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

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I am on 60 mg of predizone and bacterium 3 days a week. I have calcium,b12,b3,and magnesium to take I feel that I am not catching my breath back on some days but some days I can stand up and breath. I don't like that they gave me a low score from the government due to my information and that the government decides for mayo clinic.that is what blew me away and now I want a second opinion

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Hi John — yes to PMR diagnosis. Started 20 mg twice/day prednisone on 9/6. CRP was 30; now 1. Doc wants me to stay on dosage level for additional 2 wks to see a drop in Sed rate.

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@igolf

Hi John — yes to PMR diagnosis. Started 20 mg twice/day prednisone on 9/6. CRP was 30; now 1. Doc wants me to stay on dosage level for additional 2 wks to see a drop in Sed rate.

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Hi @igolf, Hopefully the SED rate drops when you have the next test done!

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@kp5450121

I am on 60 mg of predizone and bacterium 3 days a week. I have calcium,b12,b3,and magnesium to take I feel that I am not catching my breath back on some days but some days I can stand up and breath. I don't like that they gave me a low score from the government due to my information and that the government decides for mayo clinic.that is what blew me away and now I want a second opinion

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@kp5450121 Can you tell me some more about your lung disease? How long have you had it? Who suggested a lung transplant?

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@charlena

My husband is still on prednisone, it’s been nearly 2 years. He has tried several times to decrease, but has always had to go back to initial doseage.
He is again trying a reduced doseage. Do you mind telling us what your symptoms are?
At his last doctor visit as the doctor was going over his symptoms, etc. he made the statement, “….. polymylagia rheumatica, if that is what you have, . .. .” Needless to say, we weren’t happy with that statement. Another of his doctors advises that my husband’s symptoms are not like any symptoms of patients he sees that have polymyalgia rheumatica. I research daily on my husband’s symptoms and when I mention to his rheumatologist he doesn’t seem interested in other possibilities. Probably time for a new doctor.

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If you go to the Heathunlocked.com and type in PMR/GCA you will find.
A Wealth of information about these issues

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Agreed. They are bossy and forthright, but you will learn so much.

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Hi everyone,

It’s time to open a new group dedicated to Polymyalgia Rheumatica (PMR).

All discussions related to PMR can now be found in the PMR group here: https://connect.mayoclinic.org/group/polymyalgia-rheumatica-pmr/

+Follow the Polymyalgia Rheumatica group and continue to connect with others and share your experiences, ask questions and encourage each other.

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@ethanmcconkey

Hi everyone,

It’s time to open a new group dedicated to Polymyalgia Rheumatica (PMR).

All discussions related to PMR can now be found in the PMR group here: https://connect.mayoclinic.org/group/polymyalgia-rheumatica-pmr/

+Follow the Polymyalgia Rheumatica group and continue to connect with others and share your experiences, ask questions and encourage each other.

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Thanks Ethan, that sounds great!

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My rheumatologist put me on 30 mg for a week, then 25mg for a week lowering 5 mg a week until 15 mg. Then the dosage was lowered 2 1/2 mg a month. I was on prednisone for 10 months. In addition I took 2 hydroxy chlorofoquine sulphate 200mg from the beginning and still take them. Rheumatologist said they would make it easier to get off prednisone. I have been free of PMR for 3 years after suffering for 2 years thinking I had rotator cuff injury. Just saw the Rheumatologist and he wants me to stay on the hydroxy to prevent a recurrence. Good luck.

Liked by calicojoy, jth4d

REPLY

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

Liked by calicojoy

REPLY
@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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Hi @suemck, Welcome to Connect. I had trouble tapering off of prednisone for both occurrences I had with PMR. I cut my 1mg tablets in half and went down by 1/2mg when I was still having pain issues with the PMR. I did live with a little pain, maybe 1-2 on a scale of 1 to 10 which helped me finally taper off. The first occurrence took my 3 years to taper off. The second time I was able to taper off in about 1-1/2 years.

I have no medical background or training but I do have similar symptoms with my hands. I was diagnosed with severe carpal tunnel syndrome in both hands. When diagnosed I was told they could do surgery or try a shot. I think that was 2+ years ago. I had the shot but it really didn't help. Now I'm having the symptom your are having not being able to straighten my hands in the morning…mostly the middle finger on my right hand. I'm thinking this may be Dupuytren's Contracture but I haven't been to the doctor yet to find out. I have my regular checkup in March so will be discussing options with my doctor if it is indeed the issue.

Don't give up on the tapering. You just have to take it one day at a time. Have you made any changes in your diet to help? Here's some ideas.

Medical News Today – What to eat if you have polymyalgia rheumatica
https://www.medicalnewstoday.com/articles/321683

Liked by calicojoy

REPLY
@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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Hi@suemck, I was diagnosed in July 2018 and have been trying to taper down for the last 6 months from 5mg prednisone, it has gone in swings and roundabouts, the method I have used is reducing by 1mg per month once I was down to 10mg, I have got to the 1mg and found it really difficult to just stop as I get a flare up, so what I tried was reducing by days, I took 1mg every day for 2 weeks, then 1mg every alternate day for two weeks and I am now up to 1mg every 4 days. I cannot say I am pain free but it is bearable and subsides over days. I had my CPR level and it is down to 3 so hopefully in a few weeks all going well I can stop completely. I also have had strange pain reducing the prednisone, my knees are very sore and my feet ache, feeling of sharp tingling and heat in my legs, plus my body aches like the flu but not all the time. Think this may be related to my thyroid problem. I wish you every success in getting off the prednisone, but you also have to listen to your body and reduce when you feel the best, its no fun being in bad pain, my original plan was to be off prednisone in a year, but realise now that you also have to be sensible I have found this site a great place to get support and information as there is so little known about PMR and have had very little help or understanding from people around me apart from pills from my Doctor, so being able to talk to like minded people is a god send. Best wishes for a speedy recovery Linda.

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@johnbishop

Hi @suemck, Welcome to Connect. I had trouble tapering off of prednisone for both occurrences I had with PMR. I cut my 1mg tablets in half and went down by 1/2mg when I was still having pain issues with the PMR. I did live with a little pain, maybe 1-2 on a scale of 1 to 10 which helped me finally taper off. The first occurrence took my 3 years to taper off. The second time I was able to taper off in about 1-1/2 years.

I have no medical background or training but I do have similar symptoms with my hands. I was diagnosed with severe carpal tunnel syndrome in both hands. When diagnosed I was told they could do surgery or try a shot. I think that was 2+ years ago. I had the shot but it really didn't help. Now I'm having the symptom your are having not being able to straighten my hands in the morning…mostly the middle finger on my right hand. I'm thinking this may be Dupuytren's Contracture but I haven't been to the doctor yet to find out. I have my regular checkup in March so will be discussing options with my doctor if it is indeed the issue.

Don't give up on the tapering. You just have to take it one day at a time. Have you made any changes in your diet to help? Here's some ideas.

Medical News Today – What to eat if you have polymyalgia rheumatica
https://www.medicalnewstoday.com/articles/321683

Jump to this post

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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@lindapc

Hi@suemck, I was diagnosed in July 2018 and have been trying to taper down for the last 6 months from 5mg prednisone, it has gone in swings and roundabouts, the method I have used is reducing by 1mg per month once I was down to 10mg, I have got to the 1mg and found it really difficult to just stop as I get a flare up, so what I tried was reducing by days, I took 1mg every day for 2 weeks, then 1mg every alternate day for two weeks and I am now up to 1mg every 4 days. I cannot say I am pain free but it is bearable and subsides over days. I had my CPR level and it is down to 3 so hopefully in a few weeks all going well I can stop completely. I also have had strange pain reducing the prednisone, my knees are very sore and my feet ache, feeling of sharp tingling and heat in my legs, plus my body aches like the flu but not all the time. Think this may be related to my thyroid problem. I wish you every success in getting off the prednisone, but you also have to listen to your body and reduce when you feel the best, its no fun being in bad pain, my original plan was to be off prednisone in a year, but realise now that you also have to be sensible I have found this site a great place to get support and information as there is so little known about PMR and have had very little help or understanding from people around me apart from pills from my Doctor, so being able to talk to like minded people is a god send. Best wishes for a speedy recovery Linda.

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Dear Linda, Thank you for your response and I am so happy for you that you can take only 1mg every four days! I am so jealous! I also feel like my body has the flu without a fever, all the aches and pains everywhere. Was wondering if you have a regular exercise program that you do? I feel like I have such a long way to go before I can get to 1mg, but like you say you do have to listen to your bdoy and reduce accordingly. I hope you can stop completely in a couple of weeks. Thank you again for your response and all the information.

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