ACTHAR for MS flare/ anyone tried this?

[lynnkay4]

My neuro's nurse called me back this afternoon as I had called about my latest symptoms. She explained that they have been using ACTHAR recently for MS flares and are having great success with this drug, especially for people like me who don't tollerate prednisone well.

It's an older drug that was used 30 years ago for MS. It stimulates glands to produce your own steroids. The side effects are usually minimal compared to the pills or IV.

I am still worried about the side effects. I wondered if anyone here has ever tried this medication and how they reacted to it. I did some research on line and it gives a pretty long list of side effects. But of cousre that's with anything now.

She was very excited about how their patients are responding to the drug. One woman who took all kinds of prednison and IV therapy tried this medication and did very well and hasn't had a flare in over 7 months.

Any information you might have would be appreciated.

Thanks and be well.
Lynn

[Sequoia]

Hi Lynn,

If you do a search of this forum, you will find several threads on Acthar.

[lynnkay4]

Thanks, I'll see if I can find some thing..

[wkikta]

The Insurance will probably fight it since it is very expensive. ACTH (Acthar) was used before Steroids became available. For some people it does work better though.

[changetheworld]

Currently on Acthar right now. Last injection is this evening. I inject it myself into the muscle of my legs for 2 weeks. Side effects are different I am sure with each person. I have had dizziness and water rentention mostly. Up several times a night to go to the bathroom may because of water retention. Biggest downside is low to no sodium diet. Everything has sodium...even milk. Have been eating fruit/veggies/rice/pasta. You can find a list of foods & what has sodium online. Not sure if Acthar is going to clear up my eye issue yet or not. Time will tell. Good luck!

[daisy.girl]

changetheworld.....I am wondering how you are are completing the acthar? Did you do just 5 days?

I am to start this soon and am wondering about lasting side effects, etc.....

I take copaxone injections, so I wonder how they handle two shots in one leg?

Did you dr say anything about doing it again, or is it just a one time thing for 5 days?

[daisy.girl]

anyone here try the acthar vs the IVSM? What are the difference in side effects?

[daisy.girl]

anyone?? I really would appreciate the feedback.

[lh3lm3]

Hi daisygirl. Did you ever take the Acthar? I am in the same position you were when you created this post and am not sure if I should move forward with taking the medication. Thoughts?

Thanks!
Lisa