My Rheumy has put me on Acthar Gel. It is given 2 injections a week. Has anyone else been on this and / what is your experience?
A friend of mine takes this for polymyositis. She has a disease that causes inflammation in the muscles. She went from not being able to walk and unable to get out of a chair without assistance to going back to work as a respiratory therapist part time. I was looking into taking it for Lupus but wasnt sure about it. I hope it works for you and I hope you share your experience.
I took it for multi organ serositis last year. It helped but not sure it was worth all the weight gain. I had been on high dose prednisone after a ten day hospital stay. I had gained about 10 pounds from 40mg prednisone a day but quickly put on 25 more once the Acthar began. I was in severe pain and very sick with pericarditis, peritonits, pleuritis with effusions etc.
I have heard many say it was a life saver for them, but for me it didn’t seem to help more than high dose oral prednisone did. I can’t blame all my weight gain on Acthar. I couldn’t eat solid foods at the time so I had lots of smoothies and shakes so I was eating far too much sugar. Again, there are many that it helps but it just wasn’t for me at that time.
Did you get insurance to cover it? Mine denied it, but the Dr was able to get it for me at no cost direct from the drug company. It is insanely expensive! Best of luck. I pray it helps you!
I’ve had the crazy weight gain from prednisone a couple of times before. The worst was one Christmas, when it was really hard to not eat all the cookies and candy that were lying around all over the place! It’s a good time to start strategizing how to avoid all the sweets that are about to be everywhere we turn. I’ve never heard of acthar gel.
I just started Acthar gel last month for the lupus. I noticed improvements right away. I've been able to work 30 hrs/week job (went from 0 hours for the last two years) and I havent been experiencing joint pain as the winter has started (when I usually do). I'm not saying it's cured me. From the experience of my 1stmonth i've noticed the meds work on a cycle for me. When i take the injection I get energy for a few days and then it wears off and im really tired then i take it again and get energy again. I'm still on prednisone and am hoping i will be able to successfully ween off of it... that will be the true test if the medication works. Good luck!
Eagle41 said:
I took it for multi organ serositis last year. It helped but not sure it was worth all the weight gain. I had been on high dose prednisone after a ten day hospital stay. I had gained about 10 pounds from 40mg prednisone a day but quickly put on 25 more once the Acthar began. I was in severe pain and very sick with pericarditis, peritonits, pleuritis with effusions etc.
I have heard many say it was a life saver for them, but for me it didn't seem to help more than high dose oral prednisone did. I can't blame all my weight gain on Acthar. I couldn't eat solid foods at the time so I had lots of smoothies and shakes so I was eating far too much sugar. Again, there are many that it helps but it just wasn't for me at that time.
Did you get insurance to cover it? Mine denied it, but the Dr was able to get it for me at no cost direct from the drug company. It is insanely expensive! Best of luck. I pray it helps you!
Insurance denied at first and I did the infusions. I was contacted again saying I have been approved and now have my first shipment. I do have a co-pay. Haven't started yet, as I have had stomach virus and unable to keep anything down.