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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@noosat1

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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Well noosat no-one really enjoys taking any type of medication but lets face it we need medication to enjoy some quality of life. Prednisone at a low dose is not to bad yes there could be side effects but overall is isn't to bad. Yes try reducing at a slow rate & if it doesn't work up it. As I had said on one of my replies keep active it helps take your mind off the discomforting pain.

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@noosat1

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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I have found that using any pain medication stopping or reducing may cause leg cramps. I had to quit pain meds. I could take the leg pain while I waited for refill. I don't wa not nt this pain
Just me. I know most NEED the pain meds. I am trying treadmill and healthy diet. Again, just me.

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@johnbishop

That's good news. Thanks for the update @noosat1!

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Hi John, Went to MD yesterday. I had been on 7.5mg (self imposed) for one week. My SED rate has gone from 57 to 26. Advice was to stay at this level for at least another week, preferably 2 weeks befoe trying to lessen dosage. He was pleased with SED, but wants it to go below 20. When trying to drop dosage, If I feel pain to go back up again. Cheers, hope you are well.

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@noosat1

Hi John, Went to MD yesterday. I had been on 7.5mg (self imposed) for one week. My SED rate has gone from 57 to 26. Advice was to stay at this level for at least another week, preferably 2 weeks befoe trying to lessen dosage. He was pleased with SED, but wants it to go below 20. When trying to drop dosage, If I feel pain to go back up again. Cheers, hope you are well.

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Very good to hear that you are dong well…..do as you are told and don't get too impatient …….Beryl

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@noosat1

Hi John, Went to MD yesterday. I had been on 7.5mg (self imposed) for one week. My SED rate has gone from 57 to 26. Advice was to stay at this level for at least another week, preferably 2 weeks befoe trying to lessen dosage. He was pleased with SED, but wants it to go below 20. When trying to drop dosage, If I feel pain to go back up again. Cheers, hope you are well.

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@noosat1, I'm with @beryl. Glad to hear you are doing well. Patience is important ☺ Keep it up!

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@johnbishop

@noosat1, I'm with @beryl. Glad to hear you are doing well. Patience is important ☺ Keep it up!

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Thanks so much for all the encouragment

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@johnbishop

@noosat1, I'm with @beryl. Glad to hear you are doing well. Patience is important ☺ Keep it up!

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Forgot to add, M.D. thinks it a very good Idea to join gym. He knows they have special classes to help with flexibility and strength for people with physical problems. He said that I should not think of trying treadmill until my muscles have recovered some of the initial strength. Although he practices "family medicine," his specialities are sport medicine and pain management. I started going to him over 15 years ago because of shoulder overuse pain. He starts with good diet and exercise. I asked him about going to a rheumatologist. He said he would recommend one if that is what I want to do, but that he does have patients with PMR. I'm staying with him at this time.

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This is @beryl There might be someone that remembers me ……It’s a long time since my last post…..I have been told I am in remission from my PMR having suffered for ten or more years……but still on prednisone trying to reduce to the point that I can stay at for life I expect! …..I still have pain in my legs , I’m told that it is nerve pain from my spinal stenosis…..what ever it is I live with it and take a small amount of Norco at night so I can sleep…. I have osteoporosis in the lower spine….
Had an op to remove access bone and a metal clamp to keep my spine from moving out of position ….well that’s me up to date …..I would like to hear from any of you that may remember me and to hear now you are …….I try to ignore what’s going on and smile so as not to be an old grump ……stay happy and good luck to you all suffering with PMR. Beryl

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@beryl

This is @beryl There might be someone that remembers me ……It’s a long time since my last post…..I have been told I am in remission from my PMR having suffered for ten or more years……but still on prednisone trying to reduce to the point that I can stay at for life I expect! …..I still have pain in my legs , I’m told that it is nerve pain from my spinal stenosis…..what ever it is I live with it and take a small amount of Norco at night so I can sleep…. I have osteoporosis in the lower spine….
Had an op to remove access bone and a metal clamp to keep my spine from moving out of position ….well that’s me up to date …..I would like to hear from any of you that may remember me and to hear now you are …….I try to ignore what’s going on and smile so as not to be an old grump ……stay happy and good luck to you all suffering with PMR. Beryl

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Hi @beryl, Welcome back! I do remember you and I'm happy to hear you are doing OK. Also glad to hear your PMR is staying under control even though you are having some nerve pain? You mentioned you are still on prednisone. Do you mind sharing what dose you are at?

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No recommendations. I have had pain return in my neck, shoulders and between shoulder blades after reducing from 15mg to 12.5, then upped it to 13.75 and now back to 15 mg. Jaws started raging after supper the other night. Went into ER the next morning as the jaws were still bad. Then that stopped (so far), but the neck and shoulders this morning are not good. Neurologist recommended staying at 15 mg to see if I "level off" and then will decrease by 1 mg. in another week. Quite the rocky road by times, but nothing compared to the pre-diagnosis pain. Good news is I finally have a Rheumatology Clinic appointment for May 30, also an actual Rheumatologist. The "urgent" referral has been since Jan. 5/22. Canadian medical system may be free, but it's not the best.

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@milld835

No recommendations. I have had pain return in my neck, shoulders and between shoulder blades after reducing from 15mg to 12.5, then upped it to 13.75 and now back to 15 mg. Jaws started raging after supper the other night. Went into ER the next morning as the jaws were still bad. Then that stopped (so far), but the neck and shoulders this morning are not good. Neurologist recommended staying at 15 mg to see if I "level off" and then will decrease by 1 mg. in another week. Quite the rocky road by times, but nothing compared to the pre-diagnosis pain. Good news is I finally have a Rheumatology Clinic appointment for May 30, also an actual Rheumatologist. The "urgent" referral has been since Jan. 5/22. Canadian medical system may be free, but it's not the best.

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So glad to know you are finally getting to see a rheumatologist. I'm sure that will be helpful to you. My PMR is currently in remission. The rheumatologist advised me to avoid strenuous exercise, especially stair climbing. That is not possible since I live in a house with four floors. I still have some residual pain and stiffness in my shoulders, buttocks, and thighs, but off of prednisone and over all good for a seventy-six year old person. I can relate to the jaw pain. When my PMR was active, there were times when I could not open my mouth to eat; it was too painful. I wish you good luck at your appointment with the rheumatologist and I hope you will update your treatment and progress.

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@scpartain

So glad to know you are finally getting to see a rheumatologist. I'm sure that will be helpful to you. My PMR is currently in remission. The rheumatologist advised me to avoid strenuous exercise, especially stair climbing. That is not possible since I live in a house with four floors. I still have some residual pain and stiffness in my shoulders, buttocks, and thighs, but off of prednisone and over all good for a seventy-six year old person. I can relate to the jaw pain. When my PMR was active, there were times when I could not open my mouth to eat; it was too painful. I wish you good luck at your appointment with the rheumatologist and I hope you will update your treatment and progress.

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I'm so happy you're in remission. Such good news! Thanks for your update. I live on the second floor. Sometimes I go up quickly, other times it's a struggle bus. I'm sure I will overcome the residual pains too. Just a matter of tapering a little more slowly. 2.5 mg was somewhat overzealous. I now have a prescription for 1 mg. Prednisone so that will make the downward trend easier. Next time I update, I will be saying "I'm in remission". So be it!

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