Anyone done ACTHAR?
 

I am in another flare right now. Which really makes me want to STOP taking this stupid DMD because I don't feel I should flare all the time on a DMD, but whatever I'll keep it up....

So I am dealing with numbness in my usual places but on top of the usual, yesterday the numbness had extended from my hip to shoulder on the right side of my abdomen and that's new, then today for the first time ever, I experienced the bowel dysfunction :eek:

I am not cool or okay with this. AT ALL. And I am going to be honest, I really want to cry right now, but I am NOT going to. I feel like my MS is just eating me alive.

So since my doctor knows I hate drugs and it's like pulling teeth to get me on them, they came up with a different solution vs. solu-medral/prednisone taper.

They are putting me on an inject-able drug called "Acthar".

Have any of you tried this drug? I am very scared. But she said I won't have to worry about thrush, the manic moods, blood sugar fluctuating, and all the other negatives to prednisone/solu-medral.

I just want to be normal again. I don't like the 'new normal'. But I am just going to stay as positive as I can..

Thanks.

I have not used ACTH.

ACTH has been used since 1978, it's not a new drug but has been used for many years to treat exacerbations. IVSM is the main choice any more for exacerbations but I have read of others who have gone the ACTH route with success.

ACTH and oral prednisone were my only options when I was dx'd in 1985. At that time my neuro only used ACTH for progressive types of MS or those who were not helped by oral prednisone.

Some information about ACTH:
http://www.nationalmssociety.org/abo...cth/index.aspx

I thought I was getting ACTH in 93, when I was having my end of my loverly remission, exacerbation from hell. But Neuro gave me the newer kid on the block..Solumedrol IV.

I was kind of disappointed, as I had heard good things about ACTH. I often wondered if, when the IVSM stopped working for me, if the ACTH may have done better.:confused:

Let us know how it goes, please and good wishes..:)

Amy,

It was the best medication that I have ever used to resolve an exacerbation.

It worked so much faster and better than solumedrol.

If given a choice between all medications to stop an exacerbation, it would be my first choice.

The amazing thing is that it is easy to use and worked very fast (two days). At the time of my exacerbation I had the same problems that you are experiencing, with the additional problem of not being able to walk all of a sudden. But two days later, after using Acthar, I was physiologically back to normal.

-Vic

Acthar is the 'new' brand name drug that is ACTH which pre-dates IVSM. It does work better for some people, but it is very expensive. It might be a problem to get Insurance to cover it unless IVSM has been tried first and failed.

thank you everyone!
 

I really appreciate all the feedback, because drugs scare me, and none of my fellow ms-ers in town have even heard of the drug. I am definitely more comfortable with it now, but the nurse still hasn't called me to set up pick up and tutorial on the injection, so I am not sure what's going on. it seems we have alot of flaws in our medical system here, so I will probably have to call back Monday to remind them they were doing so.

Again, Thank you soooo much everyone!

:grouphug:

I took it a few months ago. One 5mL bottle. 1mL per day for 5 days was dose but .6 - .7 ws all I could fit in my modified Copaxone auto injector that I use for weekly testosterone shots so it took 8? days. It shouldn't matter cause it's long lasting. Did it help more then IVSM? I doubt it AND the cost for that 5mL bottle is $25,000! I won't do it again since IVSM is so much cheaper to insurance with same results, for me anyway.

Neuro told me it works by stimulating gland to produce more of whatever where as IVSM suppresses production, just like testosterone I take slows my teste's production. Your body knows levels and trys to adjust.

Salt intake must be cut to a minimum. I can't stress this enough. I eat quite healthy and boy was my mouth dry (started Dry Mouth thread) and still is during the night. Increases appetite which i'm cool with because I exercise all I can and muscles like fuel.

I'm still losing feeling on a weekly basis and i'm on Ty with occasional Copaxone shots. Sucks. I feel (or don't) your pain.

Wow. $25,000 is ALOT of money :(

I still haven't heard anything from my doctor. I really don't want to treat this flare, and try and come out of it naturally, maybe eating alot of natural anti-inflammatory foods? I just hate doing drugs, they turn me into a horrible person, and then takes quite some time after I'm off the drug to get back to normal. This flare is definitely getting worse though so I am not sure if the no drug route is even an option. Everyday I am more and more numb. It seems the numbness is spreading and water from the shower is a horrible sensation right now.

GRRRR to MS. :mad:

Here is the good news about the price:

You can have your neurologist negotiate the price down for you. My neurologist did (and said it was a common practice to do so). My cost was $500, and that was without insurance. After further negotiations because of my lack of insurance at the time, the absolute final price was only $250. Furthermore, I know others who have reported even lower out-of-pocket costs.

Try the negotiations route.

-Vic

Thanks for that advice! I didn't know negotiating prices was even an option! :) I was called by the man from the acthar company today so I believe I am in the process of getting registered. I'm still really not looking forward to this, I hate what steroids do to my body.