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#1 | |||
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Magnate
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I have not used ACTH.
ACTH has been used since 1978, it's not a new drug but has been used for many years to treat exacerbations. IVSM is the main choice any more for exacerbations but I have read of others who have gone the ACTH route with success. ACTH and oral prednisone were my only options when I was dx'd in 1985. At that time my neuro only used ACTH for progressive types of MS or those who were not helped by oral prednisone. Some information about ACTH: http://www.nationalmssociety.org/abo...cth/index.aspx
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Dx RRMS 1984 |
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#2 | |||
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In Remembrance
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I thought I was getting ACTH in 93, when I was having my end of my loverly remission, exacerbation from hell. But Neuro gave me the newer kid on the block..Solumedrol IV.
I was kind of disappointed, as I had heard good things about ACTH. I often wondered if, when the IVSM stopped working for me, if the ACTH may have done better. ![]() Let us know how it goes, please and good wishes.. ![]()
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~Love, Sally . "The best way out is always through". Robert Frost ~If The World Didn't Suck, We Would All Fall Off~ |
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"Thanks for this!" says: | AynaDee (03-11-2011) |
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#3 | ||
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Senior Member
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Amy,
It was the best medication that I have ever used to resolve an exacerbation. It worked so much faster and better than solumedrol. If given a choice between all medications to stop an exacerbation, it would be my first choice. The amazing thing is that it is easy to use and worked very fast (two days). At the time of my exacerbation I had the same problems that you are experiencing, with the additional problem of not being able to walk all of a sudden. But two days later, after using Acthar, I was physiologically back to normal. -Vic |
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"Thanks for this!" says: |
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#4 | |||
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Member
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Acthar is the 'new' brand name drug that is ACTH which pre-dates IVSM. It does work better for some people, but it is very expensive. It might be a problem to get Insurance to cover it unless IVSM has been tried first and failed.
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Bill SCUBA, the true meaning of Life San Francisco Maru 2009 USS Monitor 1996, 1997, 1999 Andrea Doria 1996, 1998 USS Wilkes Barre 1991 |
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"Thanks for this!" says: | AynaDee (03-12-2011) |
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#5 | |||
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Member
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I really appreciate all the feedback, because drugs scare me, and none of my fellow ms-ers in town have even heard of the drug. I am definitely more comfortable with it now, but the nurse still hasn't called me to set up pick up and tutorial on the injection, so I am not sure what's going on. it seems we have alot of flaws in our medical system here, so I will probably have to call back Monday to remind them they were doing so.
Again, Thank you soooo much everyone! ![]() |
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"Thanks for this!" says: | SallyC (03-12-2011), Twinkletoes (03-12-2011) |
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#6 | |||
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Member
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I took it a few months ago. One 5mL bottle. 1mL per day for 5 days was dose but .6 - .7 ws all I could fit in my modified Copaxone auto injector that I use for weekly testosterone shots so it took 8? days. It shouldn't matter cause it's long lasting. Did it help more then IVSM? I doubt it AND the cost for that 5mL bottle is $25,000! I won't do it again since IVSM is so much cheaper to insurance with same results, for me anyway.
Neuro told me it works by stimulating gland to produce more of whatever where as IVSM suppresses production, just like testosterone I take slows my teste's production. Your body knows levels and trys to adjust. Salt intake must be cut to a minimum. I can't stress this enough. I eat quite healthy and boy was my mouth dry (started Dry Mouth thread) and still is during the night. Increases appetite which i'm cool with because I exercise all I can and muscles like fuel. I'm still losing feeling on a weekly basis and i'm on Ty with occasional Copaxone shots. Sucks. I feel (or don't) your pain. |
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#7 | |||
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Member
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Wow. $25,000 is ALOT of money
![]() I still haven't heard anything from my doctor. I really don't want to treat this flare, and try and come out of it naturally, maybe eating alot of natural anti-inflammatory foods? I just hate doing drugs, they turn me into a horrible person, and then takes quite some time after I'm off the drug to get back to normal. This flare is definitely getting worse though so I am not sure if the no drug route is even an option. Everyday I am more and more numb. It seems the numbness is spreading and water from the shower is a horrible sensation right now. GRRRR to MS. ![]() |
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"Thanks for this!" says: | Twinkletoes (03-14-2011) |
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Thread | Forum | |||
Acthar Gel Anyone? | Multiple Sclerosis |