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.

Liked by Dee

@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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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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