Been on pred since 2015. Never was on high doses except one time for pulmonary issues, after the flu shot, when high prednisone doses 40,30,20,10 lasted several weeks before going on O2 24/7. I needed to start all over. I was down to 4.5mg before that.
Now I'm going nuts tapering from 7 to 6.75. I'm just miserable with hot flashes but no pain except if I overdo an exercise. I'm 82. It looks like I'll be tapering until I die and feel miserable all the way. Last week I did 5 days new dose but this week I went to old dose after 4 days because of exertion going to the doctor. I'm trying to get fitter, but it seems my body can't tolerate more exercise as I taper.
Can anyone relate?
Written by
Karenjaninaz
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Maybe you need a much slower taper? Took me several months to get from 4.5-3.5mg. I found tapering down from 7mg hard too. I've used Dorset Lady's 5 or 7 week tapers and go down a half mg at a time. Seems to be working but it's not easy - restless nights, sweating scalp, days feeling tired! Wishing you the best.
Maybe it is time to accept this may be your destination, the lowest effective dose? There is a great release when you shelve the "I must taper" pressure and just hang around in relative comfort,
I am stuck at 7mg, at 6mg after about 3 weeks the bicep pain starts and progressively worsens until I can't do anything with my arms - really rather inconvenient when you live alone! Can't even lift the kettle and I have a tiny one. And that is while being on Actemra!
Yes - but that dose of pred is not just for the control of pain. It also may be what you need for adrenal insufficiency management. When I get to 5mg I can feel the lack of adrenal participation after so long and those effects, while different from the tendinitis, make life hard and scary being on my own. So I need 6mg for that anyway.
I haven’t really parked at the lowered dose for long enough I think - especially at 7mg. A few months ago I had the cardiac ablation and I think healing is still going on.
I had a serious car accident april 2023. At that point I was tapering from 5.5 to 5 but said I was on 6 when I was admitted as it seemed easier. When they first started to get me walking after 6 weeks I couldn't stand for long before feeling faint so they upped my dose to 15 and then down to 10 by the time I was discharged. I was given instructions to reduce by .5 every month. I expected it to be a doddle and that I'd get down to at least 7 easily 😀 To start with it was but I found it got harder and I didn't get to 7 until March this year. When I was on 7 I was getting really tired and feeling faint at times if I moved suddenly, I stayed there until June. Now I'm tapering again and it took until quite recently to get to 6.75. Now I'm doing 6.5 for 2 days followed by 7 on the next (using DSNS ) and feeling tired with occasional dizzy spell. I'm staying at each stage until I feel ready to move on and resisting the urge to move on too quickly to get to 6.5. I do have a tendency to want to speed up once I reach the halfway spot! My long term goal now is to reach 5 and stay there for a bit. I don't worry anymore about whether I'll ever get of it or not. I don't have any recurrence of PMR symptoms so far so my main issue is adrenal insufficiency, I have fibromyalgia too so I really don't want loss of energy from anything else!
My friend is 82 and it's a tough age when health starts to fail. You have been on a long pred journey but please without worrying remember your no longer 50As you feel no pain t may be nothing to do with Pred flares from PMR and just age catching up with you as it does with all of us.
Th e only reason I say this and I did think hard before saying it , is that worrying about pred doses is just causing you stress and anxiety.
We all get older and suffer many age related illnesses but being positive and not letting age win keeps us going stress-free and happier
I'll be 84 shortly. After recent happenings, I know I will be on pred for the duration. I truly don't mind; I don't want to be preoccupied and focused and stressed about reducing to zero...for what? for who? I'm on sixty right now, after zero, and want to find that 'lowest effective dose' for me. I'm thrilled for anyone who can achieve that and have a good quality of life, truly happy. It isn't going to be my ticket and that is OK for me. We all have to know what our own bodies need. Because your body needs more does not mean it is a personal failure. It only makes sense that if we have a disease....some of us will be more resistant to weaning off completely. Be kind to yourself💞
I have long ago discarded the idea of “zero pred”; I would hope to have a lower effective dose with less side effects. But if that’s impossible I must accept it.
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Dead slow, nearly stop taper
SWEATING PMR/GCA AND TAPERING
To taper tonight or not to taper.
Possible root canal
Down to 1 mg and flare up
