I hope this helps some of the investors here to make a more informative decision on your positions.....yahoo wouldn't accept a copy/paste of the entire page, so I pasted individual comments that I found informative...After reading some of these comments..I'm a lot more confident in Acthar in treating MS...and it is FDA approved after all. Also after reading, I think Aetna's decision is more over money than the well being of the patient.....(comment 15)
(33) Elaine says: (latest from August 20, 2012)
I was just prescribed Acthar Gel injections by my neurologist for 5 days for an exacerbation. I had taken Solu-Medrol before and didn’t work well and lots if side effects including weight LOSS. Doc said this had less side effects and will probably help me. I had a trial dose on Friday and now waiting for Med to come in mail. I read that it works by stimulating your body to produce your own naturally occuring anti-inflammatory hormone. I was feeling better Saturday and Sunday and not so well now on Monday. Hoping to come in mail soon and that it will work for me.
(30) Rachael says: (April 14, 2012)
I have been on Actuary monthly for about a year now for severe MS spacticity. This is the only med that has worked for me. I can bend my legs after using it. But stiffen up when I am not on it. My legs are straight out on front of me. Can’t walk at all without Acthar, but when on it I can walk, drive and pretty much do everything normal. It has been a miracle, life saver for me. I don’t know what I’d do without it. Solumedrol did nothing for me. If you have the chance yo try Acthar don’t hesitate at all!!! I hope your experience will be as life changing as mine.
(4) Lynn says:
I was diagnosed in 1983. At that time, whenever I had an exacerbation which was usually twice a year, I was admitted to the hospital for a 10 day regime of ACTH. That consisted of injections every day, although I do not remember if it was intramuscular or intravenous…I was usually very sick and suffered from severe double vision among other things. But I do remember it was my drug of choice because after about five days, my symptoms were totally gone, and I walked out of the hospital as if nothing was wrong with me at the end of my treatment.
I do know that the list of contraindications were a mile long for ACTH, and that it was a heavy duty steroid. But I have often wished there was a treatment that worked as good for me as ACTH did!
(6) Sophia says:
I used acth recently after having some trouble with steroids. The brand name is called ACTHAR. The nurse told me it works differently than steroids. I did feel much better after being on it for a few days. It is expensive but my insurance covered all of it.
October 3, 2011 at 11:12 pm(7) Deb says:
In 1978 I was, after several years of symptoms, diagnosed with MS. In December of that year I had a very bad exascerbation and was unable to walk more than 4 feet. I received a prescription for oral prednisone…80 mg/day for 10 days. I showed no improvement. My neurologist admitted me to hospital for 7 days of intravenous ACTH. I walked out of the hospital when the 7 days were up. It was a miracle. The only side effects were a little(less than 5 pounds) weight gain, and a tendency to be more emotional than usual i.e. laughing or crying. Nothing has ever made me feel as restored as ACTH. BTW: I am still walking with only a cane.
(10) Chuck says:
I was diagnosed on my Birthday in 1980. My intro to ms included paralysis of my entire body below my neck. The doctors at UCLA said they were going to try ACTH injections to try to pull me into a remission. 2 days after starting the med I was able to move my toes! From then on I kept getting stronger to where I was able to walk with a walker. I am now 30+ years in this disease and can still walk without aid. I have other symptoms(bladder, fatigue, blurred vision, balance) but none that will stop me from having a great life. I can still travel and work part-time and take care of my 3 dogs. I thank ACTH and the MD’s at UCLA for taking the chance and giving me back my life.
(12) Jon Ward says:
My oldest daughter was diagnosed with MS in July 2009. The first things her nurologist did was have her infused with Solumedrol five consecutive days followed by an oral steriod in decreasing dosage for the next 10 days. As a result(?) her blood sugar went to nearly 500 and she was confined by court order to a behavioral hospital for 72 hours because she started acting irrationally and exhibited actions that might result in self harm. Since that time she has taken insulin up to 3 times daily. This summer (July) her nurologist perscribed 5 consecutive injections of Acthar Gel followed by once/month 1ml injections. (Her insurance is paying over $29,000 for 5ml.) Her blood sugar does increase beyond what has become normal for her but with insulin it has never gone higher than 180. She will have her first MRI since starting the Achthar Gel in November 2011.
(15) Nancy D says:
I was given ACTH by IV over three days (I believe) three times during the 1980’s. I remember they called it their “Silver Bullet” and I thought it was miracle stuff. Each time my exacerbations would be very much improved even before the end of the three days and I remember it gave me such energy. The last time I had it was before starting Avonex in 1996. I have done well on Avonex and only have had about three bad exacerbations. With those I had IV Solumedrol and never felt as improved as I had with ACTH. Having MS for 36 years now I don’t have the “attacks” just the chronic progression. They have not officially diagnosed me as SP but I feel my symptoms fit that scenario. The last time I asked to try a three day IV of Solumedrol I hoped it would just help me feel better in general (more energy). It did not. Instead I felt very hyper and emotional. I couldn’t sleep and about 4 days after (there was no oral med given afterward) I had my first experience of what I call “meltdown”. During Thanksgiving I simply stopped being able to function. Couldn’t walk or control functions. I had to send everyone home and go to bed. After a few days I was better but never quite the same. I did some research and asked my neuro about ACTH and he said it’s not used anymore. I have a hunch that the cost of ACTH became much higher than Solumedrol during the 90’s and therefore wasn’t prescribed. I plan to look into it’s availability now since it does appear it’s is still out there.
(17) robin says:
I have been living with MS for 14 years. Just finished a 5 day course of acthar gel 2 days ago. i can not tolerate solu medrol so we tried this to deal with terrible pain and weakness in my left side. My MS symptoms are actually worse than they were before starting the med and the side effects I am still experiencing have been traumatic. Increased blood pressure, extreme water retention, dizziness, difficulty voiding, rapid heart rate, insomnia, muscle pain, exhaustion and ofcourse emotional lability. I am hopefull that once the side effects of the acthar go away my MS symptoms will also start to improve, but it’s been a terrible week on this medication. My insurance co was charged $26,000. My co-payment was almost $2,000. It was not worth it the money or the side effects
There are a lot of other comments...google search "Have You Tried Acthar Gel for an MS Relapse?"
I read all of the responses re: effectiveness of Acthar as a MS treatment and my takeaway is a very mixed bag-some patients got help from the gel-some did not get help and were not satisfied with the drug-over-all I was a little disappointed in the responses-I was hoping for better! rebuttal anyone?
I would definitely put more weight on patients who have taken the drug recently. Would ignore comments from the 70s and 80s. Remember that Questcor completely revamped the manufacturing process for the drug when they took over, it took them years and millions of $ to get the FDA to OK everything. The manufacturing issues was one big reason why Aventis dumped the drug in 2001.