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

@calicojoy

I KNOW WHAT YOU MEAN WITH BEING PARALYZED WITH THE PAIN ACROSS MY SHOULDERS AND HIP GIRDLE, I COULD NOT MOVE OUT OF BED BUT WHEN THEY PUT ME ON THE PRED THE PAIN LEFT. THANK GOODNESS I HAVE HAD NONE SINCE THAT TIME BUT PROBABLY WILL SINCE I AM IN THE TAPER DOWN STAGE NOW. WITH ALL THE CRAZY STUFF THAT IS GOING ON IN THE WORLD IT IS WHAT IT IS SO I WILL DEAL WITH IT! I JUST WANT TO GET MY SENSE OF SMELL AND TASTE BACK NOW SO I CAN ENJOY MY FOOD!!

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Have you eaten pine nuts recently? In Pesto?

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@ncgal

I was finally diagnosed with PMR on April 1st of this year after being passed to 5 different doctors. First my oncologist, then he passed me to my GP who passed me to the radiologist then to the neurologist (who actually diagnosed PMR) who sent me to the rheumatologist. I started symptoms of PMR at the end of January. Each doctor did blood work but no one picked up on the very high C Reactive Protein count. I had just finished my breast cancer treatments in December and have neuropathy from the chemo treatments so think the doctors were more focused on that than anything else. Anyway, I have been put on Prednisone 10 mgs and was given a butt shot (not sure for what, maybe cortisone) at the first visit. The symptoms went away immediately from not being ab le to get out of bed without a lot of pain in arms, shoulders, legs, hips, etc. to being completely pain free. I was advised to drop a mg every two weeks so am now down to 7 mgs in a few days. So far so good. I was overweight and have lost 60 lbs since chemo which is a little too much, but since Prednisone have now started to gain a little more. I really appreciate this board as I'm learning things that were not mentioned by the doctor. I'm eating right, sleeping well, but have a hard time doing a lot of exercising as I get so fatigued so fast. Does fatigue go along with the Prednisone?

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Fatigue is one of the components of PMR. I have been dealing with PMR for over three years. I am one of the unfortunates who has not gone into remission. I am currently taking 7.5 mgs of prednisone daily and am titrating at .5 mg per month. I am still hoping for remission.

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@rachelp

Fatigue is one of the components of PMR. I have been dealing with PMR for over three years. I am one of the unfortunates who has not gone into remission. I am currently taking 7.5 mgs of prednisone daily and am titrating at .5 mg per month. I am still hoping for remission.

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Hello, Pauletta@rachelp, I really have to agree with you that fatigue is huge when you have PMR. I was diagnosed in Oct’18 and still can’t get rid of it! Was on 25 mgms Prednisone and finally, got down to 1.5…then it raised its ugly head again and I’m now back on 10 mgms. It’s in my hands and wrists as well as shoulders. Yes, still hoping for remission…or more energy! John has been very helpful, giving advice on what to read, etc. It appears that not too many people know about PMR and that makes this MC blog so very helpful. Good luck with your remission.

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@dreamer38

Hello, Pauletta@rachelp, I really have to agree with you that fatigue is huge when you have PMR. I was diagnosed in Oct’18 and still can’t get rid of it! Was on 25 mgms Prednisone and finally, got down to 1.5…then it raised its ugly head again and I’m now back on 10 mgms. It’s in my hands and wrists as well as shoulders. Yes, still hoping for remission…or more energy! John has been very helpful, giving advice on what to read, etc. It appears that not too many people know about PMR and that makes this MC blog so very helpful. Good luck with your remission.

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In reading this thread of reports, it dawned on me that it might be good to restate some of the “rules” for dealing with PMR. I put that in quotation marks BECAUSE RULE NO.1 IS THAT THERE ARE NO RULES THAT APPLY TO ALL PMR CASES. Everyone is different, but there are similarities that I have learned in my 2 years of dealing with, and researching PMR. I am not a doctor, but will share what I have learned from this forum and another larger forum in the UK.
RULE 2. Blood tests don’t always correlate with clinical symptoms. I have never had any abnormal blood tests, certainly not a hint of inflammation. That’s not unusual. Sometimes PMR will produce markers (sedimentation rate or other indication of inflammation), but up to 20% of patients never have any. A PMR diagnosis cannot be made on the basis of blood tests alone. Period.
RULE 3. PRM pain is most often in the shoulders and hips, but can appear in many other places. The key is that it is almost always bilateral, that is on both sides of your body at the same time. An injury or arthritis usually will be on one side or the other.
RULE 4. The best indication of PMR is an almost immediate relief from Prednisone (can be within an hour or up to a couple of days). Prednisone alone will not affect or cure arthritic pain or an injured muscle.
RULE 5. The disease sets the rules of tapering. Every case is different, especially in response to medication. You cannot “preset” a tapering schedule from a book. I began on 40 mg of Prednisone, a friend on 50. The Europeans do not recommend anything over 30 unless you have GCA. The point is to knock out the pain and then taper SLOWLY until it returns. I went a year in gradual taper until I hit a relapse at 3 mg. Bumped back up to 10, now am back to 2 mg and am doing well. I am lucky. Many of us never get off Pred, and many require years. It does appear that the ones with the most success taper very slowly and deal with the effects of Pred rather that the pain of PMR. Dropping by half a mg once you are inside ten mg per day should be considered. Precipitous drops from, say 10 to 5, often do not work. Again the goal is to take the lowest dose that controls the disease.
RULE 6. PMR is not well known to many doctors. It’s not rare, but unless you’re in the hands of a good rheumatologist your doctor may be unfamiliar with all of the variables involved with PMR. (The Mayo website is a good place for them to start).

I hope this is helpful to readers. I can supply a link to a website dealing with “slow tapering” if anyone wants it. See healthunlocked.com/Pmrgcauk or steroidtaper.azurewebsites or steroidtaper.com.

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@pfafpa

In reading this thread of reports, it dawned on me that it might be good to restate some of the “rules” for dealing with PMR. I put that in quotation marks BECAUSE RULE NO.1 IS THAT THERE ARE NO RULES THAT APPLY TO ALL PMR CASES. Everyone is different, but there are similarities that I have learned in my 2 years of dealing with, and researching PMR. I am not a doctor, but will share what I have learned from this forum and another larger forum in the UK.
RULE 2. Blood tests don’t always correlate with clinical symptoms. I have never had any abnormal blood tests, certainly not a hint of inflammation. That’s not unusual. Sometimes PMR will produce markers (sedimentation rate or other indication of inflammation), but up to 20% of patients never have any. A PMR diagnosis cannot be made on the basis of blood tests alone. Period.
RULE 3. PRM pain is most often in the shoulders and hips, but can appear in many other places. The key is that it is almost always bilateral, that is on both sides of your body at the same time. An injury or arthritis usually will be on one side or the other.
RULE 4. The best indication of PMR is an almost immediate relief from Prednisone (can be within an hour or up to a couple of days). Prednisone alone will not affect or cure arthritic pain or an injured muscle.
RULE 5. The disease sets the rules of tapering. Every case is different, especially in response to medication. You cannot “preset” a tapering schedule from a book. I began on 40 mg of Prednisone, a friend on 50. The Europeans do not recommend anything over 30 unless you have GCA. The point is to knock out the pain and then taper SLOWLY until it returns. I went a year in gradual taper until I hit a relapse at 3 mg. Bumped back up to 10, now am back to 2 mg and am doing well. I am lucky. Many of us never get off Pred, and many require years. It does appear that the ones with the most success taper very slowly and deal with the effects of Pred rather that the pain of PMR. Dropping by half a mg once you are inside ten mg per day should be considered. Precipitous drops from, say 10 to 5, often do not work. Again the goal is to take the lowest dose that controls the disease.
RULE 6. PMR is not well known to many doctors. It’s not rare, but unless you’re in the hands of a good rheumatologist your doctor may be unfamiliar with all of the variables involved with PMR. (The Mayo website is a good place for them to start).

I hope this is helpful to readers. I can supply a link to a website dealing with “slow tapering” if anyone wants it. See healthunlocked.com/Pmrgcauk or steroidtaper.azurewebsites or steroidtaper.com.

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Thankyou, this was helpful.

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@pfafpa

In reading this thread of reports, it dawned on me that it might be good to restate some of the “rules” for dealing with PMR. I put that in quotation marks BECAUSE RULE NO.1 IS THAT THERE ARE NO RULES THAT APPLY TO ALL PMR CASES. Everyone is different, but there are similarities that I have learned in my 2 years of dealing with, and researching PMR. I am not a doctor, but will share what I have learned from this forum and another larger forum in the UK.
RULE 2. Blood tests don’t always correlate with clinical symptoms. I have never had any abnormal blood tests, certainly not a hint of inflammation. That’s not unusual. Sometimes PMR will produce markers (sedimentation rate or other indication of inflammation), but up to 20% of patients never have any. A PMR diagnosis cannot be made on the basis of blood tests alone. Period.
RULE 3. PRM pain is most often in the shoulders and hips, but can appear in many other places. The key is that it is almost always bilateral, that is on both sides of your body at the same time. An injury or arthritis usually will be on one side or the other.
RULE 4. The best indication of PMR is an almost immediate relief from Prednisone (can be within an hour or up to a couple of days). Prednisone alone will not affect or cure arthritic pain or an injured muscle.
RULE 5. The disease sets the rules of tapering. Every case is different, especially in response to medication. You cannot “preset” a tapering schedule from a book. I began on 40 mg of Prednisone, a friend on 50. The Europeans do not recommend anything over 30 unless you have GCA. The point is to knock out the pain and then taper SLOWLY until it returns. I went a year in gradual taper until I hit a relapse at 3 mg. Bumped back up to 10, now am back to 2 mg and am doing well. I am lucky. Many of us never get off Pred, and many require years. It does appear that the ones with the most success taper very slowly and deal with the effects of Pred rather that the pain of PMR. Dropping by half a mg once you are inside ten mg per day should be considered. Precipitous drops from, say 10 to 5, often do not work. Again the goal is to take the lowest dose that controls the disease.
RULE 6. PMR is not well known to many doctors. It’s not rare, but unless you’re in the hands of a good rheumatologist your doctor may be unfamiliar with all of the variables involved with PMR. (The Mayo website is a good place for them to start).

I hope this is helpful to readers. I can supply a link to a website dealing with “slow tapering” if anyone wants it. See healthunlocked.com/Pmrgcauk or steroidtaper.azurewebsites or steroidtaper.com.

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Re. Rule 3…I am currently tapering and had to increase from 7 to 10 mgs. due to increased discomfort (below waist and above knees) and especially pain in my thighs, but honestly it's primarily in my left thigh. I don't believe it can be anything other than my PMR (such as a strain), but I'm concerned now based on your comment about it being bilateral. Comments?

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@kmeikle1

Re. Rule 3…I am currently tapering and had to increase from 7 to 10 mgs. due to increased discomfort (below waist and above knees) and especially pain in my thighs, but honestly it's primarily in my left thigh. I don't believe it can be anything other than my PMR (such as a strain), but I'm concerned now based on your comment about it being bilateral. Comments?

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@kmeikle1, Excerpt from article below — "Symptoms may include muscle pain (myalgia) and stiffness in the neck, shoulders, upper arms, lower back, hips, and/or thighs."

National Organization for Rare Disorders (NORD) – Polymyalgia Rheumatica:
https://rarediseases.org/rare-diseases/polymyalgia-rheumatica/

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@kmeikle1

Re. Rule 3…I am currently tapering and had to increase from 7 to 10 mgs. due to increased discomfort (below waist and above knees) and especially pain in my thighs, but honestly it's primarily in my left thigh. I don't believe it can be anything other than my PMR (such as a strain), but I'm concerned now based on your comment about it being bilateral. Comments?

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I am also tapering down from 15 mg 18 months ago to 1 mg present, and my symptoms have been exactly same as yours. Between waist and knees, and left thigh definitely more troublesome.

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@pfafpa

In reading this thread of reports, it dawned on me that it might be good to restate some of the “rules” for dealing with PMR. I put that in quotation marks BECAUSE RULE NO.1 IS THAT THERE ARE NO RULES THAT APPLY TO ALL PMR CASES. Everyone is different, but there are similarities that I have learned in my 2 years of dealing with, and researching PMR. I am not a doctor, but will share what I have learned from this forum and another larger forum in the UK.
RULE 2. Blood tests don’t always correlate with clinical symptoms. I have never had any abnormal blood tests, certainly not a hint of inflammation. That’s not unusual. Sometimes PMR will produce markers (sedimentation rate or other indication of inflammation), but up to 20% of patients never have any. A PMR diagnosis cannot be made on the basis of blood tests alone. Period.
RULE 3. PRM pain is most often in the shoulders and hips, but can appear in many other places. The key is that it is almost always bilateral, that is on both sides of your body at the same time. An injury or arthritis usually will be on one side or the other.
RULE 4. The best indication of PMR is an almost immediate relief from Prednisone (can be within an hour or up to a couple of days). Prednisone alone will not affect or cure arthritic pain or an injured muscle.
RULE 5. The disease sets the rules of tapering. Every case is different, especially in response to medication. You cannot “preset” a tapering schedule from a book. I began on 40 mg of Prednisone, a friend on 50. The Europeans do not recommend anything over 30 unless you have GCA. The point is to knock out the pain and then taper SLOWLY until it returns. I went a year in gradual taper until I hit a relapse at 3 mg. Bumped back up to 10, now am back to 2 mg and am doing well. I am lucky. Many of us never get off Pred, and many require years. It does appear that the ones with the most success taper very slowly and deal with the effects of Pred rather that the pain of PMR. Dropping by half a mg once you are inside ten mg per day should be considered. Precipitous drops from, say 10 to 5, often do not work. Again the goal is to take the lowest dose that controls the disease.
RULE 6. PMR is not well known to many doctors. It’s not rare, but unless you’re in the hands of a good rheumatologist your doctor may be unfamiliar with all of the variables involved with PMR. (The Mayo website is a good place for them to start).

I hope this is helpful to readers. I can supply a link to a website dealing with “slow tapering” if anyone wants it. See healthunlocked.com/Pmrgcauk or steroidtaper.azurewebsites or steroidtaper.com.

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Thanks for the information. I don't think it has been mentioned about the time limit on a certain mg. before stepping down a dose. For instance, I started on 10 mgs. and was told to step down after two weeks. I am now on 6 mgs and have had no trouble so far. Is this two week between mgs. the normal time or is it different with each person?

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@ncgal

Thanks for the information. I don't think it has been mentioned about the time limit on a certain mg. before stepping down a dose. For instance, I started on 10 mgs. and was told to step down after two weeks. I am now on 6 mgs and have had no trouble so far. Is this two week between mgs. the normal time or is it different with each person?

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@ncgal, I don't think there is specific tapering schedule. Each person is affected differently with their pain differences for PMR. Your rheumatologist can provide/suggest some tapering schedules but I don't believe anything is set in concrete. My first occurrence of PMR lasted about 3 years before I was able to taper off of prednisone. I started with 20 mg dosage and the last six months I went back and forth between 1 mg and 1/2 mg dosage until I was finally able to taper off. Sometimes I did it on a weekly taper and other times I did it on a 2 to 3 day taper schedule. It really amounted to how much pain I was willing to tolerate. I would keep a daily log on the dosage and your level of pain or how you feel. That really helped me when I was tapering off of prednisone.

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@johnbishop

@kmeikle1, Excerpt from article below — "Symptoms may include muscle pain (myalgia) and stiffness in the neck, shoulders, upper arms, lower back, hips, and/or thighs."

National Organization for Rare Disorders (NORD) – Polymyalgia Rheumatica:
https://rarediseases.org/rare-diseases/polymyalgia-rheumatica/

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Thanks John. What I was curious about was the pain being much more predominant in one thigh vs bilateral

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@heretaunga1947

I am also tapering down from 15 mg 18 months ago to 1 mg present, and my symptoms have been exactly same as yours. Between waist and knees, and left thigh definitely more troublesome.

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I'm discouraged because it took a lot for me to get from 15 mgs to 7 mgs and now I went back up to 10. So you just kept working through to get lower on prednisone even with pain and discomfort? Thanks for sharing…it helps to know I'm not alone.

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@kmeikle1

I'm discouraged because it took a lot for me to get from 15 mgs to 7 mgs and now I went back up to 10. So you just kept working through to get lower on prednisone even with pain and discomfort? Thanks for sharing…it helps to know I'm not alone.

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You are definitely not alone. I must admit I was complacent and happy to live in relative comfort at first with about 10 mg but then the Covid and with the affect of the prednisone on the immune system, and at same time finding out I had shot up into the pre diabetic state made me make a big effort and like you say, just keeping on working through now. Our local pool is opening up again so I am going back as I found aqua jogging is very good in getting those thigh muscles working, doing things I can't normally do. Hope things start to go better for you.

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Thanks for all comments in last 2 days. I am currently on bout 3 of PMR, down to 7 mg and really taking my time. The first time I had PMR (16 years ago), my then rheumatologist told me I was at high risk for tendonititis and to avoid heavy weights. That time, I did get tendinitis twice and they were both one-sided. Treated one with acupuncture, one with PT. They were secondary to PMR. He also told me to do as much range of motion as I could, so I do. I have a tendency to want to try to get off prednisone too fast. The first time I had PMR, it took me two years to get off prednisone and I didn’t have a relapse for about 10+ years. The second time, I got off in 10 months, but the PMR recurred 8 months later. I plan to decrease now by 1/2 mg a month or even less. I have seen some of the UK sites as well. Sometimes, I use a small dose of ibuprofen or Tylenol when I am decreasing and have some pain. The first time I had it, I was working for an endocrinologist and I asked him about the difficulty I was have decreasing the dose. He said it may be because after a period of time, you have to wait for your body to begin producing it’s own cortisol. It is a strange disease. I have moved and have a new young rheumatologist. She admits she doesn’t have all the answers and i like that she listens to me. The first time I had PMR, the pressures went up in my eyes and I became a glaucoma risk. They went down after I was off prednisone, I have an eye appt. in 2 weeks, so will see if that is a problem again. Hang in there everyone.

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@heretaunga1947

You are definitely not alone. I must admit I was complacent and happy to live in relative comfort at first with about 10 mg but then the Covid and with the affect of the prednisone on the immune system, and at same time finding out I had shot up into the pre diabetic state made me make a big effort and like you say, just keeping on working through now. Our local pool is opening up again so I am going back as I found aqua jogging is very good in getting those thigh muscles working, doing things I can't normally do. Hope things start to go better for you.

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It is such a comfort to hear everyones stories. It is what truly makes me feel not alone in this. Not many people really understand what we go through, and how the pain affects our emotional well being . I started 20 mg prednisone 2 years ago . It has been an up and down battle to get as low as 4mg. Then the pain came back full force. I went up to 10mg for 4 days to try and reset. Im now at 7mg because I was in too much pain going back to 4. A person has to be so strategic! There are no rules to follow, so you have to listen to your body and try to adjust medications to bring yourself to a good quality of life. I still have pain, in my shoulders and hips, but use Tylonal when it is bad. Good luck everyone! our experiences with PMR can be so different from eachother, that the more stories we read, the more often we find one that is just like our own, and it is comforting.

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