High dosage again
Posted , 9 users are following.
Hi have been back to the Drs again today as still in pain, left shoulder, neck & arm. Also getting tingling and pins & needles in left arm and hand. Was on 7 5 preds for the last 6 weeks went down to that from 10. He's now said go back up to 20 for a week then 15 for the week after, then go back to Drs. Am feeling very down at the moment and sooo tired.
2 likes, 23 replies
tina-uk_cwall jo27931
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however, why did you make such a huge reduction from 10mgs to 7.5 mgs? If you had taken the reduction in a smaller amount you might have been ok but because of the giant reduction you won't know if you would have been ok at 9.5.
i say slowly but surely. I follow Eileen's dead slow and almost stop regime but only ever reduce by .5.
of course you're feeling very down at the present, but get the flare under control and try again more slowly. Good luck, christina
jo27931
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tina-uk_cwall jo27931
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constance.de jo27931
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jo27931
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tina-uk_cwall jo27931
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beatrice74480 jo27931
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jo27931 beatrice74480
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bob73443 jo27931
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I might not be doing this right, but here's how I'm handling the reductions.
I do follow Elaine's dead-slow method.
At doses below 20 mg, I have never been pain-free. I'd say I'm 50% pain free in the AM, and by evening I'm 80% pain fee.
I've just gone from 10 mg to 9 mg, and I do have more pain in my neck, shoulders, upper legs, and also have tingling on my right shoulder blade. But my inflammatory markers from blood tests are all within normal range, so even though I am in more pain I am not going to go back up in my dosage.
Although I am very,very grateful for the existance of prednisone, I am also leery of its known side-effects, many of which I am experiencing. My goal is to get off the prednisone as soon as I can, although I realizet that might not be for years.
All the best!
jo27931 bob73443
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tina-uk_cwall bob73443
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many patients are never entirely pain free whilst on preds. I am very lucky in that I am so identifying flares is easy, but for those of you who are never totally pain free you must learn to recognise when the everyday pain of PMR turns into a flare. For example, if whilst you are on one dose you suffer 50% PMR pain, if you reduce to your next pred dose and the 50% pain level after a couple if days increases to 60% then 70% etc then that tells me you are beginning to experience a flare and as much as none of us like to increase our dose of preds you may have to and quickly in order that the flare is kept under control.
remember that blood tests are not 100% accurate, so just because they say they are within normal range it doesn't always mean that. Eileen for example has had PMR for over 10 years and not once has her inflamatory markers ever been raised.
Please bob, just be careful and if at any point you really do feel as if the PMR background pain is getting worse do consider upping your preds to get the inflamation back under control. Also I sort of follow Eileen's dead slow and almost stop method but I only ever reduce by .5 and not 1mgs. All the best, christina
bob73443 tina-uk_cwall
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Yes, I understand what you are saying and do appreciate your advice.
In the end, we are all on a very personal journey aren't we. We take in as much info as we can and then do whatever we think is the right thing for US.
As so many of us say, thank goodness for the people on this forum.
EileenH bob73443
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pat38625 jo27931
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jo27931
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EileenH jo27931
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However - your complaint of pins and needles isn't typical of PMR but more in line with something called myofascial pain syndrome which causes back muscles to go into spasm and pinch nerves causing referred pain and so on. It is often found alongside PMR but responds far better to targetted local treatment rather than oral pred - cortisone injections into the trigger points which are in the shoulders. mid back and lower back, in each case alongside the spine about 2-3 inches away.
I have always found Bowen therapy helps a lot too - non-invasive and you don't need a doctor to prescribe it, just you have to pay the sessions of course. You know within 3 sessions at most if it is going to help although you may need a few more for best results. Often just one session will make a difference. It may not get rid of all the pain but getting rid of a fair bit makes such a difference. Quite a few people on the 3 forums have tried it and found it has helped.
tina-uk_cwall jo27931
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however, I would be worried too if my Dr wanted me off preds as quickly as he now wants you off them, after all 2 years to be treated for PMR isn't that long and you only had to up the preds following a reduction from 10 to 7.5 which as I said at the time was too great a drop and I think it was that drop that caused the flare not the fact that you don't have PMR and or the preds no longer work. Eileen, what do you suggest re the weaning off of preds? Regards, Christina
EileenH tina-uk_cwall
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And of course - this is effectively a relapse so could behave totally differently from the first lot. It does happen. If things get a lot worse as you reduce the pred dose I'd also hope he would change his mind.
Is this a GP Jo or is it a rheumatologist?
jo27931 EileenH
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jo27931
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I was given 6 lots of cortisone injections and that didn't work either. Also I paid out nearly £300 for massages and that made it worse.
EileenH jo27931
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That aside - you need a specialist now, your GP is out of his depth. So might a rheumatologist I suppose but there is a chance they may have a broader view.
jo27931 EileenH
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EileenH jo27931
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I do hope you get an answer soon.