Thanks for checking in John. I reduced the Prednisone by 2.5 mg two weeks ago so down from 20 mg to 17.5 mg. The plan is to drop another 2.5 mg every month for the next three months so by mid-October I’ll be at 10 mg and will reduce .5 to 1 mg monthly from there forward and adjust as necessary. I’ve been able to live my life as normal as possible and have been averaging 7 - 8 miles a day hiking north of Tucson so no leg issues. I have noticed if I do a lot of things with my hands, especially if I’ve had a busy day where I’m overly exhausted, my hands will cramp up and my fingers will involuntarily point in different directions. Very weird! Also on my sides about chest high I have lots of little round flat blood blisters under the skin. They aren’t raised just looks like red dots. Anyway maybe that’s a function of the Prednisone. Oh well, life’s good at 70!
@drtiminaz, It sounds like you have a pretty good plan for tapering off of prednisone and it's going well. I've had the hand cramps but mine are more associated with my carpal tunnel I think. I've not seen the small blisters you are describing but do believe you may be correct about being a side effect of the prednisone. Maybe other members can share their experience. I did find an article that talks about it.
Excerpt from article linked below -- "Long-term use of strong steroids can cause widespread purpura and bruising, normally on extensor surfaces of the hands, arms and thighs. It is caused by atrophy of the collagen fibres supporting blood vessels in the skin. A similar appearance is also found in senile-type purpura."
-- Purpuric Rashes: https://patient.info/doctor/purpuric-rashes
Have you mentioned the symptoms to your primary care doctor? It might be a good idea just to discuss the symptoms with a doctor or pharmacist.
@drtiminaz, It sounds like you have a pretty good plan for tapering off of prednisone and it's going well. I've had the hand cramps but mine are more associated with my carpal tunnel I think. I've not seen the small blisters you are describing but do believe you may be correct about being a side effect of the prednisone. Maybe other members can share their experience. I did find an article that talks about it.
Excerpt from article linked below -- "Long-term use of strong steroids can cause widespread purpura and bruising, normally on extensor surfaces of the hands, arms and thighs. It is caused by atrophy of the collagen fibres supporting blood vessels in the skin. A similar appearance is also found in senile-type purpura."
-- Purpuric Rashes: https://patient.info/doctor/purpuric-rashes
Have you mentioned the symptoms to your primary care doctor? It might be a good idea just to discuss the symptoms with a doctor or pharmacist.
Thanks John! I just found a couple of articles too that describe the same “Small Reddish-Purplish Pin-Point Sized Spots On Skin” as a side effect of Prednisone. I’ll see my primary care in a couple of weeks and mention it to him. Thanks again!
Thanks for checking in John. I reduced the Prednisone by 2.5 mg two weeks ago so down from 20 mg to 17.5 mg. The plan is to drop another 2.5 mg every month for the next three months so by mid-October I’ll be at 10 mg and will reduce .5 to 1 mg monthly from there forward and adjust as necessary. I’ve been able to live my life as normal as possible and have been averaging 7 - 8 miles a day hiking north of Tucson so no leg issues. I have noticed if I do a lot of things with my hands, especially if I’ve had a busy day where I’m overly exhausted, my hands will cramp up and my fingers will involuntarily point in different directions. Very weird! Also on my sides about chest high I have lots of little round flat blood blisters under the skin. They aren’t raised just looks like red dots. Anyway maybe that’s a function of the Prednisone. Oh well, life’s good at 70!
Dr. Tim, a few thoughts from a similar PMR sufferer: I just turned 72 and like you, continue to walk and play golf quite a bit (I’m
In Phoenix). The key for taking Prednisone is to NOT have a preset tapering schedule. The disease sets the schedule. Your goal is to take the least amount that fully voids all of your PMR related pain. We are all different and cannot predict in advance when to taper; rather taper slowly when you are feeling good and see if it works. You want to avoid flares if possible. No one wants to be on Prednisone, but it sure beats PMR pain, so go slow. On the positive side, no one wants PMR either, but it sure beats most other autoimmune diseases so in that sense we can count our blessings!
Dr. Tim, a few thoughts from a similar PMR sufferer: I just turned 72 and like you, continue to walk and play golf quite a bit (I’m
In Phoenix). The key for taking Prednisone is to NOT have a preset tapering schedule. The disease sets the schedule. Your goal is to take the least amount that fully voids all of your PMR related pain. We are all different and cannot predict in advance when to taper; rather taper slowly when you are feeling good and see if it works. You want to avoid flares if possible. No one wants to be on Prednisone, but it sure beats PMR pain, so go slow. On the positive side, no one wants PMR either, but it sure beats most other autoimmune diseases so in that sense we can count our blessings!
Thanks for the advice Pfafpa! Be safe in the Phoenix sun! I’ve been able to get at least 6 miles in hiking each day
North of Tucson. Usually it’s mid-90s by the time I get done and every two miles at someone’s hose bib I soak my long sleeve shirt, do-rag, boonie hat and chamois rag I wear under my shirt around my shoulders. That keeps me cool and I drink two 32 ounce bottles of water that has been mixed with Liquid-IV (Pedialyte on steroids). I never had to do all that before taking Prednisone, but seems as if Prednisone messes with my internal temp and heart rate. My heart rate was getting too high so I wear a Polar H10 Chest Strap heart rate monitor and every two minutes the Polar App on my iPhone tells me my average heart rate since the last two minute increment. All of this has helped me be able to continue walking 45 - 60 miles each week. My pace was 16 minutes/mile before PMR, but is now 18 - 19 minutes/mile in order to keep my average heart rate at 120 BPM which is 80% for a 70 year old. When the hot weather is done in the fall, I suspect my pace will pick up. Thanks again!
I received the two shots in August/September of 2018. The painful symptoms of Polymyalgia Rheumatica appeared shortly thereafter - morning pain/stiffness, in chest, shoulders, neck, back and hips. Bllod analysis failed to identify the cause with any certainty. Finally a PA used Prednisone treatment to at least temporarily relieve my discomfort. It worked almost immediately, thus revealing the PMR...and I’ve been “on” the damned stuff ever since. Tapering hasn’t worked, the discomfort is intense, constant, very depressing. Have other members of this group had a similar reaction to the shingles vaccination. (Btw I am not an anti-vaxxer, not even close). Thanks for your kind attention. Am a 77 year old male in otherwise reasonably good health living in Northern VErmont.
I also was diagnosed with Polymyalgia Rheumatica after receiving the Shingrix vaccine. I received my first dose in May 2020. By the end of June I was experiencing pain/stiffness in my neck, shoulders and hips. I am 55 years old and in fairly good shape. Being a regular at the gym, I attributed the symptoms to an over zealous workout. I took the second dose of the vaccine in July. By early August, the pain/stiffness had gotten much worse and now involved my knees. I was in so much pain I could no longer workout and could barely get out of bed. By the end of the summer, I realized there was something else going on. I was diagnosed with PMR just last week and started a round of prednisone. Within 2 days, I felt like a new person. I am hoping I won't have to be on the prednisone too long.
I also was diagnosed with Polymyalgia Rheumatica after receiving the Shingrix vaccine. I received my first dose in May 2020. By the end of June I was experiencing pain/stiffness in my neck, shoulders and hips. I am 55 years old and in fairly good shape. Being a regular at the gym, I attributed the symptoms to an over zealous workout. I took the second dose of the vaccine in July. By early August, the pain/stiffness had gotten much worse and now involved my knees. I was in so much pain I could no longer workout and could barely get out of bed. By the end of the summer, I realized there was something else going on. I was diagnosed with PMR just last week and started a round of prednisone. Within 2 days, I felt like a new person. I am hoping I won't have to be on the prednisone too long.
Hi @cmm445, Welcome to Mayo Clinic Connect. I was 60 when my first occurrence of PMR happened. It took 3-1/2 years for me to taper off. The second occurrence was 6 years later and it took 1-1/2 years to taper off prednisone. A friend of mine was diagnosed with PMR around the same time as I was and his has never come back. My rheumatologist was great helping me put together a couple of different taping schedules until I was finally able to get off of the prednisone. One thing I might suggest would be to keep a log while you are tapering off of prednisone and record the dosage and a pain scale of 1 to 5 or 1 to 10 whatever works for you so you can discuss it with your doctor or rheumatologist if you are having trouble tapering off.
I also was diagnosed with Polymyalgia Rheumatica after receiving the Shingrix vaccine. I received my first dose in May 2020. By the end of June I was experiencing pain/stiffness in my neck, shoulders and hips. I am 55 years old and in fairly good shape. Being a regular at the gym, I attributed the symptoms to an over zealous workout. I took the second dose of the vaccine in July. By early August, the pain/stiffness had gotten much worse and now involved my knees. I was in so much pain I could no longer workout and could barely get out of bed. By the end of the summer, I realized there was something else going on. I was diagnosed with PMR just last week and started a round of prednisone. Within 2 days, I felt like a new person. I am hoping I won't have to be on the prednisone too long.
So we both have similar stories with PMR occurrence after the shingrix vaccine. I wish you the very best and glad that you’ve got relief just like I did starting prednisone. I have followed the usual tapering regimen and I’m now down to 5 mg daily after starting in March. I did report my reaction to GSK the shingrix company. If you can I think it would be worth it. This is made me a little hesitant to be first in line for the COVID-19 vaccine whenever it is available However, I did get the flu shot this year and had no adverse reactions. Take care.
I also was diagnosed with Polymyalgia Rheumatica after receiving the Shingrix vaccine. I received my first dose in May 2020. By the end of June I was experiencing pain/stiffness in my neck, shoulders and hips. I am 55 years old and in fairly good shape. Being a regular at the gym, I attributed the symptoms to an over zealous workout. I took the second dose of the vaccine in July. By early August, the pain/stiffness had gotten much worse and now involved my knees. I was in so much pain I could no longer workout and could barely get out of bed. By the end of the summer, I realized there was something else going on. I was diagnosed with PMR just last week and started a round of prednisone. Within 2 days, I felt like a new person. I am hoping I won't have to be on the prednisone too long.
Hi, your description of your experience with the vaccine s then the symptoms could have been ME. I had such a similar experience separated by one year, 2019. It took me several months to get a diagnosis. I too was nearly paralyzed. The prednisone helped immediately (36 hours).
My doc says there’s no connection but I feel very strongly that there is.
I’ve tried tapering but was not successful. It has been 6.5 months. I’m down to 13 mgs and hoping to go to 12 in October. Previously when I got to 8, the symptoms returned and also GCA giant cell arteritis symptoms, nothing to mess with. Also, my blood work was not classic for the disorder, they tried the prednisone based on my symptoms, and it worked.
Interesting to read about the tapering. I too have had a relapse at 8, and had to go back up to 15 mg. A dear friend/colleague physician from japan who treats patients for auto immune disease, strongly suggested that tapering be very very slow, especially as we go below 10, it is incrementally a larger jump, so going no more than 1 mg per month or whatever your timeframe should be considered. I too want to be off of it, but getting the giant cell arteritis symptoms was no fun and knowing how serious it is, made me take this next round of tapering very slow. Take care everyone.
I received the two shots in August/September of 2018. The painful symptoms of Polymyalgia Rheumatica appeared shortly thereafter - morning pain/stiffness, in chest, shoulders, neck, back and hips. Bllod analysis failed to identify the cause with any certainty. Finally a PA used Prednisone treatment to at least temporarily relieve my discomfort. It worked almost immediately, thus revealing the PMR...and I’ve been “on” the damned stuff ever since. Tapering hasn’t worked, the discomfort is intense, constant, very depressing. Have other members of this group had a similar reaction to the shingles vaccination. (Btw I am not an anti-vaxxer, not even close). Thanks for your kind attention. Am a 77 year old male in otherwise reasonably good health living in Northern VErmont.
Your experience sounds very similar to my own. My health care provider assures me the shingles vaccinations are not related to PMR (Unsure how confident I am about this "assurance").
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@drtiminaz, It sounds like you have a pretty good plan for tapering off of prednisone and it's going well. I've had the hand cramps but mine are more associated with my carpal tunnel I think. I've not seen the small blisters you are describing but do believe you may be correct about being a side effect of the prednisone. Maybe other members can share their experience. I did find an article that talks about it.
Excerpt from article linked below -- "Long-term use of strong steroids can cause widespread purpura and bruising, normally on extensor surfaces of the hands, arms and thighs. It is caused by atrophy of the collagen fibres supporting blood vessels in the skin. A similar appearance is also found in senile-type purpura."
-- Purpuric Rashes: https://patient.info/doctor/purpuric-rashes
Have you mentioned the symptoms to your primary care doctor? It might be a good idea just to discuss the symptoms with a doctor or pharmacist.
Thanks John! I just found a couple of articles too that describe the same “Small Reddish-Purplish Pin-Point Sized Spots On Skin” as a side effect of Prednisone. I’ll see my primary care in a couple of weeks and mention it to him. Thanks again!
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1 ReactionDr. Tim, a few thoughts from a similar PMR sufferer: I just turned 72 and like you, continue to walk and play golf quite a bit (I’m
In Phoenix). The key for taking Prednisone is to NOT have a preset tapering schedule. The disease sets the schedule. Your goal is to take the least amount that fully voids all of your PMR related pain. We are all different and cannot predict in advance when to taper; rather taper slowly when you are feeling good and see if it works. You want to avoid flares if possible. No one wants to be on Prednisone, but it sure beats PMR pain, so go slow. On the positive side, no one wants PMR either, but it sure beats most other autoimmune diseases so in that sense we can count our blessings!
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Helpful -
Hug
3 ReactionsThanks for the advice Pfafpa! Be safe in the Phoenix sun! I’ve been able to get at least 6 miles in hiking each day
North of Tucson. Usually it’s mid-90s by the time I get done and every two miles at someone’s hose bib I soak my long sleeve shirt, do-rag, boonie hat and chamois rag I wear under my shirt around my shoulders. That keeps me cool and I drink two 32 ounce bottles of water that has been mixed with Liquid-IV (Pedialyte on steroids). I never had to do all that before taking Prednisone, but seems as if Prednisone messes with my internal temp and heart rate. My heart rate was getting too high so I wear a Polar H10 Chest Strap heart rate monitor and every two minutes the Polar App on my iPhone tells me my average heart rate since the last two minute increment. All of this has helped me be able to continue walking 45 - 60 miles each week. My pace was 16 minutes/mile before PMR, but is now 18 - 19 minutes/mile in order to keep my average heart rate at 120 BPM which is 80% for a 70 year old. When the hot weather is done in the fall, I suspect my pace will pick up. Thanks again!
I also was diagnosed with Polymyalgia Rheumatica after receiving the Shingrix vaccine. I received my first dose in May 2020. By the end of June I was experiencing pain/stiffness in my neck, shoulders and hips. I am 55 years old and in fairly good shape. Being a regular at the gym, I attributed the symptoms to an over zealous workout. I took the second dose of the vaccine in July. By early August, the pain/stiffness had gotten much worse and now involved my knees. I was in so much pain I could no longer workout and could barely get out of bed. By the end of the summer, I realized there was something else going on. I was diagnosed with PMR just last week and started a round of prednisone. Within 2 days, I felt like a new person. I am hoping I won't have to be on the prednisone too long.
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Helpful -
Hug
1 ReactionHi @cmm445, Welcome to Mayo Clinic Connect. I was 60 when my first occurrence of PMR happened. It took 3-1/2 years for me to taper off. The second occurrence was 6 years later and it took 1-1/2 years to taper off prednisone. A friend of mine was diagnosed with PMR around the same time as I was and his has never come back. My rheumatologist was great helping me put together a couple of different taping schedules until I was finally able to get off of the prednisone. One thing I might suggest would be to keep a log while you are tapering off of prednisone and record the dosage and a pain scale of 1 to 5 or 1 to 10 whatever works for you so you can discuss it with your doctor or rheumatologist if you are having trouble tapering off.
Did your doctor suggest a tapering schedule?
So we both have similar stories with PMR occurrence after the shingrix vaccine. I wish you the very best and glad that you’ve got relief just like I did starting prednisone. I have followed the usual tapering regimen and I’m now down to 5 mg daily after starting in March. I did report my reaction to GSK the shingrix company. If you can I think it would be worth it. This is made me a little hesitant to be first in line for the COVID-19 vaccine whenever it is available However, I did get the flu shot this year and had no adverse reactions. Take care.
-
Like -
Helpful -
Hug
1 ReactionHi, your description of your experience with the vaccine s then the symptoms could have been ME. I had such a similar experience separated by one year, 2019. It took me several months to get a diagnosis. I too was nearly paralyzed. The prednisone helped immediately (36 hours).
My doc says there’s no connection but I feel very strongly that there is.
I’ve tried tapering but was not successful. It has been 6.5 months. I’m down to 13 mgs and hoping to go to 12 in October. Previously when I got to 8, the symptoms returned and also GCA giant cell arteritis symptoms, nothing to mess with. Also, my blood work was not classic for the disorder, they tried the prednisone based on my symptoms, and it worked.
-
Like -
Helpful -
Hug
1 ReactionInteresting to read about the tapering. I too have had a relapse at 8, and had to go back up to 15 mg. A dear friend/colleague physician from japan who treats patients for auto immune disease, strongly suggested that tapering be very very slow, especially as we go below 10, it is incrementally a larger jump, so going no more than 1 mg per month or whatever your timeframe should be considered. I too want to be off of it, but getting the giant cell arteritis symptoms was no fun and knowing how serious it is, made me take this next round of tapering very slow. Take care everyone.
-
Like -
Helpful -
Hug
2 ReactionsYour experience sounds very similar to my own. My health care provider assures me the shingles vaccinations are not related to PMR (Unsure how confident I am about this "assurance").