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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angelamichelle 11/05/2013

So i had my regular follow up with my neurologist and he has decided to cut the steroids (soooo happy) and try a 6 week non- steroid injection treatment. I cant remember what he said it was called but it does the exact same thing as the steroid but is less harmful etc. Does anyone have any experience with this? i wont even be tapering from the steroids just have this take its place and he said that i shouldn't have any problems :) I'm feeling very optimistic and its just great to have some hope that an "end" is near to this year of being disabled :)
just a little nervous!!
all ideas and thoughts are welcome!
PS: its 2 times a week for 6 weeks. he said i should be 75% better by Christmas im at 50% now!

autumm 11/07/2013

Hi Trpt. I have never seen an endocrinologist for my taper. Here I would only be referred to such a person if my Rheumatologist made that call. He is directly controlling the taper. I find it all very interesting. Wheny I was on 60mgs a day and bouncing Ito his office flying off the. Ceiling telling him how great I felt he used to say' you are not well. You only feel like this because of the steriod ' now I go into him office telling him my life is crap and he says ' you are fine, it's the steriod, hurry up and get off it' . I have to admire this young man, clever but so very caring I am so grateful he has brought me this far. Autumm

deleted_user 11/07/2013

As Lexis said, I would definitely get clarification from your doctor about what exactly it is. As far as I can tell though Acthar gel is corticotropin. The medication I received came with a massive amount of material and information on the medication and it does say the generic name for the medication is corticotropin.

I am not sure if there is an actual generic version of the medication on the market though. I was surprised my insurance agreed to it without any fuss at all. Amazed frankly, considering the cost of the stuff.

pluggingon 11/07/2013

Yesterday I googled Acthar and found interesting information about the history of the medication and the company that invented it. It is derived from pigs9from slaughter houses) and was initially sold for $40 and $50 a vial. Then it was sold to another company that did some clever advertising, labled it an orphan drug, and the initial price is history. Infant seizures is what it was used for. Because it was patented in the 50's, it does not require the research and clinical trials of medications that come on the market now. So there's no proof for many of the claims being made to increase sales. I sincerely hope it is helpful for myositis.

autumm 11/08/2013

Can't find any reference to Acthar Gel bring used here in the UK. I am wondering why, maybe it's just too expensive. Autumm

angelamichelle 12/18/2013

FINALLY ! im starting my injections tomorrow. man was that a battle to get approved...LAST day of steroids !! woooh
wish me luck everyone. im very hopeful for my doc seems to think this will give me the boost i need!

lexisgirl 12/19/2013

So glad you got it approved and are ready to start. Let us know how it goes.

angelamichelle 12/19/2013

i def will thanks for the support :)

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