Has anyone tried Acthar?

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Butterflake
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Date Joined Jun 2006
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   Posted 9/14/2013 10:04 AM (GMT -6)   
Hi Everyone. I've been feeling badly for many months and this week when I saw my rheumy he suggested I try Acthar. It's adrenocorticotropic hormone that is injected twice a week. I had never heard of it. Does anyone have experience taking this drug?
SLE '05, Sjogrens, fibro, Raynaud's, major depressive disorder, CNS problems, diastolic heart failure, GERD, 1st stage kidney disease. Many meds: better living through chemistry

Donna
Sjogren's Moderator

oreo11
Regular Member


Date Joined Feb 2011
Total Posts : 399
   Posted 9/14/2013 11:18 AM (GMT -6)   
 
 
Hi Donna,
 
     I have not heard of this drug, but I am curious.  What is it and how does it work???  Ever since the Benlysta failed, I have been wondering if there is anything that I could turn to that would allow me to reduce the Prednisone.  I saw the Rheumy yesterday and she feels that we can reduce my Prednisone down to 9 mgs. every other day. I am a little skeptical because the 10 mgs. works so well and every time I reduce, I go through the pain of withdrawal.  I hate the way it makes me feel!!!  I am Osteopenic and we want to preserve my bones, so I am in favor of trying.  I just want something else to help relieve the awful symptoms I feel.  I have exhausted all of the other big gun medications!!!  So if you find something out, I would love to know.
 
Love, Laura

Lynnwood
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Date Joined May 2005
Total Posts : 7723
   Posted 9/14/2013 2:19 PM (GMT -6)   
Never heard of it, and when I tried to research, I found this clinicaltrials.gov/ct2/show/study/NCT01753401 which sounds like they are just now initiating a trial.

This is another helpful-looking website www.acthar.com/other-indications.html.

Cheers!
Lynnwood, Lupus & Sjogren's Moderator
DIAGNOSING LUPUS & LUPUS RESOURCES
"Life is far too important to be taken seriously" - Oscar Wilde

Butterflake
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Date Joined Jun 2006
Total Posts : 1650
   Posted 9/15/2013 9:09 AM (GMT -6)   
Hi Lynnwood and Laura. Here's what I learned from my rheumy and some Acthar research I did. ACTH is the hormone produced in the pituitary gland that induces the secretion of various types of steroids. ACTH(ar) is collected at pig slaughter houses from pig pituitary glands. It's been used since the 1950s for infantile spasms anhtd much later was found to help other disorders such as MS and polymyositis. Questcor bought the rights to the drug for $100,000 in 2001. Manufacturing of Acthar is complex, but doesn't cost anything near the $28,000 a vial that they charge.
 
I will inject it into my muscle for 5 days straight and then twice a week. It's supposed to make my pituitary produce cortisone. It shouldn't be given to patients with osteoporosis, but apparently osteopenia is okay.
 
I'm still pretty leery. I'll keep you posted. Love, Donna 
 
SLE '05, Sjogrens, fibro, Raynaud's, major depressive disorder, CNS problems, diastolic heart failure, GERD, 1st stage kidney disease. Many meds: better living through chemistry

Donna
Sjogren's Moderator

Lynnwood
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Date Joined May 2005
Total Posts : 7723
   Posted 9/16/2013 11:27 AM (GMT -6)   
Yikes! For $28,000 a vial I hope it's a BIG vial good for months of treatment!! Or I hope you get into a drug program for some financial relief.

Let us know if you decide to try it -- I can't say I like the side effects or some of the other things I read.

Cheers,
Lynnwood, Lupus & Sjogren's Moderator
DIAGNOSING LUPUS & LUPUS RESOURCES
"Life is far too important to be taken seriously" - Oscar Wilde

Bsime
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Date Joined Apr 2006
Total Posts : 1344
   Posted 9/16/2013 5:28 PM (GMT -6)   
As others have said acthar has been around for over 50 years.  Basically it tells your body to produce more steroids.  Many in the myositis community have taken it and it is too early to tell how successful the treatment it.  Questcor also provided financial assistance to those who cannot get it approved or cannot afford it.
 
 
It has been used for other diseases and primarily by neurologists.  Over the past year Questcor has made big efforts to educate rheumatologists to prescribe it to their patients.
 
Bill
 
 
MCTD (SLE Lupus, polymyositis, scleroderma). Diagnosed 2005. Kidney, liver, GI tract, dysphagia, raynauds, barretts esophagus, quadriplegic in 2005. Recovered and now active in downhill skiing, golf, hiking. Meds: amlodipine, benezapril, omeprazole, potassium, folic acid, vitamins, maxide.

Remain Optimistic and you can overcome.

Barbara Lee
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Date Joined Sep 2003
Total Posts : 2889
   Posted Yesterday 7:36 PM (GMT -6)   
Donna:

I hadn't heard of this medication until you asked about it. I'm guessing I'll be left out on this one as I do have osteoporosis big time. It's a real shame that drug makers can charge so much for medication it just not right.

Please let us know if you start taking this and if you do I hope that you can qualify for assistance with paying for it. Keep us updated on how you do with it if you start it.

Hope you had a good day and I hope you're beginning to feel somewhat better.

Hugs,
Barbara
DX- RA, Lupus, Fibro, LGL Leukemia, Pulmonary Hypertension, Bells Palsy, Gastroparsis, Blood Clots, Glaucoma, Chronic Pericarditis & Pleurisy, Severe Anemia. Way to many medications to list.

aimsgirl16
Veteran Member


Date Joined Jun 2008
Total Posts : 1470
   Posted 9/25/2013 1:02 PM (GMT -6)   
Hey Donna,

I actually have a friend (amytx) use it for her kidneys issues due to lupus and she has had excellent results. I believe she had her last dose a month or two ago and everything is still looking good.
Amy
Lupus Moderater


dialysis from lupus nephritis

Butterflake
Veteran Member


Date Joined Jun 2006
Total Posts : 1650
   Posted 9/28/2013 8:53 PM (GMT -6)   
Hi Barbara, Bill, and Amy. It's good to hear that someone has had excellent results with Acthar. A nurse at my rheumy office said they've had a few patients who have done very well taking it.
 
I appreciate the info Bill. I didn't know Questcor has been pushing the drug with rheumys so recently.
 
Questcor told my rheumy that they would give it to me for free, but I have been so outraged at what they are charging others that so far I've declined to take it just on principle.
 
I've been with my rheumy for 7 years. During my recent visit I told him that my dermatologist recommended another rheumy. My rheumy knows him and was very gracious saying it's always good to get another doc's insight. I'll keep y'all posted. Love, Donna
SLE '05, Sjogrens, fibro, Raynaud's, major depressive disorder, CNS problems, diastolic heart failure, GERD, 1st stage kidney disease. Many meds: better living through chemistry

Donna
Sjogren's Moderator

Bsime
Veteran Member


Date Joined Apr 2006
Total Posts : 1344
   Posted 9/28/2013 11:06 PM (GMT -6)   
Until very recently it was primarily neurologists who were prescribing acthar.  Most rheumys should know about it now but I would guess that many have no experience with it.  The acthar rep talked to the myositis support group I run and Questcor has also been generous to the Myositis Association.  Not sure if they are interacting with LFA or not.
 
If someone has financial problems using acthar Questcor has a large amount of money set aside to subsidize a needy patient.  Don't know what their requirements are.
 
 
Bill
MCTD (SLE Lupus, polymyositis, scleroderma). Diagnosed 2005. Kidney, liver, GI tract, dysphagia, raynauds, barretts esophagus, quadriplegic in 2005. Recovered and now active in downhill skiing, golf, hiking. Meds: amlodipine, benezapril, omeprazole, potassium, folic acid, vitamins, maxide.

Remain Optimistic and you can overcome.

claireissa
New Member


Date Joined Aug 2006
Total Posts : 9
   Posted 1/21/2014 9:12 PM (GMT -6)   
Hi Everyone -

I've been trying to find info on Acthar and found this forum. Haven't posted in awhile, good to know the community is still here :)

So my rheumy just recommended Acthar as a last resort treatment for me. This past year I've tried both Rituxan and Benlysta (along with CellCept, prednisone, and Plaquenil daily), but there has been no improvement in proteinuria. I've refused treatment with Cytoxan, so this is pretty much my best option. I'll keep you updated as I start my treatment.

Regards,
Claire

Butterflake
Veteran Member


Date Joined Jun 2006
Total Posts : 1650
   Posted 1/23/2014 7:40 PM (GMT -6)   
Hi claireissa. I decided not to take Acthar. Instead I went to a highly recommended rheumy who tested me for everything and found that my IgG was low, so I'm going to get gamma globulin infusions.

I hope your Acthar goes well Claire! Love, Butterflake
SLE '05, Sjogrens, fibro, Raynaud's, major depressive disorder, CNS problems, diastolic heart dysfunction, GERD, 1st stage kidney disease. Many meds: better living through chemistry

Donna
Sjogren's Moderator
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