bypass at 42 numerous stents, five heart attacks requiring hospitalization as well as several I simply treated myself with nytrostat.
Don't know how this second round is going go, especially considering the heart desease and my age, as well as my doctors attitude. I do have an appointment with a highly respected rheumatologist with experience with dermatomyositis, but the soonest app available is not for 6 weeks.
So, if anyone has any questions they would like to ask someone whom has had a rather long history with this desease feel free. my name is Richard.
Round two here we go.
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Check with natural Dr near you. I went from 15 meds ,loosing my hearing and had gone blind and on my death bed to No meds not much pain and staying out of the Sun. I was 31yrsold this was 5 yrs ago
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Hi, I am a 50 year old mom with the disease and after my ck levels were normal with the help of prednisone- I slowly got off pred and started taking methotrexate (I did do I ivig therapy as well for about 1 year) methotrexate is a strong drug but with less scary side affects,at least in my case - this has really worked for me. And I am doing so much better than I was doing when I first came down with this awful disease.
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Hi, I just had to respond to your post, I responded earlier to another- I'm 50 yrs old and back in 2012 - I started getting some swelling, eventually some joint pain, lost voice couldn't swallow, stairs almost impossible, lifting arms up to wash hair etc difficult -tremendous effort to get up off chair, to get up from toilet etc- docs didn't know what to do with me, finally ended up at mayo clinic. It took them some time to diagnose but was finally diagnosed w some form of myositis - finally diagnosed w derma. ( the reason I had to write was my sister was my rock and I just felt so sorry for her since I couldn't talk she did much of the scheduling etc but it was so frustrating for my family because so little is known about this disease) by the time I was diagnosed I was malnourished and had lost a ton of weight. My ck levels were in the thousands- at first they blasted me w prednisone- when I left the mayo I was on prednisone and started ivig treatment, slowly got stronger and levels became more normal- eventually slowly got off pred and started methotrexate that is what I am taking now, 6 pills once a week and feel almost as good as before the disease but still have some joint probs etc. I wish your sister the very best and I'm sure she appreciates you more then you know!
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hi what made you get your child tested. I think I have the disease just got tested a couple of days ago. my mom passed from it...
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I was diagnosed with DM in 1991 at the age of 24. It had taken 2 years before it went into remission. One it went into remission I couldn't completely come off all the medication basically due to the arthritis that my DM had caused. I continued taking methotrexate and prednisone.
My DM came out of remission 13 years later (2004). All symptoms came on quicker and hit me harder than in 1991. All medications failed me and I ended up bed ridden and eventually had to be hospitalized. I almost lost my battle but just never gave up.
After 2 weeks in the hospital I was discharged from the hospital and started my journey to recovery. Within one month everything started to go down hill and none of the medications helped.
As a last resort my doctor and I decided to try experimenting with Remicade. I didn't appear to help at first but after several months my cpk levels started to come down. After another 14 months, my DM went into remission.
I still take low dosage of methotrexate and prednisone and also have Remicade treatments every six weeks. I've been living with DM for 25 years and have no plans of letting it beat.
It's been hard at times and I've beaten all odds that the doctor's had given me but I'm a better person for it.
My DM came out of remission 13 years later (2004). All symptoms came on quicker and hit me harder than in 1991. All medications failed me and I ended up bed ridden and eventually had to be hospitalized. I almost lost my battle but just never gave up.
After 2 weeks in the hospital I was discharged from the hospital and started my journey to recovery. Within one month everything started to go down hill and none of the medications helped.
As a last resort my doctor and I decided to try experimenting with Remicade. I didn't appear to help at first but after several months my cpk levels started to come down. After another 14 months, my DM went into remission.
I still take low dosage of methotrexate and prednisone and also have Remicade treatments every six weeks. I've been living with DM for 25 years and have no plans of letting it beat.
It's been hard at times and I've beaten all odds that the doctor's had given me but I'm a better person for it.
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My wife was diagnosed with this disease 6 years ago it has been on the rituxan 5 years now she also receives three infusion every month of IVIG and at the beginning when first diagnosis was on 80 milligrams of prednisone a day for 2 years they finally had to take her off of it because of the osteoporosis that it caused. I felt like she was doing better on the prednisone then the IVIG even though she hated it but in the past two years has had two bowel obstructions. Now is having a hard time keeping any kind of solid foods down and the weakness seems to be coming back I don't know what else to do the weight loss has me very concerned she is a very small woman but it is under 90 pounds now I just don't know what to do anymore and the doctors don't seem to have any answers either I just wish everybody the best and prayers that they don't have to go through what my wife is going through right now
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Hi my name is Jenifer and my daughter was diagnosed with JDM when she was six, she is 8 now and is currently undergoing IVIG for the skin rashes, she had extreme muscle weakness when we first started but that has improved, she was in remission for only 7 months when I noticed the heliotrope rash above her eyes, I was wondering if your daughter still needs treatments and if the treatments were used solely for the skin only, she is also on celcept . Jenifer
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I'm so sorry you lost your son so young, the doctors have told me I'm at a huge risk for it too. Sad thing is where I live few doctors even know what it is without looking it up. But they want to test me
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Hello, I was just reading your response and I was very intrigued by the idea of you trying to make the disease go into remission naturally. my 3 year old daughter was diagnosed in Jan 2016 and has been on multiple medications since. she is doing ok with treatment but every time I ask her rheumatologist about diets she says that they haven't linked it to actually working and she doesn't recommend it. how have you been this last year?
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Hi
I'm in Australia too. My 8 year daughter was diagnosed with Jdm 6 months ago. Did you have a support group? It is so encouraging to hear you are well and symptom free!
Thanks
I'm in Australia too. My 8 year daughter was diagnosed with Jdm 6 months ago. Did you have a support group? It is so encouraging to hear you are well and symptom free!
Thanks
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Hi. I'm sorry I haven't been responding back. I'm still doing rituxan infusions. I do two rounds every 6 months 2 weeks apart. I also take now 7.5mg prednisone. I do have osteoporosis and osteoporosis necrosis from prednisone which I've been on 4 years now. I'm about to do another two rounds . I also take prescribed vitamin D2 50000 units once weekly due to the dermatomyositis making me photosensitive. I take biotin and folic every day along with cal mag zinc vitamin. Folic is good also besides biotin for hair loss but I noticed when I took more 1600mcg each day I started feeling stronger and side effects of med's weren't bad. It's been 4 years now. I gained weight due to prednisone I never lost I just kept gaining from 125lbs at first diagnosis then on the prednisone to 160lbs I can actually barely eat and still edema weight . But I can live with it. Your wife I wanted to ask because I asked my RA doc about the mix of doing rituxan and also ivig. She told me usually it's one or the other because you can get more side effects doing both. It does make sense. I pray your wife is OK and doing better. It's not fun and I totally feel for her and you. Feel free to message me back and ask anything you want.I live in California and we have the support group which has grown larger and is in other states as well. KIT meetings. Aka keep in touch meetings for my myositis. The myositis association aka TMA go on line and look it up there are doctors that speak at these meetings that have vast knowledge. I can if you want also put you in touch with some of the head people.
Bless you both
Kimberly
Bless you both
Kimberly
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I have been looking for someone I could relate to. I also had Juvenile Dermatomyositis only at the age of 5. It was a severe case but I was fortunate to go into remission for a very long time. I have had residual symptoms but have been able to live a fairly normal life. The disease left me with muscle weakness in my arms and legs and occasionally I will have severe bouts with fatique. swallowing can be a challenge and I am always concerned about chocking on the smallest amounts of food. Now that I am 62 I find the these incidents occur more often and have become more intense. Though I still try to live day to day it can be a struggle just getting out of bed sometimes. I find that if I am exercising I do much better. generally walking , swimming or water aerobics. I also enjoy gardening when I have the strength but usually end up in bed afterward. I attribute that to sun exposure. I have wondered what the prognosis is for this disease and since it is so rare it is hard to find others who have had similar experiences. Thanks for your post. It really helps!
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