Should I Take The Acthar Gel?

[Jane30]

I went to see my neurologist yesterday because, I have been experiencing a new symptom since Sunday. Every time I moved my eyes, I would experience an electric shock. It's not L'hermittes because, I wouldn't get the shock if I moved my neck, just my eyes. Weird. Doc has rx'd Acthar Gel for a couple of days. (I've been on a 5 day course before.) His notes say, "Atypical symptoms and no clear objective finding to suggest MS relapse. However giving if the benefit of doubt we will treat her with ACTHAR gel without oral taper."

My last MRI of brain and spine showed no enhanced lesions. My eyes aren't doing the shock thing today but, not for sure it won't appear again. And I have been doing much better since my last relapse from July this year, which affected my mobility and bladder. Would it be wise to take the Acthar Gel if I'm not having a true relapse? I'm so confused. What is your opinion? What would you do? (I know it won't be a professional one but, I'm curious as to what you think.)

My neurologist is not an MS specialist and he is referring me to the IU Medical Center. My appointment is on Dec. 29th. He thinks he would be better suited for further opinion regarding disease modifying therapies. I am currently on Copaxone 40 mg and have no issues taking the drug.

Thanks for your responses in advance.

[Marco]

I'm sorry you are having a troubled time and I hope it will pass soon! Acthar may be the appropriate medication to help you heal up sooner. For me, I can benefit from a steroid dose pack at ANY time and not just in a flare up. Since the steroids are used to knock down inflammation and reduce spasticity they always helped reduce my symptoms.

• Acthar works differently than steroids. Steroids supplant, and reduce the production of, your natural hormones (aldosterone, cortisol and corticosterone). After a steroid treatment regimen your body slowly increases the production of these same hormones until they reach normal levels.
  
• Acthar does not supplant your natural hormones, but instead boosts the production of aldosterone, cortisol and corticosterone. The increased amount of these natural steroid hormones helps your body reduce inflammation, spasticity, etc. Acthar is also believed to affect the T&B cells that trigger inflammation. As the increased production of your hormones wane, they will gradually return to normal. Since your immune system knows the production levels of your hormones this also helps prevent a steroids crash.

Acthar is considered to be fairly safe and is routinely used in children. That doesn't mean you won't have side effects, but the indication means it's probably not outright poison like some other medications. The biggest drawback to Acthar is the high cost so ensure you know what, if any, payment is required. They do have a financial assistance program, but the weekly cost is still close to a new economy-sized car.


It sounds like your doctor believes this is the proper therapy for you, so it's really up to you. If it was me, I'd take the Acthar and allow your body's natural defenses kick in and help you rid yourself of these current symptoms. Please keep us informed on your decision(s) and progress.

[Temagami]

Be careful- my ins. co. took a while to respond and eventually declined to cover acthar- I would have been stuck with a 30K bill- OUCH! Pretty sure that the stress of that would have sent me into another flare. Instead, I waited and the vertigo went away after about 6 weeks.

[timeuponaonce]

Reimbursement for Acthar Gel & Webcast

You might want to call the manufacturer of Acthar Gel about reimbursement: (Mallinckrodt recently bought Questcor.)
Mallinckrodt/Questcor (Acthar gel): (888) 435-2284 or (800) 411-3065

Some of you might want to watch the recent webcast, "Unlocking the Mysteries of MS Relapses."
Here's the link: http://resourcecenter.msworld.org/ed...f-ms-relapses/

The link is also on the MSWorld Home Page as of Nov. 26th.

Hope this helps!

Time

[Jane30]

I'm sorry to hear that, Temagami. Humana denied my claim at first but, my doctor appealed. I'm not able to do solumedrol. It puts me in the hospital with severe hypotension. Acthar is finally arriving tomorrow (took them long enough). We'll see how my body reacts to this. Like I said I had it before but, it's been a few years. I expect it to be like solumedrol but hoping it doesn't drop my blood pressure to a dangerously low level.