My daughter is still waiting for her muscle biopsy results,but her Dr. has told us there are treatments. Could some of you elaborate on treatments you have had,and does it put you into a remission so that you can have somewhat of a normal daily living.
If it's dermatomyositis the treatment is usually a steroid (prednisone) at a fairly high level for a number of months - I was on it for 18 months. They also start an immuno-suppresant (steroid sparing as you can't stay on high dose steroids for long term) soon after, usually within a month or so of the steroid. I had methotrexate, but there are a number of different ones they could use. I was on that for about 2 years. I was diagnosed early June 2012 and Im now off all medication and I'm doing pretty good (although I'm aware it could come back).
Was told that, since my polymyositis wasn't diagnosed within the first six months, that the steroid treatments would not be helpful in putting the symptoms into remission. So, haven't taken any medications. Coping with water aerobics, rest, and low activity level.
Best of luck with your daughter's treatment:)
Nell
Thanks for the information!
Thanks so much for the information, and for the prayers. Also was wondering,if any have other diagnosis also such as dysautonomia,POTS,and at what ages did yours start.
Hi enita,
Sorry for the late response, I have Dermatomyositis. My treatment is similar to others. Prednisone, Methotrexate and Imuran to keep everything in check. Once the CPK is steady for a while Prednisone is tapered down slowly. I think the worst part for me was the Methotrexate because it made me nauseous, some people are fine and the prednisone, a lot of people gain weight with this steroid, and it is hard on the self esteem. Plus mood swings can be intense. Remission is possible, but it seems that more people are in medicine induced remission, so they stay on low doses of some kind of meds.
Sorry I can't help with the other diagnosis's but my prayers are with you and your daughter!
Hi Enita,
I have Dermatomyositis and my mom is always worried about me, too. I do pretty darn well with weekly Methotrexate treatment (either via injection at home or oral medication) and folic acid. I also take a fairly large dosage of Neurontin 4x/day to control pain from Fibromyalgia.
I have tried Azithioprine and Plaquenil but they didn't work great for me.
I did do a Prednisone blast this past fall when I also got Lyme Disease - to quickly wipe it out of my system and keep my strength and energy up as I fought that infection. My Rheumatologist and I have an agreement to only resort to Prednisone as a last resort.
One thing that is extremely important to me is to continue with the strength and mobility exercises given to me by a physical therapist that my Rheumatologist sends me to once every year or so to make sure that I am keeping the muscle tissue that is still healthy strong.
Remember, the unknown is always the scariest. Reach out to me or the group if we can help answer any questions that you have :-)
M
Thanks all,this has helped,we go Tuesday for results
She does have PM ,they did infusion if solumedrol,and cyclosporine. She had every adverse reaction. Was admitted to hospital for 14 days at end of 6 week treatments. It almost killed her. She is afraid to try anything else.
I'm so sorry to hear this, Enita. Have things improved since April?