Due to some terrible flares in late summer, I started on Acthar Gel injections (1 IM twice a week) about 3 1/2 weeks ago. by my rheumatologist. I give them to myself without a problem. So remember this---if I can (as needle phobic as I am) do this you can too, if it is ever required.
I went through a lengthy process for assistance approval from the Chronic Disease Fund (good to know about CDF if your funds are limited). BUT, on days I take the shot and one half to a day afterwards I feel terrible. So, I'm better for a day AFTER the immediate effects of the shot are worn off and then the cycle starts again. Reminds me of my sister taking all the chemo for ovarian cancer for ten years. It was torturous to watch her struggle with all the new drugs and side effects until she passed in 2010.
I know Acthar injections have less effect on the pituitary/adrenals and stomach, which is good. But, just like with Prednisone, I am ravenously hungry, my hair is falling out (yes, already), I am bruising, my mood is "edgy" (i.e. meaner than a snake), have a nasty rash on my face, and I have already picked up a dry cough, and my brain is so fuzzy---I am doing things like mixing up appointment dates when they are written down on TWO calendars. I can't take a flu shot because last year I had a reaction that my primary care doctor (whose office gave the shot) said looked like Guillain-Barre Syndrome. When I got out of bed, my knees buckled and I feel to the floor---the day after the shot.
Question---(one that the drug manufacturer pharmacist assigned to me could not answer nor my doctor's office). Is there a comparison of Acthar Injections to Prednisone pills as far as dosage? In other words: Is 1ML of Acthar equivalent to let's say 40 mg of Prednisome? Maybe they are drugs which cannot be compared.
After all this babbling I have a point here! I am ready to give up on all the "new" treatments which make me feel worse=don't work. Benlysta is one I tried when it first came out several years ago. After three months of infusions, I was feeling worse so my rheumatologist took me off. Now I learn that research has shown it takes 6-12 months of Benlysta infusions to see if it really does work!
I'm 61 and although I wasn't "formally" diagnosed until 2006 (54), I know I had Lupus from my late 30's at least....repeated infections, surgeries all over my body, thyroid disease which went undiagnosed for many years, exhaustion that required me to get up 3 hours early to drink 2 pots of coffee to be able to get dressed and go to my job, plus my maternal aunt died of Lupus kidney complication in her 50's. Even as I child I remember being sick constantly. I finally just collapsed after diagnosis....applied for disability and was turned down then approved.
I know it's all about how much energy you have to fight this lupus affliction, but my reserve is gone, gone, gone. Formally a social person, since I had to quit work about five years ago, I have become more solitary as I have come to understand that others DON'T understand. I have a sweet, wonderful boyfriend who is quiet and likes a simple routine (we play group trivia at restaurants, go to the nearby dog park, the used book store to browse, watch movies and special programming at home, go to concerts when we can afford it, etc.) I have to take prescription Adderall to be able to do anything special. He is what keeps me going.
Honestly, my quality of life has sucked for more years than not. So now I am thinking why bother trying new things every few years which put me "through the ringer." Does anyone else have comments about this feeling? Any comments at all? I'm supposed to be a moderator but it is now ME who needs help! LupanCatwoman