PMR and the new Shingles vaccine

Posted by alan bruce @alanbruce, Feb 5, 2019

I have PMR and I take 2mg of Prednisone daily. I am over 70. Can I or should take the new shot or the old vaccine

Liked by Dee

@grammlyn

I hate to sound stupid.. but what is PMR?

Jump to this post

Polymyalgia Rheumatica

REPLY
@karlskl

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.

Jump to this post

Hello, I'm a retired British doctor in previous very good health, now 73. I received the two Shingrix shots (new non-live vaccine) last August 2019, spiked a high temperature that night but then OK. However, within 3 weeks I'd developed the symptoms and distribution of polymyalgia rheumatica – pectoral and especially pelvic girdles, big muscle groups pain and stiffness. Playing piano fine, but buttocks painful on the piano stool. It's all still there 7 months later and I'm hobbling around – though fortunately I can control it on ibuprofen, so can avoid steroids.
There was a rheumatology conference in 2019 in Ohio where academics were expressing their worries about this vaccine. It's not the vaccine itself, but a new adjuvent (added to initiate the immune response) from a tree in Chile that promotes a very intense reaction and gives highly efficient protection. But the downside is that sufferers who already have auto-immune conditions could be made worse, and also that the vaccine could actually spark new auto-immune conditions such as kariski and I are experiencing.

REPLY
@jennyjay

Hello, I'm a retired British doctor in previous very good health, now 73. I received the two Shingrix shots (new non-live vaccine) last August 2019, spiked a high temperature that night but then OK. However, within 3 weeks I'd developed the symptoms and distribution of polymyalgia rheumatica – pectoral and especially pelvic girdles, big muscle groups pain and stiffness. Playing piano fine, but buttocks painful on the piano stool. It's all still there 7 months later and I'm hobbling around – though fortunately I can control it on ibuprofen, so can avoid steroids.
There was a rheumatology conference in 2019 in Ohio where academics were expressing their worries about this vaccine. It's not the vaccine itself, but a new adjuvent (added to initiate the immune response) from a tree in Chile that promotes a very intense reaction and gives highly efficient protection. But the downside is that sufferers who already have auto-immune conditions could be made worse, and also that the vaccine could actually spark new auto-immune conditions such as kariski and I are experiencing.

Jump to this post

Welcome to Connect @jennyjay. Thank you for sharing your experience and knowledge. It is really helpful to others sharing your symptoms. I have had two occurrences of PMR but it is currently in remission. I have debated about getting the new Shingrix shot but still undecided. I would also hate to get shingles 🙁

Liked by calicojoy

REPLY
@johnbishop

Welcome to Connect @jennyjay. Thank you for sharing your experience and knowledge. It is really helpful to others sharing your symptoms. I have had two occurrences of PMR but it is currently in remission. I have debated about getting the new Shingrix shot but still undecided. I would also hate to get shingles 🙁

Jump to this post

John, I got the Shingrix while I was on prednisone for GCA and had no reaction. Saw too many people with Shingles and including my mother. I got the vaccine when I was 74. Asked my rheumatologist at Mayo and he said no problem getting the vaccine. Take care and stay safe.

REPLY
@karlskl

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.

Jump to this post

I had a similar reaction after the second Shingrex vaccine I received on February 29, 2020. After some fever and overall bodyaches it settled into my hips and shoulders. Getting worked up for PMR in on prednisone 10 mg which is relieving some of my symptoms. I am a pharmacist and pro vaccinations, but if it triggered my PMR I would’ve really thought about it before getting it. Very thankful to have found this forum. I wish you the very best in maintaining your optimal health.

REPLY
@briand3960

I had a similar reaction after the second Shingrex vaccine I received on February 29, 2020. After some fever and overall bodyaches it settled into my hips and shoulders. Getting worked up for PMR in on prednisone 10 mg which is relieving some of my symptoms. I am a pharmacist and pro vaccinations, but if it triggered my PMR I would’ve really thought about it before getting it. Very thankful to have found this forum. I wish you the very best in maintaining your optimal health.

Jump to this post

Hello @briand3960, Welcome to Mayo Clinic Connect. Thank you for sharing your experience with the second Shingrix shot. It really helps to learn from experiences of other members. I will probably get my initial Shingrix shot after this COVID-19 settles and things get somewhat back to normal. My PMR is still in remission but after 2 occurrences of it I would not like to have it come back.

Liked by calicojoy

REPLY
@jennyjay

Hello, I'm a retired British doctor in previous very good health, now 73. I received the two Shingrix shots (new non-live vaccine) last August 2019, spiked a high temperature that night but then OK. However, within 3 weeks I'd developed the symptoms and distribution of polymyalgia rheumatica – pectoral and especially pelvic girdles, big muscle groups pain and stiffness. Playing piano fine, but buttocks painful on the piano stool. It's all still there 7 months later and I'm hobbling around – though fortunately I can control it on ibuprofen, so can avoid steroids.
There was a rheumatology conference in 2019 in Ohio where academics were expressing their worries about this vaccine. It's not the vaccine itself, but a new adjuvent (added to initiate the immune response) from a tree in Chile that promotes a very intense reaction and gives highly efficient protection. But the downside is that sufferers who already have auto-immune conditions could be made worse, and also that the vaccine could actually spark new auto-immune conditions such as kariski and I are experiencing.

Jump to this post

I developed Shingles in November 2018. A month later I was diagnosed with PMR. Which came first the chicken or the egg? Did I already have PMR which lowered my immune system so that the PMR emerged?

REPLY
@karlskl

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.

Jump to this post

I have the same story. I received the second Shingles vaccine in March and within 3 weeks my primary care physician diagnosed me with PMR. I don’t know if those events are related, but I sure wonder! I see the Rheumatologist Wednesday for the first time on a video conference. I am on three 5mg Prednisone per day and Vicodin as needed. I tend to take two 750 mg Vicodin cut in half (so four pills) 2 hours before bedtime, bedtime, 3 and 6 hours later. That seems to be working enough so I can sleep through the pain. The pain is minimal during the day and I can walk three miles each day but can barely raise my arms sometimes. I’ll just have to see how this plays out. I’m 70 years old and was very active. I do apply ice or Bio-freeze to my upper arms before bed and usually again in the middle of the night.

REPLY
@drtiminaz

I have the same story. I received the second Shingles vaccine in March and within 3 weeks my primary care physician diagnosed me with PMR. I don’t know if those events are related, but I sure wonder! I see the Rheumatologist Wednesday for the first time on a video conference. I am on three 5mg Prednisone per day and Vicodin as needed. I tend to take two 750 mg Vicodin cut in half (so four pills) 2 hours before bedtime, bedtime, 3 and 6 hours later. That seems to be working enough so I can sleep through the pain. The pain is minimal during the day and I can walk three miles each day but can barely raise my arms sometimes. I’ll just have to see how this plays out. I’m 70 years old and was very active. I do apply ice or Bio-freeze to my upper arms before bed and usually again in the middle of the night.

Jump to this post

Hello @drtiminaz, Welcome to Mayo Clinic Connect. Thank you for sharing your experience with the Shingrix vaccine. I have not had the new Shingrix vaccine but after reading some experiences here and already going through 2 bouts with PMR I really don't want to chance having my PMR come back. I'm 76 and plan to discuss this with my primary care doctor at my next appointment hopefully a little later this year when the COVID-19 quiets down some. For both occurrences of PMR I was started at 20mg of prednisone and it immediately took away all of pain for me. Then after a few weeks I started tapering off but it took me a little over 3 years to taper off with my first round of PMR.

It's good that you are active. Exercise does help with the PMR symptoms as long as you don't overdue it. Do you have more pain at night or in the morning from the PMR? You may want to discuss dosage and possibly splitting the prednisone dosage between morning and evening. I think other members have mentioned that has helped them when they have more pain at night and have trouble sleeping.

I did a little research and found some information that you may want to share with your primary care physician from the drug manufacturer Merck. The information below was taken from the following link:
https://www.merckvaccines.com/zostavax/
——————————————————-
"Select Safety Information for ZOSTAVAX
Vaccination with ZOSTAVAX does not result in protection of all vaccine recipients.

Do not administer ZOSTAVAX to individuals who are immunodeficient or immunosuppressed due to disease or therapy, as serious or fatal disseminated vaccine strain varicella-zoster virus disease may occur. Causes of immunodeficiency or immunosuppression may include, but are not limited to, primary or acquired immunodeficiency states, AIDS or other clinical manifestations of infection with human immunodeficiency viruses, leukemia, lymphoma or other malignant neoplasms affecting the bone marrow or lymphatic system, and immunosuppressive therapy.

A reduced immune response to ZOSTAVAX was observed in individuals who received concurrent administration of PNEUMOVAX®23 (Pneumococcal Vaccine Polyvalent) and ZOSTAVAX compared with individuals who received these vaccines 4 weeks apart. Consider administration of the two vaccines separated by at least 4 weeks.

Serious vaccine-related adverse reactions that have occurred following vaccination with ZOSTAVAX include asthma exacerbation and polymyalgia rheumatica. Other serious adverse events reported following vaccination with ZOSTAVAX include cardiovascular events (congestive heart failure, pulmonary edema). Common adverse reactions occurring in ≥1% of vaccinated individuals during clinical trials include injection-site reactions (erythema, pain/tenderness, swelling, hematoma, pruritus, warmth) and headache."
——————————————————-

Liked by calicojoy

REPLY
@johnbishop

Hello @drtiminaz, Welcome to Mayo Clinic Connect. Thank you for sharing your experience with the Shingrix vaccine. I have not had the new Shingrix vaccine but after reading some experiences here and already going through 2 bouts with PMR I really don't want to chance having my PMR come back. I'm 76 and plan to discuss this with my primary care doctor at my next appointment hopefully a little later this year when the COVID-19 quiets down some. For both occurrences of PMR I was started at 20mg of prednisone and it immediately took away all of pain for me. Then after a few weeks I started tapering off but it took me a little over 3 years to taper off with my first round of PMR.

It's good that you are active. Exercise does help with the PMR symptoms as long as you don't overdue it. Do you have more pain at night or in the morning from the PMR? You may want to discuss dosage and possibly splitting the prednisone dosage between morning and evening. I think other members have mentioned that has helped them when they have more pain at night and have trouble sleeping.

I did a little research and found some information that you may want to share with your primary care physician from the drug manufacturer Merck. The information below was taken from the following link:
https://www.merckvaccines.com/zostavax/
——————————————————-
"Select Safety Information for ZOSTAVAX
Vaccination with ZOSTAVAX does not result in protection of all vaccine recipients.

Do not administer ZOSTAVAX to individuals who are immunodeficient or immunosuppressed due to disease or therapy, as serious or fatal disseminated vaccine strain varicella-zoster virus disease may occur. Causes of immunodeficiency or immunosuppression may include, but are not limited to, primary or acquired immunodeficiency states, AIDS or other clinical manifestations of infection with human immunodeficiency viruses, leukemia, lymphoma or other malignant neoplasms affecting the bone marrow or lymphatic system, and immunosuppressive therapy.

A reduced immune response to ZOSTAVAX was observed in individuals who received concurrent administration of PNEUMOVAX®23 (Pneumococcal Vaccine Polyvalent) and ZOSTAVAX compared with individuals who received these vaccines 4 weeks apart. Consider administration of the two vaccines separated by at least 4 weeks.

Serious vaccine-related adverse reactions that have occurred following vaccination with ZOSTAVAX include asthma exacerbation and polymyalgia rheumatica. Other serious adverse events reported following vaccination with ZOSTAVAX include cardiovascular events (congestive heart failure, pulmonary edema). Common adverse reactions occurring in ≥1% of vaccinated individuals during clinical trials include injection-site reactions (erythema, pain/tenderness, swelling, hematoma, pruritus, warmth) and headache."
——————————————————-

Jump to this post

Thanks for the link. I’ll put a post out to the group about what has helped me, but as usual, your mileage may vary!

REPLY

I was diagnosed by my Primary Care Physician with PMR a month ago. The pain in my upper arms, thighs and buttocks was excruciating 24×7. The Doctor had me do blood tests and the two that pointed to PMR along with my description of the pain was C-Reactive Protein – Range: <7.9 mg/L – Mine: 102.7 and
ESR Erythrocyte Sedimentation Rate (ESR) – Range: <20 mm/hr – Mine: 44. So The Doctor put me on three tablets of 5mg Prednisone every day for a week then taper to two for a week then 1 for a week. I made an appointment with a Rheumatologist which will be tomorrow on teleconference. I never did taper and have been taking three 5mg Prednisone for 2 1/2 weeks and I’ll see what the Rheumatologist suggests tomorrow. The Prednisone eases the pain substantially in fact the only pain I have is in my upper arms and no longer in my upper legs and buttocks. I walk 2 – 3 miles each morning with no pain. I’ve learned to ice my upper arms for half an hour each night at 8 pm and when I go to bed at 11 pm rub Bio-Freeze on each upper arm. Also take all three Prednisone at dinner. I’ve done that the last 2 nights and have had minimum pain in the evening and have slept through the night. Prior to that I was rubbing CBD or Lidocaine cream on my arms and taking Prednisone in the morning. I’d wake up at 4 am in excruciating pain so I kept trying different options and for me taking the Prednisone at dinner and icing my arms at night seems to work best. For pain I take 1/2 a 7.5/325 Vicodin at 8 pm as the pain starts to set in, again at 11 pm as I go to bed and 4 am if I wake up in pain I’ll take another half pill or a full if the pain is really bad.. This regimen seems to work best at this time. So basically the pain is now only in my upper arms, predominantly the right side and is mostly between 8 pm and 8 am. During the day I’m very active and the pain is minimal. Hope these ideas help someone to be creative with things that might work for them.

REPLY
@karlskl

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.

Jump to this post

Hello @karlskl! I can’t say for certain that my initial Shingles shot or Booster has anything to do with PMR, but here is my story. I am 70 years old and August of 2019 I had surgery to reattach the Achilles’ tendon to my heel. In November I got the cast off and to reduce Inflammation was put on a 6 day Prednisone regimen where you take six 4mg MethylPrednisolone tablets, which are equal to 5mg Prednisone, then next day 5 tablets, then 4 etc. On Nov. 20th, I finished the Prednisone. On Dec 10th I had a Flu, Pneumonia and initial Shingles shot in the same day. Then Mid-January I was on the 6 day Prednisone regimen due to a swollen foot. Then mid-February I did another 6 day regimen for the same swollen foot. One month later on March 18th I had the Shingles Booster And within 48 hours the PMR started. Since PMR is believed to be an autoimmune disorder it may be all the stress my body went through from August through March that triggered it. I don’t know, but here I am on 20mg/day Of Prednisone and I suspect The Dr. will be raising that since it seems to be barely working.

REPLY

Hello @drtiminaz, How is your PMR going, have you been able to taper off of the Prednisone yet? My PMR has been in remission since early 2018 when I was able to taper off of Prednisone without much pain. Hope you are doing well.

REPLY
@johnbishop

Hello @drtiminaz, How is your PMR going, have you been able to taper off of the Prednisone yet? My PMR has been in remission since early 2018 when I was able to taper off of Prednisone without much pain. Hope you are doing well.

Jump to this post

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!

REPLY
@drtiminaz

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!

Jump to this post

My worst flare-up occurred when I went from 12.5 down to 10 mg of pred. Had to start over at 20 mg again. decrease very slowly is the key and it does work!

REPLY
Please login or register to post a reply.