Firstly may I take this opportunity of wishing you all success in managing PMR/GCA in 2021, especially those wise members whose advice and input has been incredibly useful in helping me and others on how to manage this condition.
Luckily for me my journey has been very insignificant compared to others. However I remain very wary about the dangers of this condition and how it can come back and strike in old and new areas of the body. I was first diagnosed in March of this year and told to take 15mg of pred daily. The effects were instant, within 8 hours all pains were gone. I was given a reduction programme which took me from 15 to 12.5 to 10 mg every 6 weeks and then down 1mg every 4 weeks. I am currently on 4mg. I have had pains during the period especially in the calf and cramps at night in the feet. However all of this disappeared over time. My current condition has been giving me some pain in the right shoulder and top of the back, especially after waking up when I have slept on my right hand side. I have seen a Rheumy privately for the past 6 months and had 3 sets of blood tests, the last appointment was last week and he said all bloods were good and that I could now reduce 1mg every 2 weeks until I was off pred and them take new blood tests for him two weeks after that. I asked him if that was not too quick and he replied that if I felt I wanted to extend it to 3 weeks I can do so if I wish.
This guy is highly respected and a top Rheumy in my county so I feel I should go to 3 weeks, especially as I have some shoulder and muscle pain in that area, even allowing that it is fairly mild. I am mindful that the experts advice on this site will tell me that is still far too quick to reduce and that I should take at least 6 weeks for each 1mg or even .5mg. I am also very aware of PMRpro's continuing excellent advice that I may be in a position with my shoulder pains that I have been taking just enough pred to hold off the PMR and that it is likely to reappear if I do not stop reducing too quickly. Sorry this is long winded from an individual whose current issues are very much at the bottom of the ladder compared with most of you, however I remain very wary of how this condition may strike whilst active.
What happens if I swallow say 10mg one night to see if all my mild shoulder pains disappear? Is this ok or is this a dumb idea? Maybe I should reduce at 1 mg every 8 weeks? Maybe I should take the Rheumy's advice and see what happens, Its costing me £170 a visit and is confusing me a little with the advice I read on this site.
I really am unsure which way to turn, my gut tells me to increase my dose and get rid of the shoulder and back pain allowing for it being mild. I have been on 4mg for two weeks.
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Gunflash
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My greatest concern with his approach is that he isn't allowing any time, both for return of adrenal function and because 4mg can be plenty to manage PMR, even 1mg can be enough to manage PMR, his reduction is not allowing enough time between new doses to be sure the new dose is still enough. It makes so much more sense once you have got to such a low and safe dose to allow such time rather than risk a flare or adrenal problems. If you do flare, you may end up on a much higher dose to get it under control again - losing all the perceived good of getting off pred altogether. Only 1 in 5 are able to get off pred altogether in under a year - you may be one, but I would want to test the water gently ...
Thanks PMRpro, I am back on the wagon! safe and slow reduction, I shall stay on 4mg for a six week period and if ok drop a half a tablet. Will continue on that procedure if no reactions.
Totally agree with PMRpro.....Rheumy is following the book too rigidly!
What he obviously hasn’t read is the comment that says ‘tapering should be in accordance with patient's wishes and the activity of the disease’ .
4mg is obviously too low for activity of disease!
You have a couple of choices really -
Go back to 5mg and see if that helps, or
a better option may be try 10mg for a couple of days then drop back down to 5mg....
Then 1mg every second month - or 0.5mg per month (same result) and maybe a slower tapering method - gives the adrenals a better chance - this is just one option - healthunlocked.com/pmrgcauk...
Many thanks Dorset Lady, please see my reply to PMRpro. If I continue to have shoulder issues in 3 weeks time when I will drop a half I will have a stab at your suggestion, which sounds very sensible.
Totally agree with what has been said. One thing struck me - you mentioned 1 shoulder, rather than bilateral. Might this be another joy to deal with? I have a bad shoulder/neck issue which is more apparent as I reduce pred. It is a long standing issue but does feel very different from the pmr pains.
hi herdysheep i have vicious gnawing pain right neck shoulder defo pmr inflaming arteries veins, morning most severe , does ease during day, as morphine and pred kick in.. few months ago same pain attacked my right hip not muscular nor skeletal, defo pmr, also had swollen left water ankle , left jaw pain with tender temple and sore scalp twice, cellulitis twice left elbow, multiple clots in lungs jan 1st, 3 x annaphylactic shocks in sept... so no vaccine for me as epipen carrier ... then first dec arrhythmic heart for 4 hours tachi and brady attacks,,, all par for this course of pmr and pred im on.... i know shoulder pain will go and pmr will truckle round my body looking for next vulnerable part of my inner venal system to blow up and inflame ... like an old inner cycle tube! this forum is my patch I stick on pmr and keep pedalling... meet you at the finish line.. we're all winners as we are in his together.
In my opinion, part of their issue is that they are used to dealing with "absolutes" and PMR treatment is anything BUT absolute. The other part is what the medical books reference for treatment and they don't study it beyond that point. I doubt PMR is very interesting to a GP or rheumy, so thus the boilerplate responses and treatment regimen.
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