Acthar; has anyone had to use this?

I finally got in to see my neurologist on Thursday, and (since the IV steroids did absolutely nothing for my earlier flare) he wrote a script for ACTHAR gel injections.

What he DIDN'T tell me was how outrageously EXPENSIVE it is. Funny, b/c he made no bones about how expensive my Provigil is (...current flare makes it basically useless).

So....I'm waiting to hear back from Curascript to see if they can get it ok'ed with my insurance. In the meantime, I'm still suffering from a really bad flare (extremely weak, barely able to care for myself, much less my family). I'm wondering if it is worth all that money; if it will actually work to help me out of this second (rebound?) flare.

Has it helped any of you?

[babygirl_vic]

My neuro tried to get my insurance to cover it, but had no luck, couldn't find an assistance program to help pay for it either. Sorry you're having a flare. Hope you can get it covered and let us know how it works!!

My neuro swears by it, says he has had 3-5 patients that have just done great on it and their range of motion has improved greatly and fatigue has gotten better and he says one patient swears he hasn't felt better in years!! I was excited because of the way my neuro talked it up but I can't afford it and if I can't get it I just can't get it.

[Jane30]

Working so far for me. Finished last dose yesterday. I detest Solu-Medrol. I hope you can get your hands on it soon and feel better.

[wkikta]

Acthar, ACTH, was the Medication of choice years ago, before Solu-Medrol. Acthar is fairly new and is not covered by most Insurance.

[kimik1]

I just went to a presentation by QuestCor (I think that's their name), the company that makes ACTHar gel. They claim incredible patient support, even up to and including if the patient balks at all at copay, saying "wow, that's really a lot, I can't really afford that", the company supposedly will pay the entire uncovered amount, including the patient copay.

My physician just wrote for it, too, but because my flare was acute, and my first neuro (I changed mid flare due to unresponsiveness) did nothing, we had to go ahead with the solumedrol, as we are waiting for approval for the ACTHar gel.

I documented my intolerance of the solumedrol religiously and have written a letter to the insurance company contesting any denial based on my intolerance to the solumedrol. Anyway, if you can contact QuestCor directly (I believe their ONLY product is ACTHar gel), you might have more luck with patient assistance for cost.

Good luck and if you end up on it, do post your results, I'd be very curious!

Thanks,
Kim

[Pam3.1]

Does anyone know if Acthar is covered under medicare?? Not too happy with my dr's office. I asked for a solumedral treatment LAST Thurs. for an exacerbation(1st in a couple of years) and am now waiting to see if this is covered.

[kimik1]

I was totally ramped up to submit a letter of appeal when Acthar was (in my mind) inevitably refused by my insurance. What a surprise when, yesterday, I got a call from Curoscript saying it had been approved and that my co-pay would be only $60.00 (of the $30,000 cost, yes you read that right, $30,000 for one vial). I balked at the $60.00 copay (as instructed by the QuestCor rep from whom I learned about Acthar) and was transferred to the Chronic Illness Fund, where I was almost immediately (after a few brief questions) "conditionally approved" for medication assistance, which will now reduce my copay for this $30,000 medication to $10.00 in the future and free this time.

I don't know about Medicare; I can only speak for my insurnace, and I know only this. In my neurologist's office, I'm only the second person to be approved for it (he's only written 6 scripts for it so far), and four are currently waiting to hear.

Crazy.

[lh3lm3]

Hi everyone. Has anyone had different or new experiences with using Acthar since you last posted? Trying to figure out if I should take it.
Thanks,
Lisa

[gresh3]

I had started an exacerbation in March and after 7 cancellations by my neuro finally got in in June. I told her that the last time I took IV steroids that they did not help at all and I actually got worse. She asked if I would be willing to take IM shots and I said sure so she filled out the paperwork and said it would take a couple of weeks. I knew nothing about it at all. I got a pamphlet and found out that it
was actually ACTH I was so excited. I had an allergist that did really neat and unusual treatments and he used to give it to me and it helped and it was a really cheap treatment. Not ANYMORE. My dad had COPD and he gave it to him also. I hope my insurance approves it as soumedrol makes me worse. Will keep everyone updated if I get it.

[lh3lm3]

I hope it does wonders for you. I will look forward to your update.

[04blackcobra]

It was getting difficult for me to come in for the solumedrol infusions and I tried the Acthar. It was cover but wasn't$30,000 as someone suggested back then. It was an IM injection daily for 5 days repeated every month. After the third dose my feet and legs swelled very large and I stopped it and it took a week to go away. I made time to get the infusions until I went on tysabri and now gilenya. I never had any swelling with the Solumedrol.

[MomtoMiracle]

Hi there,

I took ACTH a few years ago. Compared to solu-medrol, it was a dream. Sure you have to get over giving yourself an IM shot, but the side effects are much better. There are still steroid-ish side effects, but for me were nowhere near the IV solu-medrol or even the oral prednisone.

Hoping you get some relief soon!!

[Pinker]

I am happy for those that Acthar has worked for. BUT I finished a 5 dose Sunday and today is Wed and I am much worse off. I am having all sorts of severe side effects, called Nuero daily with no call back from anyone. He put me on with since the solu-medrol didn't help all that much last fall. I was approved, as it was super expensive, and that in all took a week. I had been in a flare up for about 6 weeks so far. Now my symptoms are much worse. I feel drunk and dizzy all of the time, driving is like driving drunk so not very safe, can not get things straight in my head, my heart feels like it is beating really hard in my chest (but my BP and pulse on my monitor reads ok) So tired but can't sleep so that this horrible right there for sure, I have more numbness in edges of both hands now and the bottom of my feet, I walk more now like I am tipping the bottle than before. I have had to uninate constantly and have had runny bm's for 3 days also, always thirsty (my blood sugar is normally on the low side so I am not diebetic) extreme depression and crying, much much worse than coming off of steriods, super extreme exhaustion to the point to not being able to funtion well at all, worse than my worse MS times, legs, especially my right one feeling so heavy I can hardly lift them, the feeling of a huge knot of lump on my lower back where there is not one, pain in my kidney area. I am a wreck. I am so mad that I can not get a hold of my dr that I will just have to drive there tomorrow and show up and try and get some help. So for me, no way on earth this was worth it. I am glad that it does work for others and hope you will be able to continue to use it. If you have never used it, please do research prior. I thought that I did, but never dreamed that I would have most of the side effects at once.

[jw90019]

I have insurance through WellCareand they approved it. It is expensive but it seems to be doing me some good.

Originally Posted by kimik1

I was totally ramped up to submit a letter of appeal when Acthar was (in my mind) inevitably refused by my insurance. What a surprise when, yesterday, I got a call from Curoscript saying it had been approved and that my co-pay would be only $60.00 (of the $30,000 cost, yes you read that right, $30,000 for one vial). I balked at the $60.00 copay (as instructed by the QuestCor rep from whom I learned about Acthar) and was transferred to the Chronic Illness Fund, where I was almost immediately (after a few brief questions) "conditionally approved" for medication assistance, which will now reduce my copay for this $30,000 medication to $10.00 in the future and free this time.

I don't know about Medicare; I can only speak for my insurnace, and I know only this. In my neurologist's office, I'm only the second person to be approved for it (he's only written 6 scripts for it so far), and four are currently waiting to hear.

Crazy.

I got a flyer in the mail. $30,000? The mail should have had more gold leaf and they didn't even say whether there would be dinner or free parking. $30,000? I didn't realize. Having a warm body and MS can be very attractive to some companies.