Has anyone been on this drug and what was your experience?
Ann, I always look for your posts as they never cease to inform, amaze and delight me. Thank you. Plus, we are in the same age range. Yes, I am starting on Acthar injections next week. It's on "off" use med for lupus. It's been debated, but the drug injected may cause fewer side effects than prednisone and it by-passes the adrenal glands. Who knows...it's all a crap-shoot. I tried Benlysta when it first came out (about three years ago) without success....now I have learned that recent research shows it takes six months to a year to see any results. I tried Benylsta for three months. Lupancatwoman Gail.
I am currently using Acthar. I started out twice a week. Now once a week and I am alternating 20mg and 17.5mg prednisone every other day and then down to 17.5 everyday etc. I was in hospital for 10 days with multi organ serositis. I had pericarditis ,pleurisy with pleural effusion and liver capsule inflammation/peritonitis. It was the worse pain I have known in my life. Before Acthar whenever I would go down even 2 mg of prednisone the severe pain would come back. I was on 40mg when I got out of hospital. It took a long time but my dr was able to arrange my getting the medication for free. So far it is working for me. At least I only take it once a week. Still in pain but pain is no longer severe. I have noticed more abdominal swelling and chipmunk cheeks. But I know that will go down as I continue the taper.
so are you using it for pain? or to slow lupus down...or just coming of steroids? I doubt i would qualify as i cannot take anti inflammatories due to stomach/intestinal problems....and have other autoimmune diseases going on which it mentioned not to use with...but I am looking for alternative pain treatments.
So appreciate if someone does use it for pain relief or just flares. Flares are bad enough but pain i have..well i want to get off narcotic drugs. appreciate any input thanks
Siskiyousis---I will be using it for pain and to slow down the flares... I hope you have some good responses to your email! We Lupans all struggle for relief.... All the best, Lupancatwoman
My husband has MS and he has taken Acthar gel injections. He did well on it. However the next month they gave him solumederol again. He was taking Gelenya the "new MS Pill" its not al that! When he came off of it he had strokes! his cellebellun was shot his neuro said. They Rx ACTHAR it did help him. However it didn't stop his exbaserbation. They had to prescribe solumederol for 3 months straight. He is doing much better now. He's now on copaxone injections and doing very well
I am using the Acthar to help me get off prednisone. But since it makes your body create its own cortisol it also helps with the pain. I was a mess with a rather strange case. My rheumie said he had never seen a lupus patient with virtually all organs affected by serositis. Before the Acthar I could not get lower than 35mg without severe chest pain. I am still not exactly sure how my Dr got it but I am glad he did. Since part of the problem with prednisone is that it shuts your body’s natural cortisol down, the Acthar makes a lot of sense for me. So as I am going down on prednisone my body is starting to make its own cortisol. It is still hard going down. Still in a lot of pain. But at least I am going down.
I would think that Acthar would be good for someone who is not able to take anti inflammatories (NSAIDS). It is basically ACTH that stimulates your body’s natural production of cortisol. It seems to be working for me and hope it will continue to.