Polymyositis & Dermatomyositis Support Group

Polymyositis (PM) is a type of chronic inflammation of the muscles (inflammatory myopathy) related to dermatomyositis and inclusion body myositis. The inflammation is predominantly of the endomysium in polymyositis, whereas dermatomyositis is characterized by primarily perimysial inflammation.

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/ Polymyositis & Dermatomyositis Support Group

Results finally in

Trevor49
Trevor49
After 4.5 weeks I finally got back my results. I have been worrying that I had als as my legs started twitching and I my hands and body were shaking. The results came back that I have DM and it was a relief even though I don't want anything. I now know what I'm dealing with and I hope things will get better for as I have put my family through a lot of stuff. I'm still going to get tested for lymes as I have this strange stuff going on with the back of my head. I'm on 30 mg of prednisone and 20 mg methrotriate . The Rex said I can go down by 5mg and stop when I get to 15mg to see if the side effects start to go. She says my arms are stronger but I feel they are weaker but I think I was way over anxious. I hope I see a little improvement now as time goes on. I appreciate all the information everyone has provided me it was very comforting. I went on the als form and I will not do that again . My main focus now is get my head in order and start thinking about healing.

Thanks Again everyone and looking forward passing on information so we can all heal.

Trevor
trpt1
trpt1
Hi Trevor, Congratulations on getting a diagnosis. Sorry that you have DM. A good diet is helpful. I use the Joel Fuhrman Super Immunity Diet and it has been very helpful for me.

The beginning of this disease is the most difficult time. Eventually, you will get adjusted to your meds. This disease takes a lot of patience. It took me three months before my meds began to work.

Do not be hard on yourself. You will eventually adjust to your new normal. We talk to one another a lot so do not be afraid to ask any questions.

Keep us posted.
bny806
bny806
glad you have a diagnosis! the unknown is miserable! how did they definitively diagnose you? Skin biposy?
autumm
autumm
Hi Trevor. I am delighted you finally have a diagnosis and can move forward without the worry of the unknown. There is life after treatment for Myositis. I look back on this forum sometimes and no longer see the names I started out with, they are all better and moved on, so too will you in time with treatment.. Take it easy on the steriod taper and give your MTX time to kick in and do its job. We are here for you. Best wishes to you and yours. Autumm
amberhere
amberhere
Hi Trevor49 - glad you finally got a diagnosis though not one you want - I have had DM for over a year now. It is a bit of a long procedure trying to get the meds right. I am on Methotrexate 15mg and 7mg prednisolone plus Plaquenil for the rash. When you do taper the prednisolone just be aware it can take quite a long time - I am still tapering after a year 1mg at a time but still only on 7mg but if I flare up I have to go up again. Believe me, you do feel better after a few months with the meds - bit of a pain having the blood work etc but it is worth it to feel better. The MTX took me 5 months to kick in properly.
nanny1611
nanny1611
So sorry that you have DM, but at least you now know what's wrong. As Autumm has mentioned, there is life after myositis. Best wishes to you for feeling better soon.