What does it mean is I cut back an evening dose from 10 to 5, and then in the am my right wrist sore and swollen, left forearm hurts, pain in the buttocks- upper back leg muscles and generally feel bruised and battered and stiff all over, difficult to get up and walk but no bilateral shoulder and hip pain which I had when I got diagnosed?
When I was diagnosed PMR, I had the classic PMR pains, labwork and xrays all verified PMR, and the prednisone helped dramatically and fast. I also at the time had concurrently developed swollen sore wrists and also could not get up easily. Could not put on a shirt...
Could my PMR have improved, so I could get by with less prednisone?
Taking 10mg and 10mg split dosing, I have been close to 100% perfect.
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sdowney717
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Don't do dose reductions in such large steps - a change of 5mg is enormous and we would say take AT LEAST 2 MONTHS to do it!
Go back to the 20mg dose and reduce much more slowly. Try just 2.5mg first of all and see if that works OK, if it doesn't it will have to be 1mg at a time. Then wait at least 2 weeks before trying another 1mg. You are not reducing the dose, you are TAPERING the dose and there is a difference. You are looking for the lowest dose that manages the symptoms as well as the starting dose did, While doing that, if you go down in too large steps there are two pitfalls: one is your body will protest violently about the change in dose, it is called steroid withdrawal. The other is that you may miss the dose you are looking for, It varies over the duration of the disease and you have to proceed carefully. At any given time it doesn't mean you won't get lower, just not yet.
DO read the FAQs - there is a lot of information there and we don't say it for no reason. There is bound to be a post there that would have stopped you dropping so much at once - not more than 10% of the current dose is recommended and for many even that is too much. You tried 25%!
Ok, I agree. This am I took some 4 Ibuprofen pills and all the pains are gone away as of the moment. wrist feels good. That took couple hours for it to work.
It is interesting that cutting back did not bring on any shoulder or hip paint at all, they are at 100% fully pain free. after 5 mg instead of 10mg in the evening dose. My morning glucose is also 50 points lower, was 88 this am which is great.
If ibuprofen helped the pain was almost certainly steroid withdrawal - but do be VERY careful about taking ibuprofen alongside pred as both of them can irritate the stomach and together the effect is even worse. You don't want a stomach bleed! Paracetamol/Tylenol would be better - but neither of them do a lot for most people's PMR pain.
You could try cutting the 5mg tablets to give 2,5 AND use one of the slowed tapers in FAQs if you can't get 1mg tablets. Some people manage to cut 5s into quarters successfully/
It sounds like you are cutting back too much at a time. Try dropping 1mg at a time and see if you still feel OK. You may get steroid withdrawal for a day or two but hopefully not.
I find it really hard to halve my 1mg tablets. They either go into crumbs, or I get three quarters and one quarter. I try so hard to position the pill correctly!
It just seems to work... I always get the pill right up tight and snug into the angle corner, the vertex, that's all, but you're probably doing that already.
Thanks, yes I try, but my fingers are lacking dexterity these days. OA I think. Do you need to put the pill with the half mark lined up with the cutter? I try to do this but it's very fiddly.
I have a pill splitter, these pills still do not divide cleanly. I cut back on last night dose again, but it was a little more than the previous night. Still no PMR typical pains. Feeling pretty good, I did take Ibuprofen, it has no ill effects for me and it cuts the other prednisone withdrawal pains. Glucose this am was 70, kinda low. Keep the cut back will also cut back on the evening insulin dose. Over the years, I notice that if my glucose falls much lower than I am used to, I feel various body aches.
"it has no ill effects for me " - the ill effects of irritation of the stomach lining may not be obvious until suddenly they are, in the form of a bleed. Make sure you take them with plenty of food and preferably with either a PPI or an H2 antagonist such as cimetidine or famotidine.
Trust me, the Ibuprofen will eventually cause stomach irritation (along with the Pred) and may cause ulcers or bleeding. Low back (sciatic) and groin/hip pain which is not helped by Prednisone, has caused me to use IB/Tylenol combo just to be able to walk. Now I have to take not 1, but 2 ppi's to protect my stomach.
You are on too low a dose of Prednisone to handle the inflammation and the tapering amount of 5 mg. is way too quick and too soon. So ALL the pain and stiffness will return and will continue to flare until the inflammation is under control. The pains you describe are typical to PMR and excrutiating. PMR has a mind of its own. Stick with and listen to this support group, without them I would have been lost. GPs and Rheumatologists, in general, know very little about this disease (also GCA), nor do they seem to want to learn.
I started at 20 mg. of Pred for PMR in Jan 2022 (unable to do anything) and only got down to 14 mg. by August, with a couple of flares because I was tapering too quickly at the behest of my rheumy. There is no race to get to less than 5 mg. or lower. PMR will (with miraculous intervention) last 2 years or longer. Slow down and let your body adjust. It is a very slow process this tapering. Listen to your body. A Debbie Downer I know, but it is an autoimmune disease. Acceptance of this is key...as well as patience.
"and then in the am my right wrist sore and swollen, left forearm hurts, pain in the buttocks- upper back leg muscles and generally feel bruised and battered and stiff all over, difficult to get up and walk but no bilateral shoulder and hip pain which I had when I got diagnosed?" (Excerpt from your original post.) This is PMR pain and you are saying you have no PMR pain like when first diagnosed. I started out with carpal tunnel-like symptoms, which eventually eased off, but I did have to where a brace. The thigh and buttock pain came a little later and was unable to sit on loo. Had to get a riser seat to get down to it.
No. I think it is prednisone withdrawal. As PMRpro said and if you go looking on the web, they say the same things. If I can drop pred usage it will greatly help my diabetes, on 10 and 10 pred, I was forced to inject 50 to 70% more insulin, and then it still spikes up. At 5, my AM glusoses have been below 100 which is excellent. Prednisone and diabetics who take insulin are a bad mix. I am greatly encouraged that I have no shouler or hip pain, just muscle ache. The swollen right wrist not even sure why that happens to me, but is not a PMR classic symptom which is bilateral pain of shoulders and hips.
Well body pains are improving except for my left knee is very stiff and sore which makes it hard to get up from a chair. It hurts pulling hard in and also trying to straighten it out. Right wrist is much better as is the leg muscles. Eventually knee works better as I use it. I had ZERO knee pains until I actually got on the prednisone back in late February. A month into taking prednisone, my knees, both of them starting getting sore. Especially I could not pull them in tight without a lot of pain. Ibuprofen does help the left knee feel better. Then the knee pains diminished to almost nothing over a few weeks until I dropped my evening dose from 10 to 5mg, and the left knee issue popped up again on the next day.
Still have zero shoulder or hip pain. When first diagnosed I was almost invalid with that typical PMR pain, but will say the hip pain diminished before starting prednisone and most of the extreme pain was in both shoulders and my neck felt bubbly when turning my head.
That hip pain was like a cold numbing pain deep next to the bones. Shoulder pain was like sparkling fire especially when lifting arms up. But none of the pains was actually joints, just the inflamed tissues around joints. Now all that has gone away. Before I could not dress myself, roll over in bed was extremely painful. Could not drive a car. Very much incapacitated generally. My CRP was 103 at the time.
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