ACTH... Comments?

[beachcomber13]

Can I get feedback from those who have used ACTH?

When did you use it (i.e. beginning of flare, well into flare, other time)?
Did it help more than IVSM?
Side effects that you think were from the ACTH?

Anything you would like to share would be greatly appreciated!

[beachcomber13]

Thank you so much for your input. I cannot believe the cost of Acthar. I was reading that in 2007 it cost less than $3,000 for 5 mL (I guess it depends on the dosage but that might be five days' worth). Then the cost jumped to $29,000 for the same 5 mL vial!

My insurance denied it, go figure. Acthar said that my insurance company denies their first attempt every time, that they always have to appeal. I guess I'm hoping they will approve it. I did horribly on the IVSM--it made me much worse. Took me about 10 days to recover from it. So if I can do better on Acthar, fine. I don't want IVSM again.

I guess I'm in a flare that won't calm. I just keep getting worse. I'm doing very well with gabapentin to quell the burning sensation in my feet and left leg, and it seems to help with spasticity and fatigue. But I haven't actually gotten better. I've had some ups and downs but overall the trend is downward over the past four months. I guess the question is whether I'm in a flare or not. That's a depressing question.

So the Acthar people are hard at work persuading my insurance company. How kind of them to fight for me, lol.

But my internist wants me not to take Acthar until I see the MS specialist. That's in three weeks.

[Sumanadevii]

I do know insurance companies won't pay for Acthar Gel unless IVSM has been tried and failed.  The reason is due to cost.  It runs about $5,000.00 per shot.  I had been on IVSM for nearly a year taking it every three or four weeks (three days each time with one gram each day).  Finally my body could no longer handle it so I was approved for five shots.

It was much different than IVSM.  Side effects for me?  None.  

I took it during a flare that didn't want to calm.  So two weeks or so later, I ended up in the hospital back on IVSM.  I wouldn't take my story as to what happens to most.  My MS was way way way out of control by the time I was dxed.  Am on Tysabri now.  I fear saying it is working well but haven't had any steroids now in about eleven weeks and still moving.  Hope soon I can brag about the wonders of Tysabri but hesitate after all I have been through.

If you can get your insurance to approve it, I would take Acthar over IVSM any day.  Fingers crossed for you.