Treatment
Posted , 3 users are following.
I was recently on Acthar Gel. Yesterday dr told me he was switching me to Methotrexate AND either Humira or Inflixamib....depending on my insurance. He is switching me because I showed 2 new areas of hemorrahage in my eye. Does anyone else take these two and how are your side effects? This is newly confirmed diagnosis. I was only on the acthar for about 3 weeks. They diagnosed me in February 2017 with neurosarcoidosis. I have gone mostly blind in one eye and I am losing my hearing, I show inflammation in brain. But am feeling no effects. I have adapted to the blindness etc. can anyone give me info?
0 likes, 5 replies
david96615 Magghe
Posted
I was then given Infliximab infusions which removed the inflimation very quickly. I am still taking the Mycophenolate, Plaquinill, and Prednisone. After having Sarcoidosis in my heart, Lungs, Lymph Nodes, and Pherial Nerves it does appear to have settled down, Side effects from the Infliximab was not even noticeable I had no issue.
Hope it works out well for you
Magghe david96615
Posted
Thank you. the Acthar gel was just like Prednisone, which I cannot tolerate the Side effects of, but the Acthar had same type but much less intensity...it helped in a few areas of Sarc but not my eyes. I started the Methotrexate last saturday and am still waiting on the Humira...My doctor says the Humira is same class as the infliximab but its a shot vs the infusion and more "humanized" so it is tolerated better. You saying that you barely noticed the infliximab Side effects is SUPER reassuring...that tells me I have a good shot and sailing through Humira side effects. Thank you so much for that! it means a lot to ease things a little! and the thought that it helped you fast is so encoraging too!
david96615 Magghe
Posted
Hi Maggie, how are you going with everything, I did mean to mention that the reason I had to go off the Methotrexate was that I got Pneumonia and you can't take an antibiotic with it. I have half a tablet daily of Bactrum which seem to keep everything in check. Since post last time the cough seem to be returning which the Doc is concerned with, and even though the PET/Scan showed my Sarc settled my CD4 and Lymphocyte blood counts is still very low. Take Care
Magghe
Posted
Thank you! I have it in the braid and eye right now. I have gone mostly blind in my left eye as I said, the lungs have cleared...I didn't even have the Diagnosis when that was active...but that is how they proved the diagnosis. Acthar Gel is very similar to prednisone with less side effects....I have horrible side effects on Prednisone. So that isn't even an option anymore for me
I hope I dont have too bad of side effect with the methotrexate and inflixamab.
Thesufferer Magghe
Posted
My heart goes out to you Magghe and everyone who's suffering from this. I don't know what else to say because I have nothing else to say but I just wanted to express my feelings. I really hope that you'll get better and you'll find the medication that will work for you.