@lemmy2022 I’m so sorry that I didn’t see you posting sooner. You’ve had myositis for about 10 years and are taking prednisone. Are you taking any other medications for the myositis? It seems like I’m going to ask you lots of questions, but id like to get to know you and your situation better. Is that okay? What types of physicians are monitoring your disease? An ophthalmologist, a rheumatologist, an endocrinologist and a dermatologist? Ive been on prednisone for about 6 years. I started at 60 mg and have slowly come down to 5 mg. Ive been followed closely because i developed cataracts and osteoporosis from the prednisone.
I would love to see you get some proper care..Can you ask your doctor for some appropriate referrals?

@lemmy2022 Lemmy, I feel sad for you. I have some of the same stuff, and at 81 years, I am just now learning what I have. I have seen over 100 mds, DOs, etc, and am only now learning. But first, a couple words of caution. 1. Do not trust anyone with anything you can not yourself verify. Medicare, clinics, whatever. I trusted a clinic on the Oregon coast and got caught in a web of "bait and switch", the oldest fraud in the book. Medicare told me Medicare would cover the cost of the work, They gave me the name of the clinic to use, so I did. Then the clinic subbed an irrelevant process without telling me or Medicare or AARP, Medicare will now not cover it, Now the clinic is talking about suing me because Medicare says they will not cover any of it. Sounds like politics.
2. Always be aware you may have a bucketfull of disorders and diseases. I have about several thousand genes marked as pathogenic, malignant, unknown significance, etc. The Gelsolin/LGMDc4-2m I have puts a protein-cancer fibril in every cell in your body to mess with the Actin Web. Then other pathogenic genes come along and invade at the weak spots. I have had 53 cancer-related surgeries and processes, many of which could have been avoided if I had known they would do no permanent good.
3. For most purposes, over-the-counter meds are at least as good as prescription. I spend a lot of money on acetaminophen, aspirin, vitamins, Novolin R, guaifenesin, etc. Of course, I also burn a lot on levothyroxin, Methotrexate, etc.
4. I also keep good records. I use the Abbott LibreView 14day Glucose monitor 4x every day, plus O2, Blood pressure, pulse, weight scales, etc, many times every day. And I track most of it in my book.
5. Anyway, just be careful, and protect yourself from scam artists.
oldkarl