Thanks ginny, lynnwood, I feel less afraid. I'm already hairy without the steroids so I'm afraid I'll be a wooly bear on them all the time. I'm hoping that I can take 5 mg every other day for maintenance because of my liver and pills (I'm allergic to birth control pills, something in them and don't want to get allergic to the pred or cort pills) and then more when things get bad. I'm afraid of the bone density thing due to my sunlight allergy and vitiligo, I never go in the sun and have none through the windows, wooden blinds and curtains and so I know you need sunlight for vitamin d to process calcium. I've craving milk alot since this sunlight allergy. I did have a real problem with the one shot they gave me for the ACTH stim test and I couldn't eat enough and bad cravings. I did feel much better though and was more active and went outside for a long time, but then had real problems afterward. I hope the steroids make the sun sensitivity better. Unfortunately that goes with liver disease as well as ai.
I do have adrenal insufficiency they are just trying to figure out if it is my pituitary or adrenals. Pituitary and hypothalmic deficiency is part of non-alcoholic steatohepatitis, as is hypo/hyperglycemia.
Ginny, I just take plaquinil. I've asked about cellcept, but they won't give it to me. I was using a ton of protopic ointment for my vitiligo for a few months and its active ingredient is the same as rapamune, a strong anti rejection organ transplant drug like the other drugs they give for lupus, and it made me feel much better even getting it through my skin. They told me I was using too much, but it made me feel alot better, though too much can make you sick. I wish they would consider this, but I think they think that I may get alot better once the endocrine is treated, so maybe that will be the case.
Lynnwood, the bad thing about that bone density is that I have a plate and four screws in my neck, which is collapsing and full of arthritis and is compressing my spinal cord by 50% and the next surgery would be probably more debilitating so they tell me to wait. And I have scoliosis, disk problems and stenosis all through. My saving grace is my thick bones. I can't imagine what would happen with my tight muscles that spasm alot and my corkscrew knobby spine if the bones weren't strong. That does scare me. But then, the arthritis and scoliosis can heal and go away or get alot better if the source of it, probably the endocrine contributing, is treated.
I'm with you on the cravings, too. I don't think that she is going to let my rheumie do a whole lot for flares, I'm afraid. She seemed upset that with my history I was given any at all, but I usually only get them if I can't breath or have other problems. I tried to explain that the polyendo preceded all my other problems, including bad ai, and started 15 years ago.
Well, thanks for making me feel better. My primary care really scared me and I know she is right in some cases, but you guys seem to be doing ok. And the pain relief and energy would be a big plus. I was considering holding off on treating the problem if she suggested it because I was afraid I would feel worse and be in worse shape, but I feel better about doing it. If I have addisons, it would be just starting and I'd have time, I know not treating it is a serious decision, but with all the other problems I have, I just figured it probably wouldn't be of much benefit from a life extending thing. You have made me feel that it could improve my quality of life rather than messing it up. Thanks so much, it means a lot to me.
--Doctors are men who prescribe medicines of which they know little, to cure diseases of which they know less in human beings of whom they know nothing.--Voltaire (1694-1778)
Ills--Sjogrens-Lupus-like AI Disease, Hashis, Vitiligo, spinal stenosis/fusion with plate, salivary/lymphectomies, Diabetes, NAFLD, COPD, RLS, neuropathy, trigonitis, hystero, diffuse brain atrophy
Meds--Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, Estradiol patch, Prosed, Klonopin, Soma, Ultram, Vicodin, Restasis, Albuterol,steroid injections, Protopic & Triamcinolone Acetonide ointments