Can't believe no one on this board has tried Acthar Gel!!

[cuttersmom]

A few weeks back, I made a post inquiring about anyone's experience with Acthar Gel, in place of IV Solumedrol, to treat an exacerbation, and got no responses from anyone who has tried it.

Lately I've been having issues walking towards the end of the day, especially if I've been working all day. I will usually begin to limp to compensate for a jelly-like leg. Neuro thought that maybe this was from a flare and suggested we try Acthar.

Well, after 3 days of injections, and very LONG days at work, I have to say I love this stuff!  I've had no trouble walking, and it seems to have helped my bladder issues a little bit as well. No real side effects, although it does seem that my face and neck are a little redder than normal.  I'm doing a total of 7 injections and will re-evaluate with the Neuro on the 21st.

If this drug is offered up to anyone in a flair, jump on it!!  As long as you have good insurance. Cost = $25,000 per vial, and I needed 2 vials.

[COBOB]

Not sure what the big advantage is since it forces your adrenal glands to produce cortisol and adrenal corticosteroids.  National MS has a page on it and a long list of precautions and side effects that are pretty similar to IVSM.  

http://nationalmssociety.org/about-multiple-sclerosis/what-we-know-about-ms/treatments/medications/acth/index.aspx

Bob

[supermum_ms]

This is a site that supplies information about acthar gel http://www.acthar.com/ though i didn't go looking for the research that validates usage but i'm sure there will be something available. I do think, just from reading that one site that there are bigger risks associated with acthar, than there are with IV Solumedrol. The high cost would make insurance less likely to aprove usage if there is a cheaper and more widley accepted alternative available, which might explain why you didnt find anyone on it.

Cheers.......JJ

[supermum_ms]

oops bob and I posted at the same time, the site Bob listed would be a better one to look at if anyone is interested in this drug.

Cheers.......JJ

[cuttersmom]

Wow, didn't need to get slammed for providing feedback on a drug that has so far proved its usefullness to me in 3 days. I spoke with a number of people who have used both Acthar and SoluMedrol (I've never tried IVSM), and most will never use SoluMedrol again, too many side effects that actually happen vs. few if any on Acthar. This includes one woman who went from wheelchair to walking in 5 days.

[Sumanadevii]

If the woman went from wheelchair to walking in five days, she was either a poser, it was a placebo effect or a down right miracle.  

I am happy you have found something that works for you.  The cost alone would prevent most middle class people from using it.  

I didn't see anyone slamming you.  We all have opinions.  Some are going to agree and some are going to disagree.  It's a public board, you're gonna be getting the opinion of the public not just your own.

[supermum_ms]

Wow, i'm sorrry if you thought something in my post was a negative attack at you personally, i'm truely sorry if you feel that way, it was never my intent, I can promise you of that!

I was not even thinking negatively towards you or the drug at all, really wasn't. I know nothing about this drug, but was interested because of your positive experience, so i went looking for somethign others who may also be interested and might like to read. Information helps, good or bad, there are risks with most medications, being informed by factual data, in my opinion is a lot more proactive than just going off anacdotal experiences.

I hadn't seen your prior post and i read everything even if I dont post a response to all, acthar just doen't ring a bell, sorry. It is unfortunate that you felt Bob and My posts were directly slamming you, I believe you are mistaken as that would be completely out of charactor for either of us but regardless of me not understanding how, I sincerly appologise for causing you any ill feelings.

JJ

[sari700]

I heard a little about this new drug acthar a few months ago.  It is given as a shot that I thought worked somehow different than solumedrol and is expensive but my doctor told me it is usually covered by insurance.  The thing that made me remember this is the company that makes it (I don't know the name) will give it you free if insurance won't pay for it.  If that is true then it seems worth a try to me.

Sari

[Sumanadevii]

I can't think of one drug that has been discussed on the board were all were in agreement.  Just think of the discussions on DMD's ....steroid treatments monthly...even Vitamin D held pace.  The different opinions, the studies offered for reading all give us knowledge!  It helps us make informed decisions about our health care.

[sllowe]

Hi there,

Thanks for the info. I must of missed your 1st post. I've never heard of it either. I didn't see any slamming, no worries.

It's very typical of us to post pro's and cons to all meds, like Sumi alludes to we don't always have the same opinions or experiences, but it's these very differences in facts being pointed out that members of our forum count on.

I couldn't be happier to hear that it's working for you! It's what gets us by and keeps us moving in the end that makes all the difference.

Thanks for sharing this!
~Shell

[daisy.girl]

From what I have read ACTH (Acthar Gel) is the older treatment of MS relaspes. It is no longer the treatment of choice. Here is some interesting information.

The FDA has specifically labeled H.P. Acthar Gel for use in diagnostic testing of adrenal function. The package insert lists a variety of other diseases and disorders for which it may be used but stresses that patients should preferably be treated with corticosteroids.

The role of ACTH in treating MS exacerbations is also diminishing. ACTH has been replaced by high-potency corticosteroids because of their comparable, if not greater, effectiveness. ACTH does not improve MS exacerbations through any pathway but through stimulating corticosteroid production. Although the mechanism by which corticosteroids allay MS exacerbations is not well understood, it is thought that steroids reduce edema in the demyelinated area of nerve fibers, induce apoptosis of mature lymphocytes, and restore the blood–brain barrier. High-potency corticosteroids have become the standard of therapy for MS exacerbations. Doses of methylprednisolone range from 500 to 1,000 mg/day intravenously for three to seven days, followed by a tapering dose of oral prednisone 60 mg for 10 to 21 days.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2697107/

[cainer]

hi   well i have never heard of it-  i have just done the iv-and the dose pack- and prednisone
   thanks for shareing  tick

[Willowwoman777]

I had my last dose of ivsolumedrol 9 days ago and am still getting jittery, and having trouble controlling my hunger, so I'm not a total fan of solumedrol at the moment. I did ask about ACTH when I was at neuro a month ago after I picked up a brochure for it while I was waiting for my doc. Apparently, this is again being touted as a viable option for handling exacerbations. He gave me the option to try it if I wanted, but decided to just go ahead with solu. I might try it next time.

[needanswers54]

High dose steroids sometimes get people who are paralyzed from acute transverse myelitis back to moving within the week.

Thank God for such miracles.