I am new to the site . I wished I had discovered it sooner- I have found more helpful info here than from any GP etc.
I am 12months into PMR // steroid treatment now down to 6mgs .( Still struggling with fatigue and joint pains- may have to go back up to 7mg- awaiting consultant telephone appointment ).
Just beginning to realise that this( PMR) may continue for months/years and I will have to accept this! All very frustrating as I am keen on sport ( all gone out of window for now).
Good words of encouragement from all your previous posts - so glad I have found you all.. Thank you
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moorfield
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Welcome moorfield, I found it a big relief when I found the forum a few months after I was diagnosed. At least you are armed with information now despite it potentially being a but longer than you thought. Most GPs actually don't seem to know too much.
It sounds like you have gone past your sweet spot where you are on the lowest dose to control the symptoms. There are a lot if old posts, new posts etc that you seem to have found. So any questions about PMR and GCA (it's worthwhile knowing the symptoms just in case)...just ask.🌻
I found this site almost a year ago. It has great information ! Yesterday I started on 3mg of prednisone after 2 months on 3.5mg. It all seems to be trial and error, as all our bodies are different, so I am ready to go back up, if need be. At 10mg. I started to go down, very slowly, by one half mg. Hope you do well.
Thank-you and very wise words. I have been doing very slow 2 monthly tapering but it seems to be a lifetime but I agree I think I need to go back to 7//7.5mg as I felt better on that.
That's a great slogan ( I think I have been hoping to reduce a bit quicker but I realise now that isn't going to happen) - so slow and steady it is. Thank-you
You have reduced very quickly. A lot of rheumies/doctors keep their patients on 10mg for a year.
If you are one of the "lucky" ones you are still looking at being on pred for 2-3 years (some of the "unlucky" ones are on it 6-10+ years. Don't risk trying to get off pred too soon, take it easy - go back to the pred that was really dealing with your symptoms.
Have you ever been at a dose where you’ve though “I feel pretty good” almost normal. I experienced that at around 10 mgs. I got more done and my life felt more normal, though scaled back. I hit trouble when I reached 7 mgs and got stuck there for a year. It can be very snakes and ladders with stress and acute illness sometimes ruining your taper. In your place I would want to go back to 7 mgs. It is the dose that replicates the amount of Cortisol that our Adrenals make. I think that’s why it’s such a tricky stage for lots of us. Dip below that and your own Adrenal system has to wake up and begin to produce its own Cortisol. That can produce symptoms too and worsen Pred withdrawal symptoms, in my experience. Perhaps your body and the disease process is simply not ready for that yet. See what your Rheumatologist thinks. Mine calls me “ a sensible patient” and more or less let’s me manage it myself.
Forgot to say, my afternoon fatigue seems to be a constant. I do get up at 5:30a.m. and by 1p.m. am almost desperate to lie down. Occasionally I can manage to get through the day upright. I accept the fatigue because the prednisone is not good for my elevated eye pressure, nor my heart problems. Oh! the problems of getting old! However, I am sill here.
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