Had Shingles shot and now have PMR

Yeah that's great, but my immune system's fighting back hard. Nice that you could tolerate it. Any time I change meds or introduce anything I have a bad edema reaction. I just take it one step at a time, but the Covid vaccine worked fine with me. And I follow my doctor's advice. I didn't bring up the topic of shingles yet.

PMR Induced by Merck Zostavax LIVE Shingles Vaccine
Received vaccine on November 26 2016. The following morning, the symptoms were as if I had a stroke. Could not get out of bed. My world has been turned completely upside down, with PMR Diagnosis, six weeks later, by several Doctors. Going into my sixth year with this debilitating autoimmune disease. Very poor mobility (walker & cane), twenty four/seven brain fog and extreme fatigue. Have started with 20mg Prednisone, and tapered down to 5mg several times, but with no success. Am now taking 7 mg daily for past two years. which barely takes the edge off my pain ! (Prednisone is not without side effects on it's own) !!! Every two years, here in the Yukon Territory, we may have a visiting Rheumatologist or Neurologist, so good luck with that !! Cary Bailie

Hello Carrie @pmr2016, Welcome to Connect. I can't imagine how difficult it is to live in a remote area and have to deal with such terrible symptoms as those with PMR. You will notice that we removed your email address and personal information to protect your privacy. Members can share contact information securely using the private message function. Having spent a few weeks in Nome on a volunteer work assignment, I can relate to how difficult it is to get good health care and specifically see a specialist for treatments. Some of the folks I talked with mentioned having to fly to Anchorage for serious health problems.

My second round with PMR was in 2016 and fortunately I was able to taper off of prednisone after a year and half. You may also be interested in the tips shared in this similar discussion:
– Tapering off of Prednisone https://connect.mayoclinic.org/discussion/prednisone/

I'm guessing because you live in a remote area you already lead a fairly healthy lifestyle. The following article has some foods to avoid and other tips you might find helpful - What to eat if you have polymyalgia rheumatica: https://www.medicalnewstoday.com/articles/321683

Have you tried making any changes to the different foods you eat to see if it might help reduce inflammation which may be one of the biggest factors in what's causing the pain?

Thank You for responding ! I cannot survive without Prednisone ( The Devil's Tic Tacs ). I try to keep a well balanced diet, and am mindful of foods that can cause inflammation ! Have also had (and survived) Left Carotid Endarterectomy, Triple Bypass Open Heart Surgery, Open AAA Surgery(replacement abdominal aortic artery), Pacemaker ... The daily pain is typical PMR, Shoulders, collarbones, shoulder blades, left and right biceps, chronic fatigue and brain fog. difficulty rising to a standing position, difficulty getting out of bed EVERY morning, the list goes on and on and on !! .. ( While I Breathe, I Hope )

Has anyone been diagnosed with PMR after the shingles vaccine?

I had my initial dose of the Zoster vaccine in January 2023. Shortly afterwards l noticed pain in my right inner groin/thigh area. Then the pain returned in the Deltoid muscle where I received the injection in my left arm. It spread to my shoulder back and neck region on both arms and the back of my thighs. Most movements involved in daily living activities are involved.

The diagnosis of PMR was confirmed following blood work and I have been under the care of a rheumatologist. He hoped my symptoms would go into remission but after 6 weeks of NSAI I started on Prednisone of 15mg tapering by 2.5 mg every 14 days. In 3 days I’ll start 7.5mg. The pain and stiffness are manageable but always present being worse overnight and several hours after taking Prednisone with breakfast.

I’m so relieved to find a PMR support group.

Welcome @barbaraphyllis, It is a comfort to find you are not alone. So glad that you have found Connect. You will notice that we moved your post to an existing discussion on the same topic here so that you can meet other members like @pmr2016, @karinaph, @grandmar and others.
--- Had Shingles shot and now have PMR: https://connect.mayoclinic.org/discussion/had-shingles-shot-and-now-have-pmr/.

My PMR is currently in remission but I've since had both the Shingles vaccine and the Zoster vaccine and fortunately with no adverse side effects. Tapering can be a little tricky and I was fortunate to have a rheumatologist who believed slow tapering and listening to your body wins the race. You might find the following discussion helpful if you are still having pain while you are tapering.
--- PMR Dosages and Managing Symptoms: https://connect.mayoclinic.org/discussion/pmr-dosages/.

My rheumatologist had me keep a daily log with the amount of pain I felt when I first got up along with the prednisone dosage for that day. If my pain was greater than a 2 to 3 on my scale of 0 to 10, I didn't taper down if it was time to taper on my schedule or I bumped my dose up by 1/2 of my previous taper so that I didn't go back to the previous dose.

Do you keep a daily log for your pain and the amount of prednisone?

Yes, it is a comfort no longer having to navigate the twisting path of PMR alone. Thank you for your response.

Your suggestion of keeping a journal of dosage and pain levels makes good sense. The tapering every 2 weeks is what my prescription calls for and adjusting according to symptoms feels daunting at this point. But I’ll speak with my rheumatologist when I’m nearing the end of my first taper.

I’m 85 years old and finally feel my age. I have to do everything in a different way and do not know from day to day whether I need to wear a poncho or cape to go out in the cold and rain or if I can comfortably get my arms in a warm jacket or raincoat.

I tend to go days getting only a few hours of sleep in the evening and then being awake the rest of the night. Most of the time I go around in a fog, feeling like I’m over-medicated and sleeping around the clock. I don’t know if it’s from the PMR, the Prednisone or something else. I should mention, I’m post polio syndrome which makes me hypersensitive to all medications and vaccines. Also from allergies and a pre-existing eye condition (EBMD) my eyes always feel heavy and uncomfortable.

I know this is an old post. Do you mind if I ask a few questions about the vaccine and Pmr. Thank you

I posted my PMR diagnosis following the shingles vaccine and was just notified that there was a response today. It appears you were directing your question to a post in 2021, not mine. I would suggest you ask your questions anyway. If I can’t help, perhaps others on this wonderful forum will give you their input.

My rheumatologist agreed my PMR was triggered by the shingles vaccine. He hoped I would go into remission sooner because of this but that does not appear to be the case. I’m approaching six months wrestling with this debilitating, life altering disease. Already I’m experiencing steroid induced hyperglycemia, weight gain, extreme fatigue and brain fog while my PMR symptoms and inflammatory markers are better.

It’s been 6 months since my first shingles vaccine. My doctor recently told me I should get my second dose and a COVID booster now. Originally he said not to get the second shingles vaccine. I don’t know what to do. It’s a damned if you do, damned if you don’t situation. Both shingles and shingles vaccine trigger PMR. Also, both COVID vaccinations and COVID are linked to PMR. So it’s a pick your poison decision. I’m trying to think positive telling myself I’m in the process of healing.

tough decision, if pmr is triggered by the vax and another vax is going to activate an immune system already going awry.... On the other hand, if you already have pmr perhaps another vax won't make much difference? Don't know. My doc said to not get boosters at the present time out of perhaps excess of caution. I think there is presently a lot of uncertainty surrounding the workings of the immune system in particular and vaccines in general.