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Old 03-07-2010, 06:42 AM   #1
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dermatomyositis flare?

I was dx'd with DM in June 2006. I did 2 years of Prednisone, Methotrexate, Plaquinel. My symptoms cleared to the extent that I haven't taken any meds for about 1 1/2 years. Now they are starting to reappear--muscle aches, weakness, etc. no rash yet, though. My question is this: What happens if I don't take the Prednisone? I really think the side effects of it are sometimes worse than the benefit. I had compression fractures in my spine due to Prednisone use. I was also DX'd with Fibromyalgia in May 2008. So have started a new medication for that (Savella). I can't get a doctor to tell me what happens if I don't take the meds. If I can keep functioning and continue to work through the pain, weakness etc. what will happen to me? Has anyone tried the "no meds" route? and what happened?

 
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Old 03-13-2010, 09:42 PM   #2
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shar621 HB User
Re: dermatomyositis flare?

Quote:
Originally Posted by jjdonaldson View Post
I was dx'd with DM in June 2006. I did 2 years of Prednisone, Methotrexate, Plaquinel. My symptoms cleared to the extent that I haven't taken any meds for about 1 1/2 years. Now they are starting to reappear--muscle aches, weakness, etc. no rash yet, though. My question is this: What happens if I don't take the Prednisone? I really think the side effects of it are sometimes worse than the benefit. I had compression fractures in my spine due to Prednisone use. I was also DX'd with Fibromyalgia in May 2008. So have started a new medication for that (Savella). I can't get a doctor to tell me what happens if I don't take the meds. If I can keep functioning and continue to work through the pain, weakness etc. what will happen to me? Has anyone tried the "no meds" route? and what happened?
I actually have gotten of the meds because i was getting better and then a few months later the flare started and made me feel very fatigue so i went back to meds. The doctor advice i should always take my meds but my cpk always been high even when i am on the meds. You have to ask the risks of not taking your meds. I always felt the meds is just as fatal for your health than when you dont take it.

 
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Old 08-23-2011, 07:49 PM   #3
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Re: dermatomyositis flare?

every time i go off the meds i have a relaps i can go for about three mouths then it start
back up

 
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Old 09-20-2011, 10:55 AM   #4
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Re: dermatomyositis flare?

i have dm i am curently taking rituximab infusion, methotrexate, axathioprin and steriods but none ov them are really working, ive tryed all the drugs available, my blood results have come down but im still in alot ov pain do u have any ideas.
i have also wonderd what would happen if i didnt take all these drugs.

 
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Old 09-21-2011, 06:34 AM   #5
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Wink Re: dermatomyositis flare?

i have also wonderd what would happen if i didnt take all these drugs.[/QUOTE]


HI,

I have been on and off drugs. Whether I am on or off the DM drugs, I still need to take symptom-controlling meds at times. I'll tell you, I wonder the same thing myself!!

It seems like the drugs are working some times and I get so excited! Then 2-3 weeks later, it seems that was a mirage. I started on methotrexate and prednisone - tapered off prednisone within 6 months and then took myself off methotrexate (gradually) when I got bad liver blood work after a couple years. The prednisone was fabulous, for a couple WEEKS. Then the side effects become obvious. The methotrexate seemed to help, but never completely relieved me. I think this experience that some of us have is what makes us so curious as to what would happen if we just went off the meds!

From there, I relied on various symptom-controlling meds - Advair, Nexium, Antihistamine, then as needed - Tramadol and Vicodin (the latter, very sparingly so I would not develop an immunity).

Eventually, I was doing just too bad and I started on Plaquenil. That seemed to work great after a month. But then I started to do bad again in maybe three months it was obvious. But I still continued for a YEAR.

Recently my doc recommended the methotrexate and prednisone again! I agreed to the methotrexate but not the prednisone. So we are giving that a try.

I still work full time at a very busy job. I am confident that stress and fatigue are huge triggers for me. At John Hopkins Myositis Center, they recommended I add massage and acupuncture. I was already doing the acup. and I am confident it - and strong determination (and need!!!) are why I am still up and running. I also take supplements of various kinds, folic acid and avoid sugar and simple carbs.

I wish there was an easy answer. But they just don't know much about this disease and if you have the disease in a way that is just a little out of what is described in the literature, they know even less. I am just glad that all doctors now acknowledge that pain is a symptom. My first rheumatologist kept saying that if I had pain, that was not from the DM and that just drive me to despair! NO ONE says that anymore.

Dealing with this since 2005. It is the "amyopathic" version, yet it has completely changed my life. This is a systemic disease.

Have a great day. I intend to do so. Best to you.

 
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