How to address PMR pain while decreasing prednisone

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

Hi Sue, I tried to excercise and push myself but found that it did not help. For me if I do not feel good in my body I rest and just do things that I can manage, I walk and try to do around 8000 to 10,000 steps a day walking briskly but not pushing it too far, that also depends on how I feel. I am fortunate in that I have a love for photography and that takes me to another place when I am in pain. Just walking around in nature and fresh air takes me out of the pmr world. I carry a backpack which weighs around 10kg and have found that while doing my photography and moving around I am limited in how long I can carry the pack for, when I stop and take the pack off my shoulders and arms are very sore, usually takes a couple of days to settle. I put on a fair amount of weight around 10kg and that did not make me feel better either, but I went on 800cal a day for two weeks and felt wonderful, very little carbs and lots of vegetables and protein, so feel that diet has a big role to play in this. Keep a food diary and log how you feel after each meal, you may pick up that something you are eating is flaring you up. PMR is a waiting game and you have to just give in to it and accept that it will take as long as it takes to get off the prednisone, like you I wanted to be off prednisone as soon as possible. I also am taking CBD syrup, the CBD oil is still not readily available in New Zealand and I have found that it helps me sleep at night. My advice is to be patient, once I was on 10mg from the 20 which took 3 months, I then reduced 1mg every 4 – 6 weeks because if I did it any sooner the pain would return, usually had a couple of days of pain once I lowered but settled after a few days and my body got used to the lower dose. Good luck Sue, I hope that this helps in some way. Kind Regards Linda

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Hi Linda and Sue, This is my 3rd bout of PMR. During the first (age 57), I was exercising 5 days a week. My rheumatologist told me to do range of motion, not any heavy weights. I did walking and aerobics. This time, I am 73, still doing a senior aerobics class. I would like to walk more, but we have ice-covered sidewalks here so I am waiting for spring. I love the idea of photography or really any reason to be out in nature. I did have some problems with sciatica in January. Rheumatologist told me it was not related to PMR, but I find the PMR pain may cause you to use body differently. I got exercises from a friend who had seen a PT for sciatica, first rested with anti-inflammatory, then started those exercises, now that pain is gone. I get impatient with the PMR. The first bout, I was on prednisone 2 years, then in remission 12 years, then it came back 2 1/2 years ago. I went off prednisone in 10 months, then it came back. In retrospect, I think I came off prednisone too fast, so these last 2 are part of the same episode. I will be patient this time and come off very slowly. I am a retired dietitian/diabetes educator, so know about the increased appetite with prednisone and try to employ tactics to prevent gain. Food, however, tastes so good. I need to keep tasty temptations out of the house, do 3 meals at regular times, use the plate method, etc. I weigh daily. This is a frustrating condition, but livable.

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@suemck

Thank you John for the welcome! Also, thank you for sharing with me how you taper down. I have heard of Dupuytrens Contracture from friends and I think surgery corrects that. I feel like my pain is at about a 7 on a scale of 1-10 when I have to take 7mgs, which kind of frustrates me as it so hard to get through the day doing simple tasks that seem to me like it takes forever. Before I got PMR I ran 9 miles 3 times a week and did weight lifting for my arm. Tried to maintain exercise since I have been on Prednisone, but when I got down to 5mgs for 5 days in October, I had a terrible flare up with sciatic pain and could hardly walk. So now I do the elliptical 3 times a week for 35 minutes because everything else I try to do makes my back hurt and the sciatic pain always returns. Want to do so much more, but can't. Much luck with your doctors appt in March and hope your hand problem will get resolved. Thank you again for your response and all your valuable information.

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What we did in the past is over, what we do in future has yet to come so today is our gift to do as we want!! So ENJOY today!!😀😊

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@suemck

I am a 65 year old female diagnosed with pmr in October of 2019 after suffering through shoulder pain and 2 frozen shoulders stating in March of 2019, lower back pain in April along with whole body stiffness and pain. I was put on 20mg prednisone and have tapered down to 8mgs. Everytime I go down to 7 mgs I get in terrible pain all over. I have been yoyoing between 7mg & 8 mgs since May 2019. I read in a book a new way to taper down. Instead of dropping 1 mg per month, you start the next month with 6days of 8mg then 1 day of 7mg, then 5 days of 8mg and 2 days of 7mgs etc, etc. using this new method of tapering down, for the month of February, I am finding on the day I go down to 7mg, I am in terrible pain for the day until I take 8mg the next day and then feel better. Was wondering if anyone has had trouble tapering from 8 to 7 mgs. Also, in September 2019 I did get down to 6mgs, but my hands starting cramping up -hard to open in the morning, can't straighten them out fully anymore. This starting happening before I got on the prednisone, but when I got on 20mgs, my hand problem went away. My rheumatologist says that my hand and back problems have nothing to do with pmr. When I did get back up to 8mgs for a while, my hand problem did get better, but still can't straighten them out. Also, when I got to 6mgs I got terrible weakness in my wrist and arms making it hard to open windows, or carry anything weighing more than 5 lbs etc. Was wondering if anyone has experienced these problems and was hoping to get some advise about what to do, or is this normal and I will be on prednisone a lot longer than I had anticipated? Thank you, SueMck

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For now I would stay on a dose that you feel good at AND do not change that dose and TAPER down slowly. You will feel better and worry less😉

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@calicojoy

For now I would stay on a dose that you feel good at AND do not change that dose and TAPER down slowly. You will feel better and worry less😉

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Thank you for your response about tapering down slowly. Right now it seems like that is the only way for me to be able to function. I know I wouldn't be able to do the things I do if I were not on the prednisone. So I guess I should be grateful that I can take a medicine that can help. Thanks again!

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Ive been on 2 mg/day prednisone for a couple of years although I dont really know if I need it anymore, it just seemed easier to continue.But I am thinking its time to finally taper off. anyone have a workable tapering schedule to go from 1 mg morning , 1 mg evening to complete elimination?

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@ayjaydee

Ive been on 2 mg/day prednisone for a couple of years although I dont really know if I need it anymore, it just seemed easier to continue.But I am thinking its time to finally taper off. anyone have a workable tapering schedule to go from 1 mg morning , 1 mg evening to complete elimination?

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Hi @ayjaydee, Have you talked to your rheumatologist about tapering off? Each person is different but hopefully it won't be hard since you are already at 2 mg. 1 mg tablets can be split with a pill splitter fairly easy. If it were me, I might try to just take the 1 mg in the morning, skip the evening and see how you feel during the night. Then go for a couple days with just the 1 mg in the morning to see if the pain is too much. If it's OK, try going for 1/2 mg in the morning to see if the pain is OK. If the pain comes back, just try bumping it up by 1/2 mg. My first occurrence with PMR I was going back and forth between 1 mg and 1/2 mg until I was finally able to stop taking prednisone.

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@johnbishop

Hi @ayjaydee, Have you talked to your rheumatologist about tapering off? Each person is different but hopefully it won't be hard since you are already at 2 mg. 1 mg tablets can be split with a pill splitter fairly easy. If it were me, I might try to just take the 1 mg in the morning, skip the evening and see how you feel during the night. Then go for a couple days with just the 1 mg in the morning to see if the pain is too much. If it's OK, try going for 1/2 mg in the morning to see if the pain is OK. If the pain comes back, just try bumping it up by 1/2 mg. My first occurrence with PMR I was going back and forth between 1 mg and 1/2 mg until I was finally able to stop taking prednisone.

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Thanks John. I'm a bit more conservative I guess as I was thinking 1 morning 1/2 evening for a week, then 1/2 and 1/2, then just 1, then just 1/2 and then zero

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@ayjaydee

Thanks John. I'm a bit more conservative I guess as I was thinking 1 morning 1/2 evening for a week, then 1/2 and 1/2, then just 1, then just 1/2 and then zero

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probably best to skip the just 1

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@ayjaydee

Thanks John. I'm a bit more conservative I guess as I was thinking 1 morning 1/2 evening for a week, then 1/2 and 1/2, then just 1, then just 1/2 and then zero

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@ayjaydee that sounds like a good plan.

Liked by ltta

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@johnbishop

@ayjaydee that sounds like a good plan.

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Thanks for your help John

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I have a long rather complicated history with PMR. I am 85 now. I was on Prednisone for over two years and it did certainly help with the pain. In May of 2019 I had to go by ambulance into hospital where I had an emergency colonoscopy and came out of it with an ostomy for life and then developed further complications with infections and not healing. The doctors in the hospital were adamant that I get off the prednisone immediately. It was their opinion that the drug was hindering healing and that the reason my ostomy bag would not stick on my skin was from the affects of the prednisone. To shorten the story I was in the hospital for five months, during that time I was completely taken off prednisone. I noticed after I came home (Nov,/1019) that I was having a lot more joint pain and when it hit my shoulders I realized that it was the result of my PMR without Prednisone. I am really afraid of starting to take it again after the reaction of the hospital doctors but my pain is quite severe. Does anyone have any thoughts on this?

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@bcstew

I have a long rather complicated history with PMR. I am 85 now. I was on Prednisone for over two years and it did certainly help with the pain. In May of 2019 I had to go by ambulance into hospital where I had an emergency colonoscopy and came out of it with an ostomy for life and then developed further complications with infections and not healing. The doctors in the hospital were adamant that I get off the prednisone immediately. It was their opinion that the drug was hindering healing and that the reason my ostomy bag would not stick on my skin was from the affects of the prednisone. To shorten the story I was in the hospital for five months, during that time I was completely taken off prednisone. I noticed after I came home (Nov,/1019) that I was having a lot more joint pain and when it hit my shoulders I realized that it was the result of my PMR without Prednisone. I am really afraid of starting to take it again after the reaction of the hospital doctors but my pain is quite severe. Does anyone have any thoughts on this?

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Hello @bcstew, Welcome to Mayo Clinic Connect. I'm sorry to hear about your complications using prednisone. Having 2 occurrences of PMR I can understand the need for relief from the pain. Have you discussed the complication with using prednisone with your rheumatologist? I'm wondering if they may have an alternative.

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@johnbishop

Hello @bcstew, Welcome to Mayo Clinic Connect. I'm sorry to hear about your complications using prednisone. Having 2 occurrences of PMR I can understand the need for relief from the pain. Have you discussed the complication with using prednisone with your rheumatologist? I'm wondering if they may have an alternative.

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No, I spoke to my GP and she said that other than painkillers like Tylenol with Codeine, Prednisone was the only thing would help.

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@bcstew

No, I spoke to my GP and she said that other than painkillers like Tylenol with Codeine, Prednisone was the only thing would help.

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@bcstew – I'm no medical expert and have no training but a rheumatogist is the specialist when it comes to PMR and similar conditions. If it were me, I would want to see the specialist or at least get a second opinion. Here's some information that may be helpful.

Any alternatives for Prednisone — https://www.hopkinsarthritis.org/ask-the-expert/any-alternatives-for-prednisone/

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