I have blood tests and a rheumatologist appointment every two months. I was diagnosed in August 2020. I had a biopsy which was negative, and put onto 15mg for 3 weeks, then reduced to 10mg for a further 4 weeks, then down to 7.5mg where I've remained since October 2020. Apart from minor aches and pains associated with getting older (I'm 81) I feel fine, I'm active and enjoying life. My rheumatologist is quite mercurial. Two years ago he said I should reduce from 7mg to 5mg with immediate effect and then forgot all about it in subsequent meetings. So I carried on with 7.5mg and he seemed happy with this and renewed my prescription accordingly. He said there were very few side effects on this dosage and it would stop me from having flares. So far so good. At yesterday's appointment I let slip that I'd been seeing him for 3 years (actually it's 4 years). He seemed quite alarmed and said he is following directives about getting people off steroids after 3 years as their PMR would be gone (how often have I heard this!). He has suggested that I drop to 5mg immediately and have another blood test in 2 months. If my inflammation markers have risen then I can go back to 7.5mg. If they haven't risen then I can stop taking the 5mg as my PMR will be gone. I'm not sure what to make of this, and he's really not a person who can listen to reason. I can't change to another rheumatologist as he is the only one in Paphos. What to do? I know all the pitfalls about reducing too rapidly so I'm looking for some positive input (if there's any given the circumstances) from this helpful and informative group. By the way, I have accumulated a hefty stockpile of prednisolone over the 4 years!! Thanks for reading.....
Rheumatologist wants me to reduce from 7.5mg to 5... - PMRGCAuk
Rheumatologist wants me to reduce from 7.5mg to 5mg with immediate effect
Need reminding, but can you only get 5mg Pred in Cyprus, and he’s expecting you to cut that in half ?
Couple of options - obviously not an immediate drop down - but using one of the slow tapers - and extending it significantly you could try 7.5mg down to 5mg - over the 2 months he suggested . Or if possible can you cut your 5mgs into quarters… [giving 4 x 1.25mg] doesn't have to be that precise and try 7.5mg to 6.25mg and then 6.25mg to 5mg.
That way you can say you have tried… and you never know it might be successful.
Thanks for replying. Yes, I can cut the tablet in half as we can only get 5mg tablets in Cyprus. Today I went down to 6.25mg which I will try for a month and if I have no problems then I could try to cut down to 5mg for the following month. Fingers crossed.
I'd go slower than that!!! Having to reduce in larger denominations is less of a problem if you take 3 months instead of one to make the change.
I may well do that, thanks for the info. Sounds much more sensible.
Agree with PMRpro - you have been at current level for a long time.. and reducing isn’t going to be easy… [rheumy must realise that!] so slowly does it.. and at least you will have tried.. and can report how you have got on.
I wish you well on your taper...I'm glad you are slowing it. Some very smart folks on here with life altering suggestions~! What a group. Through my journey with GCA, a few times I've paid a heavy price for too much of a taper. The tortoise wins this race. It sounds like you have a strong mind and will do what is best for youl...my best💞
As DL has explained - we used to use one of the slowed tapers for UK patients on the enteric coated pred which only came in 5 and 2.5mg tablets and can't be cut. It worked then so should be OK for you too.
As for PMR "should be gone by now" - wonder what he'd say about me with symptoms after 20 years?
My mother also had PMR for over 15 years and I'm concerned that I might follow in her footsteps, but I will give it a go. However, it's quite likely that on my next appointment he will have completely forgotten our conversation. About 18 months ago he told me to reduce to 5mg but never followed it up on subsequent appointments. .....
If I were you I'd hope for that but start to taper very very slowly anyway - puts you ahead of the game and you might get quite a bit lower. Doesn't matter if you don't - and you have an answer for him too.
Just a reminder from me to check the dates on your medication packs incase some have expired. Your rheumy’s crystal ball appears to have clouded over. “Your PMR has gone “! I was told mine had gone when I was on around 2mg Pred. I objected and did a slow taper until I reached zero pred many, many months later.
Yes, thanks. I have all of them in date order.
👍
OMG! Your PMR will be gone!
Pleased you have a stockpile. Good luck.
Nothing I can add to the suggestions already made. Just to wish you well and, I guess, hope that your Rheumy's fluctuating memory continues.
So do I! Thank you....
Glad that you have a stockpile. Maybe you can use it to do a slow taper instead of his/her fast approach. Surely you can't just stop at 5mg!
He doesn't know it yet, but I don't intend to stop abruptly at 5mg, unless of course I have no side effects from this taper which I doubt very much. I think my adrenals have been trying to kick in whilst I've been on 7.5mg. I have two months before see him again and a lot can happen during that time. Thanks for your response....
mine told me to go from 5mg to 0…in six weeks! Absolutely definite with it, pacing the floor in anger, & said if I got sick again (I had adrenal insufficiency problems last time) I had to battle through it & not to give in & increase under any circumstances! I changed Hospital & queued for 18 months so far. I don’t think a specialist is needed for PMR, unless he is the only one who can prescribe for you? My GP & I work together, & if I get problems I can come here for help!
Here in Cyprus the GP's and specialists work independently. The GP's refer the patient, and the specialist deals with patient. So, only my rheumatologist can prescribe my medication. If I need, say, a test to determine my Vit D levels my GP can't order one, only the rheumy. Most of the time it works OK though.
Guess it’s just something you get used to, really. Frustrating in this situation, though, as the GP cannot prescribe pred for you!
He’s obviously ignored the fact that after so long on 7.5mg your adrenals may not be working and dropping so rapidly could cause you to be seriously ill with adrenal failure
Thanks, yes that's a concern too. I'll stick on 6.25mg for as long as I feel OK but if not I'll go back up to 7.5mg or even higher if I have to.
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