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

Hello Everyone. I live in Perth, Western Australia. I have posted on here before but not for a while. I was diagnosed with PMR in December last year, and put on 20mg of prednisone. I have been tapering ever since, ran into a bit of a flare when I hit 4mg. I have been on 4mg for 3 months, so feel a bit stuck. My CPR got down to 1 on 15mg, but has slowly risen to 26 while on 4mg. My doc wants me to stay on 4 for another 6 weeks, but I have decided to try 3mg then 4mg then 4mg. Just a cheeky little reduction. I just need to keep moving forward, and I feel fine, just stiffness in thighs and shoulders. Thoughts?

REPLY
@jules11

Hello Everyone. I live in Perth, Western Australia. I have posted on here before but not for a while. I was diagnosed with PMR in December last year, and put on 20mg of prednisone. I have been tapering ever since, ran into a bit of a flare when I hit 4mg. I have been on 4mg for 3 months, so feel a bit stuck. My CPR got down to 1 on 15mg, but has slowly risen to 26 while on 4mg. My doc wants me to stay on 4 for another 6 weeks, but I have decided to try 3mg then 4mg then 4mg. Just a cheeky little reduction. I just need to keep moving forward, and I feel fine, just stiffness in thighs and shoulders. Thoughts?

Jump to this post

I too, was diagnosed with PMR in December. I am down to 5mg, for 2 weeks, and hope to go down to 4.5 soon. I am a little apprehensive, still a lot of stiffness in legs, although twice this week I have improved walking distance. This may not be a good time to expect too much as this is the hottest month of the year, and hotter than usual, about 100 degrees F. One whole mg. seems a drastic drop for you to do at that low stage. Lots of Luck from an Aussi in the Texas hill country.

REPLY
@jules11

Hello Everyone. I live in Perth, Western Australia. I have posted on here before but not for a while. I was diagnosed with PMR in December last year, and put on 20mg of prednisone. I have been tapering ever since, ran into a bit of a flare when I hit 4mg. I have been on 4mg for 3 months, so feel a bit stuck. My CPR got down to 1 on 15mg, but has slowly risen to 26 while on 4mg. My doc wants me to stay on 4 for another 6 weeks, but I have decided to try 3mg then 4mg then 4mg. Just a cheeky little reduction. I just need to keep moving forward, and I feel fine, just stiffness in thighs and shoulders. Thoughts?

Jump to this post

Hi @jules11 — I've had 2 occurrences of PMR. The first time it took me a little over 3 years to taper off of prednisone. The second occurence 6 years later, it took me 1-1/2 years to taper off of prednisone. I lived with a minor amount of aches and pains at each taper point but kept going unless the pain was really bad. It might help to keep a tapering off log and write down the dosage and the pain level so that you have something to compare with each time you drop the dosage. I started tapering by 1/2 mg when it got difficult and that seemed to help me.

Good luck!

REPLY
@jules11

Hello Everyone. I live in Perth, Western Australia. I have posted on here before but not for a while. I was diagnosed with PMR in December last year, and put on 20mg of prednisone. I have been tapering ever since, ran into a bit of a flare when I hit 4mg. I have been on 4mg for 3 months, so feel a bit stuck. My CPR got down to 1 on 15mg, but has slowly risen to 26 while on 4mg. My doc wants me to stay on 4 for another 6 weeks, but I have decided to try 3mg then 4mg then 4mg. Just a cheeky little reduction. I just need to keep moving forward, and I feel fine, just stiffness in thighs and shoulders. Thoughts?

Jump to this post

This is Beryl …..I honk what John says is a more sensible move as you do not what a flair up….

I myself have been having trouble and am on 7.5mg with methotrexate 20mg once a week folic acid also …..I am improving but as usual very slowly …..pain level is never the same as it seems it goes with how much I have done that day ……but the good thing is where I had pain up to my waist it is now from thighs and down ……th stiff back was very difficult to deal with …..

I think I would say to you don't be in too much of a hurry this thing has a mind of its own …..but we are all different …..Beryl

REPLY
@jules11

Hello Everyone. I live in Perth, Western Australia. I have posted on here before but not for a while. I was diagnosed with PMR in December last year, and put on 20mg of prednisone. I have been tapering ever since, ran into a bit of a flare when I hit 4mg. I have been on 4mg for 3 months, so feel a bit stuck. My CPR got down to 1 on 15mg, but has slowly risen to 26 while on 4mg. My doc wants me to stay on 4 for another 6 weeks, but I have decided to try 3mg then 4mg then 4mg. Just a cheeky little reduction. I just need to keep moving forward, and I feel fine, just stiffness in thighs and shoulders. Thoughts?

Jump to this post

Hi @jules11 I live in Wellington New Zealand and have joined this wonderful group to try to understand this condition, I have found it very helpful and it has given me emotional assurance as I got very depressed with this. I was diagnosed back in July last year and are now on 1mg. I was instructed by my Doctor to reduce 1mg per month once I got to 10mg. I did okay, like you just had a bit of stiffness in my shoulders and hips, when I got around 4mg I had to listen to my body as the stiffness was still there and I waited until I felt almost pain free before I reduced, it was normally around 6 weeks rather than 4. I am reluctant to go off the 1mg as I had a bit of a flare up when my doctor changed my blood pressure pills, Im slowly feeling better but still have days where the stiffness and pain in my shoulders is quite bad. I feel that as long as you have symptoms you have to listen to how your body is and respond when your feeling okay. I know we all want to get off this drug and go back to normal but feel is it worth the risk of a flare up and then have to go back on a higher dose. I think patience is the name of the game, good luck.

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@lindapc

Hi @jules11 I live in Wellington New Zealand and have joined this wonderful group to try to understand this condition, I have found it very helpful and it has given me emotional assurance as I got very depressed with this. I was diagnosed back in July last year and are now on 1mg. I was instructed by my Doctor to reduce 1mg per month once I got to 10mg. I did okay, like you just had a bit of stiffness in my shoulders and hips, when I got around 4mg I had to listen to my body as the stiffness was still there and I waited until I felt almost pain free before I reduced, it was normally around 6 weeks rather than 4. I am reluctant to go off the 1mg as I had a bit of a flare up when my doctor changed my blood pressure pills, Im slowly feeling better but still have days where the stiffness and pain in my shoulders is quite bad. I feel that as long as you have symptoms you have to listen to how your body is and respond when your feeling okay. I know we all want to get off this drug and go back to normal but feel is it worth the risk of a flare up and then have to go back on a higher dose. I think patience is the name of the game, good luck.

Jump to this post

Yes it helps a lot to hear others are having the same experience It helps if you can try to 😃 difficult I know. Beryl

REPLY
@jules11

Hello Everyone. I live in Perth, Western Australia. I have posted on here before but not for a while. I was diagnosed with PMR in December last year, and put on 20mg of prednisone. I have been tapering ever since, ran into a bit of a flare when I hit 4mg. I have been on 4mg for 3 months, so feel a bit stuck. My CPR got down to 1 on 15mg, but has slowly risen to 26 while on 4mg. My doc wants me to stay on 4 for another 6 weeks, but I have decided to try 3mg then 4mg then 4mg. Just a cheeky little reduction. I just need to keep moving forward, and I feel fine, just stiffness in thighs and shoulders. Thoughts?

Jump to this post

Another site I follow, it comes from the UK is called Health Unblocked. There are lots of postings concerning PMR from people all over the world. I have found it a mine of information and that it has many helpful suggestions and guidance

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@noosat1

Another site I follow, it comes from the UK is called Health Unblocked. There are lots of postings concerning PMR from people all over the world. I have found it a mine of information and that it has many helpful suggestions and guidance

Jump to this post

I think this is the site @noosat1 is referring to: https://healthunlocked.com/polymyalgia-rheumatica

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@noosat1

I too, was diagnosed with PMR in December. I am down to 5mg, for 2 weeks, and hope to go down to 4.5 soon. I am a little apprehensive, still a lot of stiffness in legs, although twice this week I have improved walking distance. This may not be a good time to expect too much as this is the hottest month of the year, and hotter than usual, about 100 degrees F. One whole mg. seems a drastic drop for you to do at that low stage. Lots of Luck from an Aussi in the Texas hill country.

Jump to this post

Thanks for your response, yes I agree, perhaps 1 mg is too much to reduce, this morning I took 3.5mg and I will see how it goes. What is an Aussie doing in Texas? All the best with your tapering.

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@johnbishop

Hi @jules11 — I've had 2 occurrences of PMR. The first time it took me a little over 3 years to taper off of prednisone. The second occurence 6 years later, it took me 1-1/2 years to taper off of prednisone. I lived with a minor amount of aches and pains at each taper point but kept going unless the pain was really bad. It might help to keep a tapering off log and write down the dosage and the pain level so that you have something to compare with each time you drop the dosage. I started tapering by 1/2 mg when it got difficult and that seemed to help me.

Good luck!

Jump to this post

Thanks John, I am going to taper by .5 of a mg and see what happens. The doctor just seems obsessed with my CRP levels which have risen a bit, but I am coping with the tapering.

REPLY
@lindapc

Hi @jules11 I live in Wellington New Zealand and have joined this wonderful group to try to understand this condition, I have found it very helpful and it has given me emotional assurance as I got very depressed with this. I was diagnosed back in July last year and are now on 1mg. I was instructed by my Doctor to reduce 1mg per month once I got to 10mg. I did okay, like you just had a bit of stiffness in my shoulders and hips, when I got around 4mg I had to listen to my body as the stiffness was still there and I waited until I felt almost pain free before I reduced, it was normally around 6 weeks rather than 4. I am reluctant to go off the 1mg as I had a bit of a flare up when my doctor changed my blood pressure pills, Im slowly feeling better but still have days where the stiffness and pain in my shoulders is quite bad. I feel that as long as you have symptoms you have to listen to how your body is and respond when your feeling okay. I know we all want to get off this drug and go back to normal but feel is it worth the risk of a flare up and then have to go back on a higher dose. I think patience is the name of the game, good luck.

Jump to this post

Thanks so much lindapc, I am in awe of you getting down to 1 mg!! I understand your reluctance to reduce further. Has your doctor done a CPR blood test? Mine does them regularly and seems to base all decisions on this, regardless of my ability to continue to taper. Oh well … onwards!

REPLY
@noosat1

Another site I follow, it comes from the UK is called Health Unblocked. There are lots of postings concerning PMR from people all over the world. I have found it a mine of information and that it has many helpful suggestions and guidance

Jump to this post

Thanks noosat1, I will check it out … always looking for more information in our struggle with this retched thing!

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@johnbishop

Thanks John, I am going to check it out now. Much appreciated.

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@beryl

This is Beryl …..I honk what John says is a more sensible move as you do not what a flair up….

I myself have been having trouble and am on 7.5mg with methotrexate 20mg once a week folic acid also …..I am improving but as usual very slowly …..pain level is never the same as it seems it goes with how much I have done that day ……but the good thing is where I had pain up to my waist it is now from thighs and down ……th stiff back was very difficult to deal with …..

I think I would say to you don't be in too much of a hurry this thing has a mind of its own …..but we are all different …..Beryl

Jump to this post

Thanks Beryl … good advice, I just have to learn to be patient. I just hate being on the prednisone.

REPLY
@jules11

Thanks so much lindapc, I am in awe of you getting down to 1 mg!! I understand your reluctance to reduce further. Has your doctor done a CPR blood test? Mine does them regularly and seems to base all decisions on this, regardless of my ability to continue to taper. Oh well … onwards!

Jump to this post

Hello again @jules11 I have to be very pro-active with this myself, my Doctor has only taken 3 blood tests since I first had this, 1 to diagnose which showed a CPR of 49, one 1 month later which was 5 and then pretty much have been told to reduce every month or less if I felt okay, so only having visits maybe every 3 months for repeat script. I am going on holiday Saturday and will be seeing Doctor on my return, I will ask then for a blood test to see what my levels are. My personal feeling is that if I still have symptoms this condition is still hanging in there somewhere and just waiting to rear its ugly head, that's why I am concerned about dropping that last 1mg. Doctor told me when I asked if I should cut down to half or every alternate day – just stop. I really don't find it that helpful and get more from this group. My partner has just told me that there is another drug not sure if anyone has tried this but evidently good results. Etanercept is the name of the drug or I think it is called Enbrel here in New Zealand. Would be interested if anyone has tried this.

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