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

@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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Yes that is true it goes dormant for how long well that depends on our bodies. Everybody that has or have had PMR are different I think our metabolism are all different some people put on weight because of the prednisone & then there is the pain. Now listening to all who are on the Mayo support group all are different except of the joint pains. I consider myself very lucky I’ll tell you why I am 76 I am 5’7′ tall, I have had PMR since Feb or March of 2017. I started on 20 mg of Pred. now down to 7.5 mg/day. I have never put on weight which is strange, I also am an avid gym person maybe it has something to do with it. I do take 5000 mg of D3/day of course at my age I am on BP medication I am also a celiac intolerance person I have been for 16 years but doing well with it. Like I said at the beginning there are no 2 cases alike. As far as weaning off the Pred. take it slowly even if you do not feel any pain that doesn’t mean that you can drop a mg or 2. Myself as I said I am on 7.5 mg/day. Now I will attempt to drop another mg or so at the beginning of Feb. if it works good but if it doesn’t I will increase my body will tell me if I am ready to decrease my Pred. Also I have not had any reactions to the Pred. so I do have an advantage over most but I also have to be careful. Mostly exercise is very important & I mean real exercise my down hill skiing has not bothered me at all. Good luck to all who have to cope with this annoying auto. disease.

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@johnbishop

Hello @charlena, my symptoms are shoulder and arm pain/tingling. I’m a side sleeper and was waking in the middle of the night with my hands and arms feeling like they were asleep with numbness/tingling. The shoulder joints were painful but hard for me to describe how much pain. This started in August 2016 when my polymyalgia rheumatica came out of remission. The first diagnosis of PMR was in January 2007. I was put on 20 mg prednisone for both times. Also, I had hip pain along with the arm and shoulder pain/stiffness for the first bout of PMR.

I was able to taper down to 7 mg dosage by July 2007 but it took me until July 2010 to totally taper off of prednisone the first time. I had went back up to 10 mg by March 2009 and the rheumatologist had me taper 1 mg a week and if the pain came back I would go back up 1 mg for 3 days then drop again. From Jan 2010 to Jul 2010 I was going from 1 mg to 1/2 mg up and down until the symptoms went away July 17, 2010. It was hard for me to believe that 1/2 mg could make that much difference but it did. I also did not like splitting the 1 mg tablets. Now I’m having the same difficulty tapering off prednisone for this second PMR flare up.

@charelena did your husband see a rheumatologist or was is your primary care doctor? If not a rheumatologist, I think it would be a good idea to see a rheumatologist since they would have more experience with this condition.

Good luck – your husband is lucky to have you for an advocate. Keep asking questions of the doctors. The more you can learn, the better questions you can ask and hopefully the better care you can get for your husband.

John

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Well tingling in hands & arms are normal for older people why I don’t know but my Dr. said it is common as long as it goes away when changing sleeping positions so no need to worry about it & it is not PMR related.

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@johnbishop

Hello @charlena, my symptoms are shoulder and arm pain/tingling. I’m a side sleeper and was waking in the middle of the night with my hands and arms feeling like they were asleep with numbness/tingling. The shoulder joints were painful but hard for me to describe how much pain. This started in August 2016 when my polymyalgia rheumatica came out of remission. The first diagnosis of PMR was in January 2007. I was put on 20 mg prednisone for both times. Also, I had hip pain along with the arm and shoulder pain/stiffness for the first bout of PMR.

I was able to taper down to 7 mg dosage by July 2007 but it took me until July 2010 to totally taper off of prednisone the first time. I had went back up to 10 mg by March 2009 and the rheumatologist had me taper 1 mg a week and if the pain came back I would go back up 1 mg for 3 days then drop again. From Jan 2010 to Jul 2010 I was going from 1 mg to 1/2 mg up and down until the symptoms went away July 17, 2010. It was hard for me to believe that 1/2 mg could make that much difference but it did. I also did not like splitting the 1 mg tablets. Now I’m having the same difficulty tapering off prednisone for this second PMR flare up.

@charelena did your husband see a rheumatologist or was is your primary care doctor? If not a rheumatologist, I think it would be a good idea to see a rheumatologist since they would have more experience with this condition.

Good luck – your husband is lucky to have you for an advocate. Keep asking questions of the doctors. The more you can learn, the better questions you can ask and hopefully the better care you can get for your husband.

John

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Thanks @lioness – I normally am a side sleeper and have to use a pillow, can’t sleep on my back. I do try to make sure I keep my arm and hands not under the pillow … which like you say gives you some pins and needles.

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@johnbishop

Hello @charlena, my symptoms are shoulder and arm pain/tingling. I’m a side sleeper and was waking in the middle of the night with my hands and arms feeling like they were asleep with numbness/tingling. The shoulder joints were painful but hard for me to describe how much pain. This started in August 2016 when my polymyalgia rheumatica came out of remission. The first diagnosis of PMR was in January 2007. I was put on 20 mg prednisone for both times. Also, I had hip pain along with the arm and shoulder pain/stiffness for the first bout of PMR.

I was able to taper down to 7 mg dosage by July 2007 but it took me until July 2010 to totally taper off of prednisone the first time. I had went back up to 10 mg by March 2009 and the rheumatologist had me taper 1 mg a week and if the pain came back I would go back up 1 mg for 3 days then drop again. From Jan 2010 to Jul 2010 I was going from 1 mg to 1/2 mg up and down until the symptoms went away July 17, 2010. It was hard for me to believe that 1/2 mg could make that much difference but it did. I also did not like splitting the 1 mg tablets. Now I’m having the same difficulty tapering off prednisone for this second PMR flare up.

@charelena did your husband see a rheumatologist or was is your primary care doctor? If not a rheumatologist, I think it would be a good idea to see a rheumatologist since they would have more experience with this condition.

Good luck – your husband is lucky to have you for an advocate. Keep asking questions of the doctors. The more you can learn, the better questions you can ask and hopefully the better care you can get for your husband.

John

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Hi Peach @peach414144, I’ve forgotten what it feels like to not have stiffness when I wake up. ☺ That’s really the reason I try to ride my exercise bike for 30 minutes when I first get up in the morning…it loosens up the joints. Of course I have to feed the pets first or would have to listen to some aggravating noises until I stopped and fed them.

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@johnbishop

Hello @charlena, my symptoms are shoulder and arm pain/tingling. I’m a side sleeper and was waking in the middle of the night with my hands and arms feeling like they were asleep with numbness/tingling. The shoulder joints were painful but hard for me to describe how much pain. This started in August 2016 when my polymyalgia rheumatica came out of remission. The first diagnosis of PMR was in January 2007. I was put on 20 mg prednisone for both times. Also, I had hip pain along with the arm and shoulder pain/stiffness for the first bout of PMR.

I was able to taper down to 7 mg dosage by July 2007 but it took me until July 2010 to totally taper off of prednisone the first time. I had went back up to 10 mg by March 2009 and the rheumatologist had me taper 1 mg a week and if the pain came back I would go back up 1 mg for 3 days then drop again. From Jan 2010 to Jul 2010 I was going from 1 mg to 1/2 mg up and down until the symptoms went away July 17, 2010. It was hard for me to believe that 1/2 mg could make that much difference but it did. I also did not like splitting the 1 mg tablets. Now I’m having the same difficulty tapering off prednisone for this second PMR flare up.

@charelena did your husband see a rheumatologist or was is your primary care doctor? If not a rheumatologist, I think it would be a good idea to see a rheumatologist since they would have more experience with this condition.

Good luck – your husband is lucky to have you for an advocate. Keep asking questions of the doctors. The more you can learn, the better questions you can ask and hopefully the better care you can get for your husband.

John

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yes, i think the animals keep us going. on. the responsibility for them gives us another reason to enjoy life for them and for us. (2 cats and 2 dog)

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@johnbishop

Hello @charlena, my symptoms are shoulder and arm pain/tingling. I’m a side sleeper and was waking in the middle of the night with my hands and arms feeling like they were asleep with numbness/tingling. The shoulder joints were painful but hard for me to describe how much pain. This started in August 2016 when my polymyalgia rheumatica came out of remission. The first diagnosis of PMR was in January 2007. I was put on 20 mg prednisone for both times. Also, I had hip pain along with the arm and shoulder pain/stiffness for the first bout of PMR.

I was able to taper down to 7 mg dosage by July 2007 but it took me until July 2010 to totally taper off of prednisone the first time. I had went back up to 10 mg by March 2009 and the rheumatologist had me taper 1 mg a week and if the pain came back I would go back up 1 mg for 3 days then drop again. From Jan 2010 to Jul 2010 I was going from 1 mg to 1/2 mg up and down until the symptoms went away July 17, 2010. It was hard for me to believe that 1/2 mg could make that much difference but it did. I also did not like splitting the 1 mg tablets. Now I’m having the same difficulty tapering off prednisone for this second PMR flare up.

@charelena did your husband see a rheumatologist or was is your primary care doctor? If not a rheumatologist, I think it would be a good idea to see a rheumatologist since they would have more experience with this condition.

Good luck – your husband is lucky to have you for an advocate. Keep asking questions of the doctors. The more you can learn, the better questions you can ask and hopefully the better care you can get for your husband.

John

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Hi John I sleep on my side but use a small pillow .Almost like a rolled up towel

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@johnbishop

Hello @barbararene, welcome to Mayo Connect. I also have PMR. The first time I was diagnosed with PMR was put on 20 mg of prednisone. It took me well over a year to titrate off of prednisone going back and forth between 1 mg to 1/2 mg before I was finally able to get off of it. My PMR has been in remission until this past August and I was put back on 20 mg of prednisone. My doctor put me on a 21 week titration schedule to get off of it and I’m now on week 23 and going back and forth between 10 and 7.5 mg of prednisone. I have been as low as 5 mg but the pain was bothersome. I have a doctors appointment next week and am planning to discuss a different titration schedule. I think the first time it was trying to reduce the dosage every 3 days instead of every week. I can deal with a little pain but didn’t want it to get out of hand. I don’t use any alcohol as it has negative effects on my small fiber peripheral neuropathy.

Are you able to split the 5 mg pills to go from 10 to 7.5 mg? I think that’s how I was finally able to get off the first go round with my PMR.

Hoping your PMR goes into remission so that you can stop taking the prednisone.

John

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I was just diagnosed wiht PMR after a month of feeling just terrible. My ana levels are elevated and sed rate. It stared with strep throat and I thought I had the flu after that. My doctor is starting me on a low dose of prednisone (5 m) because I had a bad reaction when I took it years ago for a bad case of poison ivy. I have SVT and it sent my heart out of sync. I’m afraid to take it but from what I’ve been reading, it really seems to make a difference. I will probably begin tomorrow. The nights are the worst for me. After last night, I told myself the low dose might be worth a try. I was also told I could take Tylenol and that does help me during the day. Thanks for sharing your story. It helps to know I’m not alone in this. LB

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@johnbishop

Hello @barbararene, welcome to Mayo Connect. I also have PMR. The first time I was diagnosed with PMR was put on 20 mg of prednisone. It took me well over a year to titrate off of prednisone going back and forth between 1 mg to 1/2 mg before I was finally able to get off of it. My PMR has been in remission until this past August and I was put back on 20 mg of prednisone. My doctor put me on a 21 week titration schedule to get off of it and I’m now on week 23 and going back and forth between 10 and 7.5 mg of prednisone. I have been as low as 5 mg but the pain was bothersome. I have a doctors appointment next week and am planning to discuss a different titration schedule. I think the first time it was trying to reduce the dosage every 3 days instead of every week. I can deal with a little pain but didn’t want it to get out of hand. I don’t use any alcohol as it has negative effects on my small fiber peripheral neuropathy.

Are you able to split the 5 mg pills to go from 10 to 7.5 mg? I think that’s how I was finally able to get off the first go round with my PMR.

Hoping your PMR goes into remission so that you can stop taking the prednisone.

John

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Hi @mymolly57, welcome to Mayo Connect. We are glad you found us. May I ask how high of a dose of prednisone triggered your supraventricular tachycardia (SVT) event when treated for poison ivy? It’s good that you discussed it with your doctor and the doctor is starting on a low dose of prednisone. Mayo Clinic has some good information on polymyalgia rheumatica (PMR) on their website below. The page also has a section on Lifestyle and home remedies that may be helpful:

https://www.mayoclinic.org/diseases-conditions/polymyalgia-rheumatica/diagnosis-treatment/drc-20376545

John

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I was on prednisone for ten months after being diagnosed with PMR. After being weened off of the prednisone, I felt ok for a short time. My symptoms have returned with some added problems. Pain around “the pelvic girdle” is debilitating. I am unable to walk and the fatigue is limiting my normal life. The prednisone may have been a magic medicine but I am more concerned with the dangerous side effects such as bone weakening and skin thinning. I do take pain medication when I must but life as I knew it has completely changed.

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So sorry to hear this ,it’s a steroid and hard on your kidneys ,liver I’m sorry Dr had you on that long?

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@helpforpmr

I was on prednisone for ten months after being diagnosed with PMR. After being weened off of the prednisone, I felt ok for a short time. My symptoms have returned with some added problems. Pain around “the pelvic girdle” is debilitating. I am unable to walk and the fatigue is limiting my normal life. The prednisone may have been a magic medicine but I am more concerned with the dangerous side effects such as bone weakening and skin thinning. I do take pain medication when I must but life as I knew it has completely changed.

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Unfortunately, I think being on prednisone for at least a year is pretty standard (if you count the months it takes to wean off). I have an identical situation. I was a healthy 70 yr. old. Never sick and very active my entire life. All of a sudden, my hip flexors started hurting and I couldn’t lift my arms to do arm circles. I was diagnosed with PMR the end of 2016. My RA put me on 15 mg of prednisone. I told her how I feared being on prednisone. She replied, “You don’t have to go on prednisone, but promise me that if you start losing sight in one of your eyes, you will come to see me.” She went on to tell me about the chances of getting GCA (giant cell arteritis). To me, there really wasn’t a choice and, from everything I read, if you want any kind of your life back, prednisone is the only thing that will work ! And it DID work like a miracle !!! I like my RA. She understands where I come from. She “weaned” me off gradually from the steroid (took a year) and after a while, the pain has returned. She told me that if you try to wean off too fast, the PMR may most probably return. Gradually, I have developed pain in my quads, hamstrings, and even knee “pits”. I was practically crawling to the bathroom. I went in for my follow up and she said my inflammation markers were up (Sed rate 66; CRP 18.4). She said it was unusual for the PMR to affect my knee area. But, my entire hip girdle is affected like you. She has raised me back up to 5 mg (I was down to 1). She said that was low dose and less likely to have side effects. Truthfully, I don’t know if that’s going to do the trick. I’m a swimmer and love yoga – hard for me to do either now. She wants to see me in 3 weeks and if I’m no better, I know she’s going to want to raise me back up to 15. I’m to the point I’m going to seek some alternative therapy. I so want my life back. A friend keeps telling me … you have to keep those negative thoughts from reaching your brain. She said that really makes a difference. And, I’m confused reading & talking to people about all the anti-inflammatory diets. Do they even work? I want to be able to walk again, not hobble … without the help of a dangerous drug. P.S. Speaking of bone weakening … the next thing she wants me on is a bone strengthening med … you know the drill, take one med for your condition and one med to counteract the side-effects of the first med. And so it goes.

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@helpforpmr

I was on prednisone for ten months after being diagnosed with PMR. After being weened off of the prednisone, I felt ok for a short time. My symptoms have returned with some added problems. Pain around “the pelvic girdle” is debilitating. I am unable to walk and the fatigue is limiting my normal life. The prednisone may have been a magic medicine but I am more concerned with the dangerous side effects such as bone weakening and skin thinning. I do take pain medication when I must but life as I knew it has completely changed.

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I, too will be seeking alternative treatments. My first venture into this is an appointment with a nutritionist who is recommended by my primary physician. My primary and I are in agreement as to the avoidance of taking prednisone. In reading another post, I see that one person has been successful with physical exercise. I wish I could do that but because of the pain it augments it is impossible. After working with a physical therapist for six months, it appears that this was not helpful. On days I was feeling a bit better, the therapy had good results but on the days I could hardly move, the therapy was more painful and had no good result. I do find that therapeutic massage by an accredited masseuse is helpful but the relief is short-lived. I do it anyway every other week and look forward to it.
The last two weeks have been especially challenging as I have developed a rash all over my body. Much of it itches terribly. Saw the dermatologist, gynecologist, rheumatologist and my primary. All had different takes on the issue. None have a clue as to whether it is associated with the PMR. Since dealing with the rash, the PMR pains have gotten much worse. The gynecologist diagnosed a UTI which a few days later, after going on strong antibiotic, was proven negative by culture.
I try to keep negative thoughts at bay but it is very difficult. Looking for a pre eminent physician anywhere who will take me on.
Good luck to all of us.

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@helpforpmr

I was on prednisone for ten months after being diagnosed with PMR. After being weened off of the prednisone, I felt ok for a short time. My symptoms have returned with some added problems. Pain around “the pelvic girdle” is debilitating. I am unable to walk and the fatigue is limiting my normal life. The prednisone may have been a magic medicine but I am more concerned with the dangerous side effects such as bone weakening and skin thinning. I do take pain medication when I must but life as I knew it has completely changed.

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I was on prednisone for 3 years for the first episode of my PMR. It went into remission for 6 years and I’ve currently been on it for a year and half but will be at 1 mg hopefully next week and off of it in another month – all things being equal. I do take CoQ10 (Qunol), collagen and calcium to hopefully help with the thin bones,etc.. My doctor suggested I add 1200 mg calcium to help with the osteopenia. I do believe exercise is key but I also think diet play a huge part in dealing with a lot of the autoimmune diseases. I was convinced when I read Dr. Terry Wahls story on how she got rid of most of the debilitating symptoms of MS using nutrition at the cellular level. It’s worth a quick read if you don’t know who she is: https://terrywahls.com/about/about-terry-wahls/

It has helped me control the weight gain this second time around with the PMR.

Hoping for a pain free weekend (and more!) for all my PMR friends.

John

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@helpforpmr

I was on prednisone for ten months after being diagnosed with PMR. After being weened off of the prednisone, I felt ok for a short time. My symptoms have returned with some added problems. Pain around “the pelvic girdle” is debilitating. I am unable to walk and the fatigue is limiting my normal life. The prednisone may have been a magic medicine but I am more concerned with the dangerous side effects such as bone weakening and skin thinning. I do take pain medication when I must but life as I knew it has completely changed.

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Seems like we have a LOT in common. When I first came down with my initial pain, I tried to do physical therapy for my shoulders (prior to going on prednisone) but it hurt too much – no range of motion ! Ended up getting a cortisone shot in one shoulder and that helped tremendously (also a steroid). Then, I went back to physical therapy for about 6 weeks and felt better. But, I don’t feel that the physical therapy was the reason – it was the shot in my shoulder ! I did get the rash recently, on my lower back. It was short lived but comes back from time to time. Same thing to with massage therapy – it helps until I get home and my pain returns. I, too, am thinking of talking to a nutritionist. I can’t slog through this diet without advice from someone. I want to keep myself healthy and not miss out on any nutrients that are essential. In the meantime, I’m on 5 mg of prednisone … hopefully, this “maintenance” will allow me to swim, etc. I seem to improve with activity. Then, each morning the routine starts all over again.

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I would like to know how many others have had a mysterious rash.

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