Polymyalgia rheumatica

Posted by barbararene @barbararene, Feb 13, 2017

I have been diagnosed w poly myalgia rheumatica (pmr). Am taking 5 mg of predisone, was taking 10mg.
Every time I go on a low dose, symptoms come back. I can’t take pain meds, but do drink wine to ease pain, although I’m told no alcohol w prednisone. Anything you can share as far as info

@johnbishop

@lindapc, I think the moon face will go away once the prednisone dosage gets lower according to what I've read. I had to do some lifestyle changes to get rid of the extra weight I gained the first time my PMR occurred. I did do some dieting and exercising to lose the weight. I was also looking for answers for my small fiber peripheral neuropathy and had read a book by Dr. Terry Wahls – The Wahls Protocol. I used her basic diet and some of her smoothie recipes for my breakfast. I got to liking the green smoothies and will occasionally make one for my breakfast meal. She has a really inspiring story on her website here: https://terrywahls.com/about/about-terry-wahls/. I also joined Weight Watchers when I was struggling the most but finally realized that I had to make some lifestyle changes to control the weight and while Weight Watchers provided support and accountability I thought I could do it on my own for free if I made up my mind. I also purchased an inexpensive hybrid recumbent exercise bike elliptical combo and used it first thing each morning for about 30 minutes when I got up. It really helped loosen my legs and got me going in the mornings and it wasn't too strenuous.

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@johnbishop – Thank you John I really appreciate your comments and information. I think for me that is the most depressing thing about Prednison, I can put up with a bit of pain from the condition but when you have a body affect from the prednisone you look at yourself and it does not make you feel good. I thought that only being on 1mg now that my face would go down, maybe when I loose the weight then my face will go back to hopefully normal. 🙂

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@lindapc

@johnbishop – Thank you John I really appreciate your comments and information. I think for me that is the most depressing thing about Prednison, I can put up with a bit of pain from the condition but when you have a body affect from the prednisone you look at yourself and it does not make you feel good. I thought that only being on 1mg now that my face would go down, maybe when I loose the weight then my face will go back to hopefully normal. 🙂

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You're doing great if you are down to 1 mg. Just keep working on it and take it one day at a time, one step at a time. When I get down I try think positive. There is a great site with some short videos to help you train your brain so to speak ☺
https://www.resilientoption.com/

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I would like to ask a new question, I am down to 4 MG and normally try to go down by 1/2 mg every 3 weeks, however I am feeling slight pain when I bend down and walk up the stairs. Do you wait for most of the pain to go away or do you still drop down on the medication? I do not want to make things worse. I have stayed on the 4MG for 4 weeks now and really want to lower it. At what point do you know it is okay to lower the medication? Are you asking for trouble if you lower it if you are still feeling some pain/stiffness on the current level you are at or do you wait? I just do not want to do it too soon. Any suggestions? thanks!!

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I had the same dilemma . I very slow tapered ,as you.
Had a little pain and stiffness that would crop up from time to time, but continued to taper. I am finally now off pred and if I'm a bit stiff, I'll take a celebrex or advil on occasion. Everyone seems to respond different.Best of luck to you.

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@ambershe

I would like to ask a new question, I am down to 4 MG and normally try to go down by 1/2 mg every 3 weeks, however I am feeling slight pain when I bend down and walk up the stairs. Do you wait for most of the pain to go away or do you still drop down on the medication? I do not want to make things worse. I have stayed on the 4MG for 4 weeks now and really want to lower it. At what point do you know it is okay to lower the medication? Are you asking for trouble if you lower it if you are still feeling some pain/stiffness on the current level you are at or do you wait? I just do not want to do it too soon. Any suggestions? thanks!!

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@ambershe you are doing great. Like @kdmorris says everyone responds a little different to tapering off of prednisone. My first occurrence of PMR took 3 years to taper off. The last six months was going back and forth between 1 mg and 1/2 mg until I could stop taking it and only have a little pain and stiffness. I was tapering on a weekly basis. If it were me I would try going down 1/2 mg for 3 days to see how the pain level is. I think it helps to keep a tapering log for future reference. Good luck and don't give up!!

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@ambershe

I would like to ask a new question, I am down to 4 MG and normally try to go down by 1/2 mg every 3 weeks, however I am feeling slight pain when I bend down and walk up the stairs. Do you wait for most of the pain to go away or do you still drop down on the medication? I do not want to make things worse. I have stayed on the 4MG for 4 weeks now and really want to lower it. At what point do you know it is okay to lower the medication? Are you asking for trouble if you lower it if you are still feeling some pain/stiffness on the current level you are at or do you wait? I just do not want to do it too soon. Any suggestions? thanks!!

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I tapered to 4.5mg. but after 2 weeks have had to go back to 7.5 because of increasing pain during the night in my legs. I am being active. walking each morning, so hoping to start tapering again soon. My doctor does not really advise on prednisone amount. I think this may be because we are all different. I know the difference between discomfit and pain – can tolerate quite a lot of discomfit. However, it becomes a problem for me when it really interferes with my mobility. Being stressed by this can also initiate a flare up. I want to try o get into best mobile condition for trip to beach in November.

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@noosat1

I tapered to 4.5mg. but after 2 weeks have had to go back to 7.5 because of increasing pain during the night in my legs. I am being active. walking each morning, so hoping to start tapering again soon. My doctor does not really advise on prednisone amount. I think this may be because we are all different. I know the difference between discomfit and pain – can tolerate quite a lot of discomfit. However, it becomes a problem for me when it really interferes with my mobility. Being stressed by this can also initiate a flare up. I want to try o get into best mobile condition for trip to beach in November.

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I feel so similar to you! I started on 20mg of Prednisone 18 months ago. Im now down to 6mg. But, I still feel a lot of discomfort, especially in my legs. I find myself taking Tylonal 1 at least once a day. My rheumatologist advised that when I have a relapse, it is totally safe to go straight back to 20mg, but only for 2 or 3 days, to reset everything, then back to where ever I was. I havent dont this yet, but am very tempted. I only reduced to 6 from 7 one week ago, and now wonder if I should have. But, I do notice each time I reduce that I have a week or so of not feeling well, and then it seems to adjust. Good luck to you!
I have a question for others as well……For those of you that have reduced to 3mg or less, do you still feel side effects? I must say, I dont think I have any now at 6mg, or maybe I am just so darned used to it I dont notice! My thought is, that if I get down under 5mg, that maybe it doesnt matter if I have to stay there??? thoughts??

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@sallygosse

I feel so similar to you! I started on 20mg of Prednisone 18 months ago. Im now down to 6mg. But, I still feel a lot of discomfort, especially in my legs. I find myself taking Tylonal 1 at least once a day. My rheumatologist advised that when I have a relapse, it is totally safe to go straight back to 20mg, but only for 2 or 3 days, to reset everything, then back to where ever I was. I havent dont this yet, but am very tempted. I only reduced to 6 from 7 one week ago, and now wonder if I should have. But, I do notice each time I reduce that I have a week or so of not feeling well, and then it seems to adjust. Good luck to you!
I have a question for others as well……For those of you that have reduced to 3mg or less, do you still feel side effects? I must say, I dont think I have any now at 6mg, or maybe I am just so darned used to it I dont notice! My thought is, that if I get down under 5mg, that maybe it doesnt matter if I have to stay there??? thoughts??

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Hi @ sallygoose – I started on 20mg just about a year ago and are now down to 1mg, I still have side affects and have felt quite unwell, not from the PMR but the side affects. I still have a little stiffness in my shoulders and legs but not that bad that I have to take pain relief just uncomfortable and like you it usually goes away within a few weeks if I have no stress. But as most people say, we are all different and not everyone has the same side effects or even gets them. Good luck with reducing and its a decision that you have to make about staying on the prednisone but make sure you are well informed about the affects it has on your body that you do not show up as a side effect. My Doctor was not great in informing me but I did alot of research on the internet and also joined this group which has helped me to understand what parts of your body can be affected with this drug.

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@lindapc

Hi @ sallygoose – I started on 20mg just about a year ago and are now down to 1mg, I still have side affects and have felt quite unwell, not from the PMR but the side affects. I still have a little stiffness in my shoulders and legs but not that bad that I have to take pain relief just uncomfortable and like you it usually goes away within a few weeks if I have no stress. But as most people say, we are all different and not everyone has the same side effects or even gets them. Good luck with reducing and its a decision that you have to make about staying on the prednisone but make sure you are well informed about the affects it has on your body that you do not show up as a side effect. My Doctor was not great in informing me but I did alot of research on the internet and also joined this group which has helped me to understand what parts of your body can be affected with this drug.

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What kind of side effects do you get ?

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Hi @ noosat1 – I have quite bad palpatations, stomach upsets, sleeping is not good with really bad leg cramps, mood swings and feeling really depressed with crying for no reason, blood pressure has gone up, swelling of my legs, have put quite a bit of weight on and just generally feel unwell. What scares me is that I am now down to just 1mg and have not felt better from the side effects. Im trying to keep positive and say to myself that once off this it will take time to get back to normal…what ever that is.

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@lindapc

Hi @ noosat1 – I have quite bad palpatations, stomach upsets, sleeping is not good with really bad leg cramps, mood swings and feeling really depressed with crying for no reason, blood pressure has gone up, swelling of my legs, have put quite a bit of weight on and just generally feel unwell. What scares me is that I am now down to just 1mg and have not felt better from the side effects. Im trying to keep positive and say to myself that once off this it will take time to get back to normal…what ever that is.

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You might actually need to go back up. When on 4.5mg. I did not want to because of eye pressure and heart condition, however had "to bite the bullet" and went back up to 7.5mg and am feeling much better. At this level I find I can make up an exercise plan and do it. Three days I go to park with Lily, dog, walk as much as I can for the 50 minutes to an hour that I stay there and three days of of walking by myself on paved trail by the river. This morning it was the park. I walked for 28 minutes before sitting down for 2 minutes (this included some additional uphill) after 2 minutes of sitting, walked another 20 minutes. Came home and feeling good. My theory is that seeing the adrenal glands put out about 7.8 mg of cortisol, the 7.5 of prednisone takes most of the burden while the glands get ready to start producing again. I'm hoping I can go down to 4mg in a week and that the adrenals will step up to the plate. 🙂

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@noosat1

You might actually need to go back up. When on 4.5mg. I did not want to because of eye pressure and heart condition, however had "to bite the bullet" and went back up to 7.5mg and am feeling much better. At this level I find I can make up an exercise plan and do it. Three days I go to park with Lily, dog, walk as much as I can for the 50 minutes to an hour that I stay there and three days of of walking by myself on paved trail by the river. This morning it was the park. I walked for 28 minutes before sitting down for 2 minutes (this included some additional uphill) after 2 minutes of sitting, walked another 20 minutes. Came home and feeling good. My theory is that seeing the adrenal glands put out about 7.8 mg of cortisol, the 7.5 of prednisone takes most of the burden while the glands get ready to start producing again. I'm hoping I can go down to 4mg in a week and that the adrenals will step up to the plate. 🙂

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Thanks for your reply, however the side effects were there even when I had a larger dose, so just think it is taking its time to get out of my system. The PMR is manageable even on the 1mg so do not want to increase my dosage if I am coping okay, none of the symptoms I have are to do with the PMR only the side effects of the prednisone. 🙂

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@lindapc

Hi @ noosat1 – I have quite bad palpatations, stomach upsets, sleeping is not good with really bad leg cramps, mood swings and feeling really depressed with crying for no reason, blood pressure has gone up, swelling of my legs, have put quite a bit of weight on and just generally feel unwell. What scares me is that I am now down to just 1mg and have not felt better from the side effects. Im trying to keep positive and say to myself that once off this it will take time to get back to normal…what ever that is.

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@lindapc Hello, I’ve been reading your posts. It sounds like the hardest thing for you is the side effects. Did these only start as your prednisone dosage got lower? I ask because I’m supposed to start a taper this summer. Last Fall, when I tapered, I had a relapse in my disease, so I’m kinda wary. Have you spoken with your doctors about the side effects?
You also sound a bit depressed—aren’t we all! Having to deal with all these issues.
Maybe you need someone to talk to. I know my husband got really tired of hearing my complaints/sadness. A therapist (and a temporary increase in antidepressants) made things so much better. I know another big concern is the weight gain. I, too, have gained weight but not from the prednisone—just plain eating cookies and ice cream, the cure for everything! My sister also gained weight from prednisone but has been able to lose it all. Don’t get too discouraged. We’re all in this rocky boat together. Please stay in touch and let us know how you’re doing. Becky

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Try getting some CBD. It should help with pain, inflammation, sleep and possible make it feel at least ok to eat. I finally did this and can't believe the difference. There is no "high" with this as there's no THC involved. But it really helps me. I ordered CBD + at Amazon. Dr Oz had a doctor on and they all think its ok. Of course I still have to use my Fluocinoide 0.05% Gel 2 x's a day for now. fIts not a cure but helps get thru a flare. Best of luck to you and all of us who suffer from this illness.

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@grammlyn

Try getting some CBD. It should help with pain, inflammation, sleep and possible make it feel at least ok to eat. I finally did this and can't believe the difference. There is no "high" with this as there's no THC involved. But it really helps me. I ordered CBD + at Amazon. Dr Oz had a doctor on and they all think its ok. Of course I still have to use my Fluocinoide 0.05% Gel 2 x's a day for now. fIts not a cure but helps get thru a flare. Best of luck to you and all of us who suffer from this illness.

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I would not suggest getting CBD oil unless you’ve talked with your doctor first. They really should know everything you take. Everyone reacts differently and you don’t want to confuse symptoms with side effects with CBD oil. That being said, it does help some people but not others. Just have a chat with your doc!

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