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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amberhere 02/29/2016

Hi all, just an update from my last post. Been to see the Dermatologist today and now having a CPK blood test soon. He has prescribed some steroid cream which I think is highly unlikely to work, and if that doesnt work another cream again which I think will be no good. Its back to the drawing board again - he said to increase steroid up gradually if none of the cream works so back I go again up to 3mg and possibly higher but no higher than 5mg. What a handful this DM is!! Due to see Rheumy soon and see what the CPK test says. Best wishes to all Amber

nanny1611 02/29/2016

Glad you went to see your doctor, Amber, but sorry you might have to increase your prednisone. However, the last 5 mg. of prednisone are always the most difficult to wean off. I'm sure this is temporary. But even if it's not, 5 mg. isn't much, especially when you consider how much we took at the beginning of our various journeys. Best wishes for your rash to clear up.

autumm 03/01/2016

Hi Amber. I am glad you will see you Rheumatologist soon. I know it's hard to be back on steriods but it looks as if once you went below 5mgs it started to come back. This is something the Rheumatologist can address either by changing your MTX dose or trying something else. It may be that you just have to sit on the 5mgs for a while before you taper again. We are thinking of you. Best wishes. Autumm

trpt1 03/01/2016

Hi Amberhere, I am sorry that you must go up on the steroids. Hopefully the rash will go away soon. Best Wishes.

junedm 03/02/2016

Hi, Amberhere; it has been a while since I have posted anything. Just wanted to mention I have been on 40mg prednisone since 11/5/2015? My rheumatologist said the last time I seen him no wean yet. Just wondering how long were u on prednisone before they started weaning u or added another med? Also, good luck with your rash. Sending my prayers your way!

amberhere 03/02/2016

Thank you all for your replies and kind wishes. JuneDM - I started tapering Prednisone when my Rheumy put me on MTX (DMARD). Luckily I wasnt on a very high dose to begin with - the MTX took about 4 months to kick in so I then began the tapering. Tapering is a very slow process - for lots of us it can take a long time - I think the secret is to do either 1/2mg at a time though some of us have done 1mg. Usually after 4 weeks if you haven't had a flare and feel OK, you can then go down another 1/2mg. Unfortunately I suffered withdrawal symptoms similar to a flare which apparently the steroid can actually mimic so it is a question of slowly and gradually. My Rheumy also prescribed Plaquenil for the redness on my eye and hands which I also take. It is best to discuss the tapering with your Rheumy. Thanks for your prayers. Take care. Amber

sammyw 03/03/2016

Hi Amber,
I'm sorry to hear that you may have to increase prednisone again. I know how hard it is to taper and the effects that we can feel just by decreasing a half milligram. Maybe you wont have to or maybe by just a small amount. I hope the creams work for your hand rash and that it isn't bothering you too much. Take care.

junedm 03/05/2016

Amber, Thanks for your advice.

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