@kjoed53 and all... Yes, absolutely true, especially with auto-immune diseases. They have stumped the medical field for decades and only now appear to have more definitive diagnostic symptoms and better treatments.
My research and rheumatologist at Mayo treat PMR if you have both shoulders and both hips causing you extreme pain... I was hit suddenly with severe pain in both sides of only the hips and shoulders, to the point I couldn't turn over in bed at all, had difficulty getting out of bed or sitting up. It was severe. Immobilizing. Nothing touched it until I took Prednisone, I think I began at 20 mg at that point. perhaps 30mg. Don't remember. After a 2nd bout of Covid with Covid pneumonia and IV Remvisidere. Then. shortly, I was hit with GCA and put on Methotrexate, which worked immediately to calm the GCA symptoms. PMR symptoms responded well to Prednisone and tapered to 10mg daily for over a year.
Then, had the Oxympic reaction that sent my body into orbit in pain, weakness, etc. damaging my muscles and leading me to the diabetic even with coma level glucose levels.
That led to weeks of hospital, hospital rehab, leg/hip paralysis and 20mg prednisone to relieve the paralysis some. It took weeks of work with PT in hospital rehab to be able to walk again. I was using a wheelchair in the NH rehab for several weeks. What a journey that was... very long, very challenging, very debilitating. I attribute this all to Oxympic damage to my muscles and a reaction from my auto-immune system. I don't think these issues will ever be resolved. I will never have the muscle strength I need to function at the pre - Oxympic level
which was still limited mobility.
Tapering Prednisone is vital for me as I have multiple issues that Prednisone exacerbates... Vasculitis, aortic aneurysm and other heart issues, brain issues caused by this miracle drug, etc. So, I will and am tapering, but it must be extremely slow and methodical, watching carefully for reactions and responding asap. Several mornings I was completely paralyzed,whole body except my eyes and mouth... Robaxin 750 relaxes the muscles and allows them to begin to respond to my instructions and movement begins slowly, with tremors and weakness for hours to days following.
As the Prednisone is decreased below 15, I'm now at 14mg, these symptoms begin returning with weakness, tremors, pain the first it appear. I'm 79 and live alone. This is not going to continue. So, I will taper slowly, but it appears at this point 14 mg is the bottom for now. I'm holding there thankful to be down at least 6 mg since last May! Brain fog is less, movement is still ok, weakness is still worse and all kinds of pain is hitting me, but it's tolerable now using Tylenol, Kenalog cream, Xanax...
No, there is not a substitute for Prednisone with PMR, Sarcoid, my paralysis and other illnesses... It is a miracle drug and a horrid debilitating drug. We must learn how to deal with it as best we can. I don't expect to ever taper with no increased pain. I accept the pain up to a point in order to get down as low as functionally works.
Blessings to you all with this crazy journey... Elizabeth
@ess77
Do not be so quick to dismiss your muscle recovery. Medicine has advanced in leaps and bounds during our lifetime and it's sometimes akin to the proverbial snowball rolling downhill. I also believe in the power of the body and mind to heal itself if given enough time. I don't know much about it, but is creatine something to discuss with your doctor? Some people swear by it. I've always enjoyed the challenge of proving someone wrong who doubts my ability to accomplish something. Prove your doctors wrong if they are telling you that you can't return to your former self. From what you wrote, you strike me as a fighter, so get to it...lol