I have the vial in my fridge now but cannot start it due to being on sooooo many steroids at the hospital. I have to wait till they are out of my system. I've tried benlysta for about 3 or so years, prednisone and plaquenil forever, with pretty damn lousy results. My doctor has always been very realistic with me and never makes promises. She did on the acthar. She said her own father in law and other patients saw dramatic results for about 8 months (her father in law was convinced he was cured) then they all went down hill and were placed on alternative treatments for a few months then back on acthar for great results. Being that she put so much emphasis on this drug I'm hopeful (to me 8 months of great is worth a few of hell if I can hold down a job and have a little more life). I will definitely be putting up how I'm doing on it once I start.

I also read up on it and discussed it with my Nephron Doctor. He is using it mainly to thin out the membranes that are getting too thick around my kidney. Helping with the lupus as a whole is secondary use. The Plaquenil from my rheumatologist is for the lupus. I'm learning and researching as I go. Accepting all advise and information that's offered.

I unfortunately have been giving myself some form of injection for migraines, b12, or lupus since I was 10 so I'm a pro at this point. None of the reviews says it hurts, the only issue may be it's consistency. My case management nurse did stress giving each shot in a new location and rotating them out. She said chubby spots are the best. I did look up the pros and cons to it and for me it's the same as benlysta. My doctor also loves labwork so she monitors me monthly. I'll be getting additional labwork to monitor my kidneys for the year I'm on the acthar. I've learned that everything has horrid side effects and you have to way it all out.

You should read the information on this drug, many conditions of lupus are listed as reasons not to take it, Adrenal Insufficiency is one as is kidney disease, just do your research first.

@A MyLupusTeam Member Thank you so much. I have it also I'll let you know how it goes. My doctor plan for me to take it for one year. Then he'll let me go without for a while. I was so scared about giving myself a shot. But my Goddaughther is an RN so she plan to come give it to me. So I'm okay now. I'm glad that you hear it works. Thank you again.

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