Acthar

[hreynolds29]

Anyone taken it?

My doctor wants me to take it for 5 days to help with my numbness Im getting all over again.

Toes, feet, legs, waist and not left hand...

Thoughts on it??!!

[hreynolds29]

Well I have been taking Acthar for 3 days now and I still have no difference in the numbness I am feeling.

The nurse didn't explain anything to me about recovery turn around....

[Guitar_grrrl]

It blows me away that ACTH is so expensive - it's quite an old drug.  but as the song says, "Everything Old is New (and rebranded) Again". Durnit!!

[Jifr]

Yep. I did feel that way with the ACTH too but it didn't start immediately and it didn't last as long.

You have to manually inject the ACTH yourself unless you have a helper.

I hope you have great results!

[hreynolds29]

Yes I use the autoject! Thank god lol!

Ahh okay well, I'm waiting for the process to finish up with the organization that is paying for it for me and then I will schedule the nurse to come out.

Ooo bummer :( yea I didn't have a good reaction at all, in fact after I got done with the 5 day infusion process I felt worse and the whole time it made me feel sick and groggy and afterwards my symptoms intensified.

It is not something I want to do all over again.

[Jifr]

Copaxone is an under the skin injection.  (Do you use an autoject?)

The Acthar goes into the muscle.

I had some of the same side effects from the Acthar that I had with IVSM (Cushings type) but in the end I felt like a new person. Some of my oldest symptoms got better.  The neuro I had at the time said she'd heard that from other patients as well..  They think the Acthar works differently and it's worth studying.

The nurse is supposed to come this morning to get me setup on IVSM.  :-/

[maxthecat43]

I haven't taken it, but I've been to a dinner presentation for this drug.  It sounds like a very nice alternative to IVSM, but only if you have very good insurance!

[hreynolds29]

Yes I did not respond well the the steroid IV infusion at all so my doc told me he wants me to do this one!

HA yes super expensive, my co pay is $2,294 YIKES!! But they gave me a number to a place called Chronic Disease Association that helps with co pays and I qualified for $0!! When you say IM injection what do you mean?! If you mean inject myself then yes he did tell me that. Which is fine cause I am currently on Copaxone so I'm already doing injections to myself everyday ugh :/....

[Jifr]

Hi There.....

I've been on it once.

It's EXTREMELY expensive.  5 digits expensive for a tiny vial.

Hopefully they told you it's an IM injection.

I've heard some people call it their magic elixir.  They were extremely happy with the benefits.  I had an okay experience on it.  I think I may have posted about it previously.

I hope it helps you feel better.  

Jen