I"m feeling very fortunate because I have gone from 40 mg pred to 12.5 mg without and major issues....just the old tired period after dropping. BUT...my rheumy has had me decrease by 2.5 per month. Last month I told him I would rather do 1mg but he good naturedly got me to go along with him.
I see him next week and now feel I want to slow to 1mg per month. What are your thoughts? I feel if I insist he won't want the responsibility of messing up~!!❤️
I think 1 a month is good. I was doing 1 every 5 weeks. Now down to 4. No issues.
The rule of thumb is no more than 10% drop at any one time, so you have now got to that point.
Is this with or without Actemra?
With Actemra weekly. Now what do you think?❤️
I'd do the 2.5mg to 10, POSSIBLY to 7.5mg - the Actemra allows that. Then you are in adrenal territory - and slower is better then to let the adrenals catch up.
Tell him that Professor Bhaskhar Dasgupta and world leader in research on PMR & GCA keeps patients on 2.3mg for at least a year (maybe 2) PMRpro will know exactly how many years. I can't find it.
Don't think he said - just longer term. Which means anything ...
Morning Grammy, 1mg a month sounds good to me. I've been doing 1mg every 5 weeks with an occasional extra week if neccessary and now looking at .5 as I get get below 5mg.
After endless false starts in reducing and some considerable years down the line, I have had some success at only going down by 1/2 mg after 10mg. Stress related flares suggest pmr is still around - I am just a bit better at managing it (I hope!).. Currently crawling to 4 1/2. I am at last a believer that too fast is short sighted. Good luck
I agree, crawling is much better than falling on your face~!! Thanks💖
Received wisdom informs us not to reduce by more than 10%. It’s really important at lower doses.
I went from 35 to 7.5 pred while on Actemra. I went a little slower than doctor wanted. He wanted me to reduce 5 mg every week but i went 2 or 3 a week. Now he wants me to reduce 2.5 every 2 weeks. I’m not sure yet what I’m going to do
I think you have to be comfortable with the reduction. Last month when he said 2.5 and I was at 15, I bucked him a bit but gave in. At a dosage of 12.5, I have had a few headaches which I had not been having and some soreness in my left jaw, not pain, but I'm just not comfortable pushing the envelope with another 2.5 cut. I can't imagine a cut like that every few weeks. When I reduce I seem to go through a period of fatigue and not feeling my best, then the next 3 weeks are ok. I've never been in a rush to zero person and I'm definitely not a rush to flare person. I've got too many irons in the fire to push a button that doesn't need to be fooled with. Pred is great...pred is bad and we need to reduce but we also need to have a good quality of life, the best we can and if it means taking some pred for the rest of my days, I'm OK with that. Wow...the old philosopher strikes again~!!!I was also put on Actemra back in 2019 and had to get off for awhile last year when I was in the hospital with cellulitis. I've been back on it now for at least 5 months, I would guess.
We all have a lot to juggle and I think we do pretty darn good~! Especially with the forum to guide and support us.❤️
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