Rhumy
Posted , 4 users are following.
hello all I keep popping up last time I was on here I think it was registered itching all over that goes away for a while then comes back but the reason I'm here again is my rheumatologist wants me off pred so much so that she notified my doc she wanted me off pred that the doc wouldn't give me my dose I wanted I was reducing pred any way but doing it really slow i.e. I got down to 6 mg but I wanted to stay at 6 for a bit longer as if I reduce I need to stay at that does for a while think it about 2 month all she ever does is talk about reducing well the doc won't give me 5 mg now is there any thing I can do to get them to leave me at 5 mg and reduce at my own free will as I'm afraid they stop it then it me who aches all over thank you
0 likes, 14 replies
nick67069 paula21528
Edited
If your symptoms are under control, make an agreement that you will try to reduce dose from 6 down in 0.5 mg steps using slow method (DSNS), BUT if symptoms return then they would let you stay at dose that manages your symptoms properly and not insist in reducing any further. In that way you both win.
In a long run, change your rheumi if you can. She does not now how to properly treat PMR.
paula21528 nick67069
Posted
hi nick iv got down to 5 mg now but not even going to try go below that for a while i have just come out of hospital for pneumonia while i was in there they gave me a scan of my chest and found out the pain iv been having is from a fracture of a rib at the back well the rhummi going to love that she will blame steriod for making my bones brittle i go for a bone densisity scan on wednesday which could show osteoperosis then it will be because im on steriod she really does my head in every thing is because of steriods i dont know why i was given them in the first place lol i will keep you informed as to what happens next
Anhaga paula21528
Posted
Can your rheumatologist explain why she is so desperate to have you discontinue a medication which is working for you? You have been tapering, what more does she want? If you taper too quickly you know you will flare and then end up having to take a larger dose again. Surely she must understand that? I agree with NIck. If you can, find someone who knows what they are doing. Is your family doctor allowed to treat you without the sayso of a rheumatologist?
paula21528 Anhaga
Posted
Hi Anhaga i havent got a clue all younget off her is steriod id a nasty drug it causes brittle bone which i have already i really dont know anyway this time i go see her my sister is coming with me for a bit of moral support i have not seen her since i ladt wrote and said she wouldnt give me any steriod ill have to ask her why she want mevoff them so quick and to ask why steriod are so bad i shall keep you informed thank you,
paula21528
Edited
hi anhaga i have got down to 5 mg now but will not be attempting to go any lower i have just come out of hospital with pnumonia whilst i was there i got a scan found out i had a fracture of a rib at the back i was getting a lot of pain in that area soshe blame steriods for it sayigsteriods makeyou have osteporosis im havingba bone densisty scan on wednesday then i bo see her on the 27 july i told her last time i was trying to comevdown but slow obviously not fast enough as at that time i refused to go any lower so she had got in touch with my doc and told her nottogive me any more i went in to see them got it back and lowering by 1/2 mg a month but because i wont go any lower this month till i get on top of everything she probably get on to doc again ill let you know as to what she says
Anhaga paula21528
Posted
Sorry to take so long to reply, I've been a bit distracted lately and forgot to check in to Patient. Please have a look at something I wrote about osteoporosis a few years ago. You can find it by googling healthunlocked my osteoporosis journey. My avatar on that site is HeronNS. If you can't find it let me know and I'll private message the link. Basically it's an account of how I helped improve my bone density without using osteoporosis drugs so you may find some useful tips there.
paula21528 Anhaga
Posted
HI Anhaga i cant seem to find about your health unlocked it just wont comevthrew
EileenH Anhaga
Edited
Have you tried posting it? They do have some "allowed" sites
EileenH paula21528
Edited
https://healthunlocked.com/pmrgcauk/posts/137578304/my-osteoporosis-journey
Anhaga paula21528
Posted
Eileen has posted it for me. 😃
Healthunlocked is all one word. It is another health forum.
EileenH Anhaga
Edited
And I never thought I'd say it but rather easier to use than this one at present!!!!!
Anhaga EileenH
Posted
I spent relatively little time on Healthunlocked before the changes here. Now I just poke my head in the door so to speak to see if anything up here, and then go away again.
EileenH Anhaga
Posted
I just don't think about it for days at a time!
EileenH paula21528
Posted
Find another doctor - you must NOT reduce quickly at this stage as now your adrenal function must return and that takes time. If you were to reduce quickly now you could end up in hospital again with an adrenal crisis. Very unpleasant and potentially very very serious.
My husband has just had a fractured vertebra - never taken steroids long term, just for a time during chemotherapy 26 years ago. And someone on the HU forum also has one - only been on pred a few months.