NeuroTalk Support Groups - Anyone done ACTHAR?

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- - Anyone done ACTHAR? (https://www.neurotalk.org/multiple-sclerosis/146473-acthar.html)

Quote:

Originally Posted by Gabriella7 (Post 767219)

Ayna, I feel better now that I know some financial help is available if my 2 insurances don't cover total cost. My last neuro wanted me on IVIG but the insurance would not cover the cost since it is not actually FDA approved for MS. I believe the cost was going to be $10,000 a day to treat. Only a rich person could pay for that.

I found an article on the NMSS site and it is approved by FDA for MS so I am relieved for that information. I've had MS for well over 30 years but it was not diagnosed until I was already in the progressive/relapsing stage. The new neuro calls it SPMS but I don't really care what it is called, just make me better!

Are you heat sensitive? I live in the deep south so the summers are murder and I basically stay in a room with AC set at 68.

Blessings,
Gabriella

I am very glad to hear that that takes a weight off your chest.
It's crazy that they price our medicine the way they do, I honestly feel my neurologist wouldn't even be able to afford the costs of this disease. It's whack.

Heat sensitive-absolutely. It sucks very bad too. I live in IL and our summers are so hot and HUMID, it kills me. So in the summer time I can't go outside, as soon as I do the symptoms start and only continue to grow. and it usually ends up having to have a 5 day IVSM treatment followed with 3 week prednisone taper. I hate it because I am trapped inside for a whole season and don't get to partake in the fun summer activities. Another thing for MS to rob me of.

It has taken me forever to get back to posting as I found out I also have myasthenia gravis. The neuro ordered blood work while I was in the hospital for the IVSM and the test for MG came back really high with 0-17 being in the normal range for the antibodies test and mine was 77.

So I am getting the IVIG and the insurance coverage will cover the cost! IVIG is officially the treatment for MG. Isn't this a wonderful outcome for treating both the MS and the MG. I can't believe the cost for the IVIG is $10,000 a vial and I will be having it for 5 days straight.

I actually started it today along with some solu-medrol and benydryl in the mix. Maybe I will start to feel like a human being again soon. It makes the next five days as an outpatient staying at the Infusion Center all day a treat. My husband is driving me as my legs are so weak I don't trust myself to drive at the moment.

Gabriella

Quote:

Originally Posted by Gabriella7 (Post 778657)

I am very sorry to hear of the MG. But at least the insurance will cover that vial! That is rare, yet amazing! solu-medrol makes me crazy, but it does get me back on my feet pretty quick like. It just destroys my appearance and emotions, lol.

Hang in there dear! and thanks for the update! :hug: