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John had very bad fatigue too and some of the other problems you are experiencing. I would suggest getting your hormones checked, especially testosterone. John's testosterone was very low so his doctor started him on a bio-identical cream at a low dose and increased it once or twice. He didn't give him a dosage that would bring him up to the level of 25 yr old but more to a level to match his age. They should check your thyroid also.
He also started supplements to support his adrenal glands and mitochondrial. Adrenal glands need vitamin C and vitamin B5. There are nutrients that helped his mitochondrial....the body's power generators. Also consider upping your salt intake with a good sea salt and drinking fluids with electrolytes for the hypotension.
Prednisone will cause your adrenals to slow or shut down. That is why they don't stop it cold turkey. Your body needs time to restart it again. He had a doctor suggest replacing his cortisol with a natural cortisol much like those who have addison disease but John did not want to go that route.
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Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of July 2021 HGB 12.0, WBC 4.70/ANC 3.85, Plts 110K.
Last edited by Marlene : Thu Jul 14, 2016 at 10:38 AM.
Reason: Grammar fix
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