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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Last night I went to bed without taking any Pred during the day or any Tylenol. I did take a Xanax. I actually got 7-8 hours sleep, getting up once for bathroom. I awoke with left leg and hip slight pain/discomfort. To-day is another test day as I am hoping the terrible pain does not recur. If it does I will go back on Pred. I expect some pain/discomfort in hips, back as I have osteo. I can live with that as I want to keep away of the Pred side effects

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@noosat1

Last night I went to bed without taking any Pred during the day or any Tylenol. I did take a Xanax. I actually got 7-8 hours sleep, getting up once for bathroom. I awoke with left leg and hip slight pain/discomfort. To-day is another test day as I am hoping the terrible pain does not recur. If it does I will go back on Pred. I expect some pain/discomfort in hips, back as I have osteo. I can live with that as I want to keep away of the Pred side effects

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

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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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I just read your story and noticed that you have problems w/your hands/fingers, wrists…I’ve been diagnosed with PMR and am on 25 mgms prednisone…am having some spasms now in my fingers. Also, my ankles are swelling very quickly when I’m standing. Have you encountered any of this? Any info is helpful. Thanks, Roland.

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@dreamer38

I just read your story and noticed that you have problems w/your hands/fingers, wrists…I’ve been diagnosed with PMR and am on 25 mgms prednisone…am having some spasms now in my fingers. Also, my ankles are swelling very quickly when I’m standing. Have you encountered any of this? Any info is helpful. Thanks, Roland.

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Roland, I did have those symptoms. I have been off prednisone now for about a week. The swelling has gone down also some itching in ankle area. After about 5 hours, sometimes 6, I wake with pain in fingers and thighs. It is not unbearable. I get up and walk around a little, drink some water and then go back to bed and drowse for a few more hours. Prednisone affects my vision, I have raised pressure for which I use eye drops. Also I feel more heart flutters at night when I am using it, consequently, I look for alternatives, such as Tylenol and learning to live with a certain level of pain. I concentrate on good organic diet (I think Mayo or some other site has a recommended diet for this problem, calming meditation so as not to constantly dwell on how PMR is affecting my body (don't look for pain) For the new year, I want to concentrate on recovering muscle strength as, at my age, being very sedentary for 3-4 months I lost a lot.

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@johnbishop

Hi Peach @peach414144 — I'm sorry to hear you are hurting. I think Lioness may be right that you could have Lymphedema. I was diagnosed with it last year and now wear compression socks to control the swelling. I don't really like wearing them and they are a pain to put on and take off but they do their job to control the swelling. Mayo Clinic has some information on the condition here:
https://www.mayoclinic.org/diseases-conditions/lymphedema/care-at-mayo-clinic/mac-20374693
Hope you find some answers to help.

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Hi John, just saw your comment re the compression socks…have you tried putting them on inside out? It’s so much easier! Start with the toe and keep pulling. Perhaps you’ve already done this. By the way, I am now down to 20 mgms Prednisone from 30. Not sure if the side effects I get are from the Prednisone or the PMR. Now I have a lot of calf muscle pain…don’t know if it’s from the Actonel I’m on. Do you take water pills for the swollen ankles? Sitting or standing fills up the ankles very quickly! Hope you have some success with turning the socks inside out…truly, it does work!

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@dreamer38

Hi John, just saw your comment re the compression socks…have you tried putting them on inside out? It’s so much easier! Start with the toe and keep pulling. Perhaps you’ve already done this. By the way, I am now down to 20 mgms Prednisone from 30. Not sure if the side effects I get are from the Prednisone or the PMR. Now I have a lot of calf muscle pain…don’t know if it’s from the Actonel I’m on. Do you take water pills for the swollen ankles? Sitting or standing fills up the ankles very quickly! Hope you have some success with turning the socks inside out…truly, it does work!

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Hi @dreamer38, thanks for the tip. It's similar to how I put the compression socks on. I reach inside and pull the heel out and have half the sock inside out, then pull them up to the toe and over the heel. I will have to give it a try tomorrow if I remember ☺ I don't take water pills. I already take a diuretic pill for my high blood pressure. I do try and drink plenty of water but I'm sure it's not the amount I should be drinking.

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@johnbishop

Hi @dreamer38, thanks for the tip. It's similar to how I put the compression socks on. I reach inside and pull the heel out and have half the sock inside out, then pull them up to the toe and over the heel. I will have to give it a try tomorrow if I remember ☺ I don't take water pills. I already take a diuretic pill for my high blood pressure. I do try and drink plenty of water but I'm sure it's not the amount I should be drinking.

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It's Beryl……..really funny reading about how to put your compression socks on …..that is the way my Mother told me to put my socks on as a child when first learning …….and I still do it ……ha ha …..Beryl

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@johnbishop

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

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You've probably seen from more recent posts that PMR pain came back with a vengeance. Now trying different doses. Yesterday 5mg in moring and 2.5 at night.3.a.m woke with leg pain, but not unbearable. Thanks for all your good advice

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@noosat1

Roland, I did have those symptoms. I have been off prednisone now for about a week. The swelling has gone down also some itching in ankle area. After about 5 hours, sometimes 6, I wake with pain in fingers and thighs. It is not unbearable. I get up and walk around a little, drink some water and then go back to bed and drowse for a few more hours. Prednisone affects my vision, I have raised pressure for which I use eye drops. Also I feel more heart flutters at night when I am using it, consequently, I look for alternatives, such as Tylenol and learning to live with a certain level of pain. I concentrate on good organic diet (I think Mayo or some other site has a recommended diet for this problem, calming meditation so as not to constantly dwell on how PMR is affecting my body (don't look for pain) For the new year, I want to concentrate on recovering muscle strength as, at my age, being very sedentary for 3-4 months I lost a lot.

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To all that suffer from PMR think positive. This is what I mean I am almost 78 PMR came on 2 years ago very depressing when it props up then as time went on I learnt to live with it. I told myself I'll be darned if this is going to get the best of me. Now I do gym work 4 days a week, this time of the year I down hill ski, summer time I still take trips on my motorcycle. Active you might say but believe me it take my mind off the discomfort to the point that at the end of the day I am amazed on how good I feel & then of course the next morning it starts all over again. The big secret is keep active volunteer at the hospital or something I myself I am with our local police dept. for the last 12 years. KEEP MOVING

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Agree completely ! I volunteer at the local Nature Center 4 hrs every Thursday, 2 hrs weekly at library book store, go to a book club once a week, and go outdoors as much as possible with Lily, dog. Cannot play tennis or pickleball any more, because I relied a great deal on fast feet, however this month starting back to the gym for at least 3 days per week. Keep it up and stay happy.

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@noosat1 and @rolandhp You two are such an inspiration with your “getting on with life” attitude! As soon as I can, I need to get back to all my volunteering. It makes such a difference! Thank you, Becky

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@rolandhp

To all that suffer from PMR think positive. This is what I mean I am almost 78 PMR came on 2 years ago very depressing when it props up then as time went on I learnt to live with it. I told myself I'll be darned if this is going to get the best of me. Now I do gym work 4 days a week, this time of the year I down hill ski, summer time I still take trips on my motorcycle. Active you might say but believe me it take my mind off the discomfort to the point that at the end of the day I am amazed on how good I feel & then of course the next morning it starts all over again. The big secret is keep active volunteer at the hospital or something I myself I am with our local police dept. for the last 12 years. KEEP MOVING

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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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