Asking for a friend
Posted , 9 users are following.
seriously. i have a friend who has had pmr for 15 years--it runs in her family, she says. her father, undiagnosed, was wheelchair bound; her sister has it also. "b" does not use forums and is not very internet savvy, although she is (was) a nurse so she is fairly knowledgeable about health issues.
b is currently taking 1/2 mg pred every 4 days. she says her muscles and range of motion have greatly improved but she just feels unwell all over, unhealthy, she says. i tried to talk her into going back up to say 1/2 mg pred every other day and staying there for a year to allow her adrenals to catch up, she wouldnt hear of it. i talked to her about the possibility of adrenal catchup, adrenal insuffientcy, sluggish adrenals, all which she is aware of. i told her 1/2 mg every other day is a minimal amount, that her body might just need it to function.
can you all please tell me what tapering plan b should be on? what do you think might work best to get her back on track? thank you.
0 likes, 7 replies
Anhaga Twopies
Posted
Sadly, it sounds like she's not open to suggestions. When I started on pred my doctor actually told me that she had patients who kept a supply of 1 mg tablets on hand even after they had "officially" tapered off just in case they needed the occasional dose, which I have taken to mean that the residual effects of PMR and pred can linger for quite a while.
Twopies Anhaga
Posted
and just take it as needed? only one once in awhile? ill share that with her.
im thinking she needs 1/2 for awhile, im gonna take my club and smack her.
Silver49 Twopies
Posted
I have a friend whom I shall be seeing tomorrow. She had PMR for 15 years and stayed on 1/2mg for a long time. I think it may have been a year and she eventually realised she no longer needed it. She had a dexascan at one stage but I can't remember when that was. She has a professional background which meant that she knew about the physiology etc of the body so was not without knowledge. I think the 1/2 mg makes such a difference that it's a shame your friend cannot take it daily until the need is no longer.
Twopies Silver49
Posted
im gonna share these replies with her so thanks for helping!
EileenH Twopies
Posted
It sounds as if she has followed her taper plan and isn't open to any other options. It also sounds as if she thinks the course of pred she has taken has cured her and doesn't understand the finer points of recovery.
Twopies EileenH
Posted
yep. thats what im trying to explain to her in my own feeble way. and you know how feeble that is.
EileenH Twopies
Posted
Not feeble at all. You can lead a horse to water - but you can't make him drink ...
It may well sink in eventually - but I don't hold much hope.