Hi Angela, Please let me know about the med your doctor is using to cut the steroids. I am on 6mg of prednisone. I would like to get off this *&^%#! I sure would like to know how to get off without needing to taper. Is this a new treatment? Please let me know the name of the med. I would like to discuss this with the rheumy and endocrine doctor. I hope this type of treatment would work for me. I seem to flare at 4mg of prednisone. I would love to know a way around the steroid, and I am sure everyone here would be interested too.

Thank you for your post!

http://www.myositis.org/about-tma/in-the-spotlight/358-acthar-now-available-as-a-treatment-for-dermatomyositis-and-polymyositis

:) yea its a new treatment but an old drug!
i hope this can help you.
im still waiting approval with my insurance so please say a prayer. doc said its expensive without but i think its worth it regardless.

Acthar is a substitute for steroids. It forces your body to make steroids. It is very expensive so make sure your insurance supports its use. I'm not sure how much of the steroid side effects will be eliminated since it is just a different type of medication.

I know there have been a few discussions on Acthar here. It was also a large topic during the 2012 TMA conference.

Is this Acthar ? Or is it steriod by injection which don't need taper but brings its own issues. There are no new treatments, trust me but oh how I wish there were. You will be ok Trpt, you just need the sparing drug to have more time. I go to 1mg on Thursday, it will be hell for three weeks then stop forever, I am very nervous about this and hope the disease does not make a quick return. Autumm

Autumm - lexisgirl is right.
and my doctor did tell me it was new :) its been around a long time but new to the treatment of PM & DM .

I just started Acthar gel two weeks ago for dermatomyositis. I also abruptly stopped prednisone(60mg) and switched to the gel immediately. I have not noticed any particular impact from the switch over the last two weeks but I am still getting better slowly, or at least improving, so it is working.

So far the side effects have not changed from what I have experienced from prednisone but I have a feeling it may be to soon to see an improvement on that front.

demb its great to hear someone else doing this!
im glad you are improving. where do they do the injections? your arm? does it hurt? how long will you be doing the injections?

there is no bad effects from just stopping the steroids??
thats awesome and one thing i am afraid of even though he said it would be fine. i mean i trust him but he almost makes this drug sound to good to be true...
im still waiting approval from my insurance so please say a prayer! im getting so anxious!!

I can imagine there aren't the side effects from the Prednisone taper because you are still getting an increase in steroids. It is just the difference between taking it into your body from Prednisone or having your body increase its steroid levels through an injection with Acthar. I fear there is a misconception that you are going off steroids. Technically you are but Acthar makes your body make more steroids so you are still getting a heavy steroid load. Does that make sense?

I talked to my doctor about Acthar. She felt it was better to stay on my taper path off Prednisone and continue my sparing drugs. By the time Acthar hit the market for Myositis, my taper was well on it's way and I was just a few months away from getting off steroids completely. I don't know that Acthar replaces the need for a steroid sparing drug. Please make sure you understand Acthar and you know what it is before you assume it is a miracle cure....which it is not. It is just another way to get the steroids.

i think i understand but he seemed pretty promising.im going to do some more research and make a list of questions for my next visit! thank you for your advise!

I believe it was around many years ago for treating DM/PM but fell out if fashion as it is not as successful as the present treatment, prednisone and the sparing drugs. It does not work for all but wish you all the best with it. Would be interesting to hear how it goes for you. Autumm

Yes it just causes my body to produce the same steroid so I am assuming that is the cause for no real nastiness happening when I quit taking prednisone abruptly.

As for the switch to acthar, it was because I was getting some nasty side effects from the prednisone and it was not working very well even at high doses for weeks. It did work, just very slowly. The acthar gel is no miracle, as was said, but it is always an option in the arsenal. Can't ever have too many options.

Angela, I wish you well on your treatment. I did not realize you were talking about Acthar. I know that my insurance will not approve Acthar. I hope you will be able to get approval and that it works well.

I will need to talk to my doctor about continuing my taper anyway. I have either a bladder thing or kidney disease happening (thank you autoantibodies!). If I taper to 5mg and my body considers me to be sick, then I will have an adrenal problem and need to go up on prednisone. I am going to stay at my 6mg and talk to the doctor on where to go from here. It is too bad organ involvement can ruin tapering plans!

Autumn. I hope you will be able to get completely off the steroid. This is great news that you are at 1mg!!! Stay in touch with the endocrine doctor. I will keep you in my prayers.

thank you for all the responses.
im just overly excited to be done with predisone. i am have bad side effects and thats why we are switching. he also thinks that it should be a better treatment for me!
im pretty sure its corticotyopin . and im pretty sure its the same that we have been discussing.
trpt and everyone else good luck your journey off the drugs... :)

Boy I had to google that. Acthar and corticotyopin are not the same from what I can tell. Be sure to check with your doctor so you are clear what you are taking, what to expect, and how it will help your Myositis.

Please keep us posted. We are all looking for things that are proven to help.

will do. im still waiting my insurance approval but said he does not think this will be an issue. ill keep you guys updated :)