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Medications & Treatments For discussing medications and all treatment methods

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  #16  
Old 09-13-2012, 10:57 AM
Daisy Dead Petals Daisy Dead Petals is offline
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Join Date: Feb 2010
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Day two of five on Acthar. Cannot tolerate solumedrol. Felt better this morning than I have for months. Low spasticity and less muscle pain. Less fatigue and dizziness.

It's the after part I'm concerned about. I hope after the five days I don't go into the same terrible weakness and sluggishness as with the Solumedrol.

Was SHOCKED to see the sticker price but my Medicare plan covered it.
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  #17  
Old 10-01-2012, 03:33 PM
Bzliteyear Bzliteyear is offline
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Daisy,
Hope you're feeling better.
Glad the drug is covered by medicard.
Curious how you're doing after the Acthar?
Pls share.
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  #18  
Old 10-10-2012, 08:33 PM
mtnwillow mtnwillow is offline
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Please share your experiences with Acthar Gel. I am waiting approval by my ins company. After reading about some of the severe side effects, I am afraid to take the drug.
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  #19  
Old 10-11-2012, 04:17 AM
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kimik1 kimik1 is offline
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Join Date: Aug 2011
Location: Missouri
Posts: 73
Hi mtnwillow,

I have now taken Acthar Gel twice; the first time was a five day course sub q in July, the second a 10 day course subq in September, for the same relapse which has not yet resolved.

I have had very few side effects. I did have some nausea with the first 5 day course and a decreased appetite, but not with the 10 day course (I can't explain why the difference). I broke out with acne a little bit (but not nearly so bad as the last time I took solumedrol IV). My blood sugars were SLIGHTLY elevated (and by slightly, i mean my normal fastings in the morning are 80s-90s and I had some that were 110, 104, etc, with a post prandial once at 160).

I can't say for sure if it helped. The first five day course did not. After that, I did three days if IV solumedrol, which also did not help. My relapse continued to worsen over the next couple of weeks, and my symptoms continued for (now) 13 weeks and counting. After the 10 day course, which I finished two weeks ago this coming Friday, I started to notice some improvements; however, at the same time I started the 10 day course, I also went on Cymbalta for nerve pain/severe nerve irritability and started taking clonazepam 0.5mg at night for sleep, as my sleep had been severely disturbed throughout the relapse.

I feel like the symptoms of the relapse are beginning to abate some. The severe feeling of unwellness is lifting, the profound weakness in my core and upper back is improved, the nerve irritability is all but gone. I stll have many symptoms that came with the relapse, but they are better.

I cannot say whether it is because of the Acthar Gel or not, but I am inclined to think it had something to do with it, as the Cymbalta and improved sleep, I don't believe, would have had such a significant impact as I've experienced.

I wish I could give you more decisive results/answers, but that has been my experience so far. I would not be afraid of the medication; it has a huge safety profile going back many, many years (it used to be first line treatment for relapses many years ago).

Good luck; let us know what you choose and how you're doing with whatever choice you make!

Thanks,
Kim
kimik1
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  #20  
Old 10-11-2012, 05:27 PM
mtnwillow mtnwillow is offline
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Thank you, Kim. I am concerned mostly about the nausea as I suffer daily due to the location of a brainstem lesion. I take Zophran everyday in order to deal with this problem. I am also concerned as Acthar Gel is supposed to be contrindicated for those of us with osteoporosis and hypertension.

lol I told my family that if the insurance would give me the purchase price of $50, 000, I would feel better immediately.

I am glad that you are feeling better but wonder if time may not deserve some credit.
I must also say that Cymbalta has done wonders for my pain. I missed 2 doses this past week and suffered a full day of unrelieved pain.
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  #21  
Old 10-11-2012, 07:58 PM
Daisy Dead Petals Daisy Dead Petals is offline
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Quote:
Originally Posted by Bzliteyear View Post
Daisy,
Hope you're feeling better.
Glad the drug is covered by medicard.
Curious how you're doing after the Acthar?
Pls share.
Hi, Frankly I didn't notice anything one way or the other with the Acthar injections. Made no difference in my case.
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  #22  
Old 10-11-2012, 09:49 PM
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EduKate105 EduKate105 is offline
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Glad to be done with ACTHar

I started out with the IV steroids, but ended up being allergic to them. (Turn bright, bright red all over.) So, when I was still on Rebif I used the ACTHar gel to treat my exacerbations. I hated having to do more injections on top of the ones I was already doing. The ACTHar gel worked okay, and I was fortunate that insurance covered it. I don't remember exactly but the copay was less than $50.

I made the switch to Tysabri a year ago and couldn't be happier. I just go and sit with an IV every four weeks, no more injections and no more additional treatment for flare-ups!

I know it's not for everyone, but I much prefer it to my prior treatment of the disease AND the relapses...
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  #23  
Old 10-13-2012, 08:48 AM
newbie but goodie newbie but goodie is offline
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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.
$30,000 is absolutely insane Do they think us folks with MS are sitting around counting our gold bars or something? Sheesh. I have been getting emails about acthar and I will happily toss them in my spam folder for all it costs.
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