New to MS World

[kimmeestar]

Hi. I have been trying to connect with others who have MS. I have recently been looking for anyone who has tried Acthar for MS flare ups. I can't do steroids and have been having a flare up of the worst magnitude for 7 weeks now. Never had one for this long or this bad before. Can't do IV steroids any more and this was offered as an alternative. Any info would be helpful. Hanging on by a thread. Need to share. Would love to hear back about anything.

Thank you!!!

Kimberlee

[kelm10]

welcome

Welcome to MSWorld.

I am sorry that you have this going on.

I left your thread in the Tell Us about yourself section. But, wanted to introduce you to a couple of things since you are new.

There is a medications and treatment section under the message boards. There really was not a thread about Acthar Gel. But, did a search (using the search tab in the right upper hand corner of the message board section and typed in Acthar Gel. There is a thread titled ACTH (which is the generic of Acthar Gel. So, I am posting a link to that thread, here.

http://www.msworld.org/forum/showthr...ght=acthar+gel

There was another post that talked about the posters insurance company not covering it. It has become quite expensive with the reintroducing it as Acthar Gel. But, when I have talked to the drug representatives they say they do not want this to be an issue. So, if this is the case, make sure that your neuro office and your self contact the drug company for assistance. The drug company is Questcor.

http://www.actharmsrelapse.com/

[hunterd]

WELCOME TO MSWORLD KIMBERLEE!!! it is great to have you here. While I do not have any experience with ACTH . I know there are others here who have, and hopefully they will see this. Take a little time to look around and familiarize yourself with our site, and if you are so inclined, we have a complete chat schedule that includes times and days of each different topic. Good luck!

[LilyClair]

Hi Kimberlee,
I have had two rounds of Acthar Gel and many rounds of IV Steroids during the last 11 years and I can tell you about my experiences with both. The first time I had IV steroids, I plunged into a rapid and severe clinical depression on day 3 of treatment and quickly notified my then neurologist of my situation. I had no clinical history of depression before that event. My neurologist was a jerk and acted like he had never heard of the association between steroids and depression before so I was left on my own to figure out what had happened. Three weeks later, the depression lifted and I found myself a new neurologist. Ever since then, I have taken an antidepressant when I've been on steroids, but I still find them hard to tolerate and find myself avoiding them, even to my detriment.

About 2 years ago my neurologist suggested I try Acthar Gel. It stimulates your body to produce it's own natural steroids and, at least for me, was much milder and more tolerable. It worked really well for me without any of the nasty side effects you get with Solumedrol. The tough part is getting your insurance company to pay for it. Mine covered it the first time around but just recently denied my doctor's request and I was forced to go back to Solumedrol. The problem is that when you need steroids, you need them NOW and can't wait to go through the lengthly appeals process. But if you can get an approval, you have nothing to lose in trying Acthar Gel.


** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **

[kimmeestar]

Responses to New to MS World

Thank you for these replies. I have been navigating through this alone and your words of encouragement, sharing of your experiences, and offering of resources I have yet been able to locate are appreciated and valued beyond measure! Thank you MS World. Thank you!!

Kimberlee

[Chrissy33]

Welcome

I'm new to the MS world too. I was diagnose two years ago I have taken acthar once and I don't really like it because you have measure the medicine to inject it. That was new to me and I wasn't sure if I was doing it right so I opted to go back to steroids. Good luck.

Chrissy