PMR - Decreased prednisone and pain returned

Posted by alan bruce @alanbruce, Dec 29, 2018

I was at 2mg for 6 weeks of prednisone and decided go down to 1 1/2 and after 2 weeks I started to have pain in my shoulders. Will 1/2 a mg make a that sort of difference. I have been on prednisone for 18 months and have gone up and down before… Any recommendation on what to increase the predisone to.

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Hi @beryl, I notice that you mention having a difficult time going up steps…is this from the Prednisone or the PMR? I’m finding it quite hard to get up stairs as well and not sure if it’s because I’m resting too much and should be pushing myself more!! Are you still taking Prednisone? Enjoy yourself in Sicily!!

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@beryl

I am pleased for you. I am in a hilltop town in Sisily and having a job with the steps and hills but doing it slowly My husband Ainslie is very patient with me and we are having a grand time. I come back to the hotel and put my hot pad on Off again soon have to get up these stone steps to the restaurant and some good Sisillian food and wine. It am not letting it stop me but it sure slows me down. Beryl

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Sorry put an s instead of a c Beryl

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@dreamer38

Hi @beryl, I notice that you mention having a difficult time going up steps…is this from the Prednisone or the PMR? I’m finding it quite hard to get up stairs as well and not sure if it’s because I’m resting too much and should be pushing myself more!! Are you still taking Prednisone? Enjoy yourself in Sicily!!

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Beryl, I too find stairs (steps) difficult.I am wondering if the problem is that for so many months I have been very sedentary. Also I think it is the disease because when not taking the prednisone, lifting my legs, even getting in and out of the car and bathtub, is more painful and difficult

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Hi Noosat1 stairs put more pressure on your legs and of course hills Cold makes your muscles tight therefore pulls on the tendons. Don’t now how to put it any other way. Beryl

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@beryl

Hi Noosat1 stairs put more pressure on your legs and of course hills Cold makes your muscles tight therefore pulls on the tendons. Don’t now how to put it any other way. Beryl

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Glad you are enjoying Sicily. I, with my daughter, plan to go on a trip somewhere, considering options, this year. I am determined to be in condition good enough to go. One of my great pleasures of the day is to have a shower as hot as I can stand it, with it aiming for my lower back and thighs most of the time. While under it, I bend and stretch. I believe it really helps to give more flexibility. To morrow plan on taking Lily for nail cutting then a trip to the park to let her run wild, then go to gym. and pick up application and look at classes.
So glad you have a patient and loving hysband. A support "group" really helps. 🙂
Maggie

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@noosat1

Beryl, I too find stairs (steps) difficult.I am wondering if the problem is that for so many months I have been very sedentary. Also I think it is the disease because when not taking the prednisone, lifting my legs, even getting in and out of the car and bathtub, is more painful and difficult

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Hi Noosat1 I think most people with PMR effecting their legs would say it is the PMR……but I have come across that question before ……so I think we are all different …….but for me it is PMR…..it is good for you to move around but also have to be careful not to over do things and make it flair up ……which I have a bit on my weekend in a Sicilian hilltop town called Rasusa…..but I don't regret it for one minute …..amazing buildings so old …..being English and my husband with an English Mum we miss all that in the USA…….I have just picked a lemon from the garden …..that's the sort of thing I love to do……Beryl

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I can relate. I loved it when I stood beneath an arbor in Chile and picked a Malbec grape just over my head. I is my favourite red wine. 🙂

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Yes half a mg can make a lot of difference ……my instructions are to take one more if necessary and always been told not to make big jumps either way …..but as I have stressed before we are all different and that's why we have a Rheumatologist to study the way we as individuals work ……but I stress you take advise from the people that know better about this disease….You of course always ask WHY……Beryl

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@noosat1

I can relate. I loved it when I stood beneath an arbor in Chile and picked a Malbec grape just over my head. I is my favourite red wine. 🙂

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Nice memories…….Beryl

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I am presently taking daily, in split dosage, 7.5mg. I am carefully monitoring myself, but have to say to myself, "every pain in your body is not necessarily caused by PMR." I do have osteoarthritis in my lower back/hips and somewhat in my hands. I had a restless night last night, my tendency was to think caused by PMR. However, it could have been that I had a very lazy afternoon reading for hours, and was already rested. So will continue on the usual dosage, not "up" it.

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@noosat1

I am presently taking daily, in split dosage, 7.5mg. I am carefully monitoring myself, but have to say to myself, "every pain in your body is not necessarily caused by PMR." I do have osteoarthritis in my lower back/hips and somewhat in my hands. I had a restless night last night, my tendency was to think caused by PMR. However, it could have been that I had a very lazy afternoon reading for hours, and was already rested. So will continue on the usual dosage, not "up" it.

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HiNoosat1 this,is Beryl……I have the same things as you …..I know we are all different and this may not work for but if I hurt in the way you describe and I take an over the counter drug it will not take the pain of the PMR away …..this may or may not help you but I thought I would say it in case you found it helpful……Beryl

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@rolandhp

Hi my name is Roland I have not been replying for some times now, but keep reading the PMR issues. Yes I have had PMR now for 20 months. I started with 20mg & went down to 5mg in 12 months. Then slowly down to 2-1/2mg for a couple of months I thought I was doing pretty good with that, then I noticed that the discomfort increased both wrist & fingers then my neck & shoulders I had to go back up to 5mg. Sounds familiar doesn't it, all typical with PMR patient's. I still work out at the gym 4 days a week & 2 days ago 6 hours on the shovel (snow removal). Yes I feel it but try to keep my mind off of it & that seems to work. John is as a good mentor he has done a lot of research on the auto immune disease he is the pro on it. Doctors cannot help you much with PMR & the dose of prednisone to take. MY Dr. says only the patient knows how much pain he or she can tolerate before upping or decreasing the dosage. Not much help I know but PMR has a mind of it's own it will leave you body when it feels like it. Hang in there it will get better.

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Good advice Roland. I find since I have reduced to 7.5mg, split dosage, that I fell discomfit in my legs in early hours of morning. However, to me it is not pain whereas to someone else it may be. I just "zone out" until I go back to sleep for a few hours. I do not want the ill effects of the prednisone. I am, somewhat impatiently, looking forward to reducing the dosage.

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