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terre (@terre)

Had Shingles shot and now have PMR

Polymyalgia Rheumatica (PMR) | Last Active: Jun 28, 2021 | Replies (31)

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@johnbishop

Hello @terre, welcome to Connect. I'm sorry to hear you were diagnosed with polymyalgia rheumatica (PMR). I've had 2 occurrences of PMR but it is currently in remission. Mine was diagnosed prior to having the shingles shot. I have been debating on getting the Shingrix shot myself. Here's some information I found about:

What Everyone Should Know about Shingles Vaccine (Shingrix)
https://www.cdc.gov/vaccines/vpd/shingles/public/shingrix/index.html

How is your doctor treating your PMR?

There is another discussion on Connect that you may want to join here:

> Groups > Autoimmune Diseases > PMR Anyone?
https://connect.mayoclinic.org/discussion/pmr-anyone/

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Replies to "Hello @terre, welcome to Connect. I'm sorry to hear you were diagnosed with polymyalgia rheumatica (PMR)...."

Good Morning,
My hubby and I both had the Shingrix shots. We had the first injection with no reaction, not even a sore arm. There was a shortage for the 2nd dosage, so we got that shot outside the 6 months. We investigated and were told that it was fine to have the shots so far apart. The 2nd dosage impacted us differently from the 1st. Both of us had VERY sore arms by the injection site that lasted a few days. It did not swell or turn red. In addition, we both felt 'out of sorts' the day after. We just rested on that day and were fine the next. I really can't explain what was not right, we just didn't feel right.

I am NOT in the medical field, but MY PERSONAL OPINION is that the risk of getting a serious reaction is so minimum, that I feel it is worth it.

About 6 years ago I was at work. I was a principal in an elementary school. I was watching the students rehearse for their talent show. All of a sudden, I had an issue focusing on the children. I strained to focus my eyes and I did. The next morning, on my way to work, I noticed I had double vision, again I strained to focuse and I was fine. Later on in the day, I was standing outside my office looking down the hallway. Someone was calling me, I couldn't make out who it was and I had on my glasses. I also had a very mild headache between my brows. I went on for a little longer and my vision became worse. I called my hubby to get the phone number of our eye doctor.

Upon examination, my doctor said the eyes themselves were healthy. He said he has seen this before in patients. He said it looked liked the Shingles virus. He suggested I go to my PCP. Since things were not getting better, we did. She had never seen it before. She asked if I had a rash. I didn't. All I had were 2 tiny pimples behind one ear that I noticed because they itched. She took a swab and sent it out to be examined. In the meanwhile, she told me to 'keep an eye on things.' Pardon the pun.

My eyes remained crossed and I still had tha nagging headache. My PCP sent me for a brain MRI. All was fine. A couple of days later she suggested I go to the Wilmar Eye Institute in Philadelphia. The reviewed the MRI and took a ton of blood tests. I had 6th Nerve Palsy. Then, a few days later, the results from the swab came back. I had Shingles! The Shingle virus, not the rash, went into my eye and attack the nerve. I had to wear a patch for a while and I could not work. My eye remained turned in for a while and since we were not sure WHEN I actually contracted the virus, I could not return to work. I had several pregnant teachers who, if got the virus, could harm the baby. In addition, I could not drive. I could not walk straight or read (not good if you do that most of your day).

Fast forward a few months to the present. I have some residual issues from the virus. I have an issue focusing on small print when reading. I also have a difficult time tracking when I do read. My peripheral vision is poor. When I look all the way over to either side, I have double vision. And finally, even if I just need to focus on one side of my face or the other, I have to close the opposite eye. For example, when I pluck my eyebrows, if I am working on the right side, I have to close my left eye.

I know this is an extreme case, but I am not willing to take a chance of this happening again, and it could. As my neurosurgeon said, 'Nothing about me is normal." (HE DIDN'T MEAN IT IN A MEAN WAY, AS HE IS TRYING TO FIGURE OUT SOME ISSUES I AM HAVING.).

Have a great day!
Ronnie (GRANDMAr)

I am not concerned for those getting the new shingles vaccine as it is given in two doses and does not have PMR as a possible side effect. I am concerned for all of us that had the old vaccine and now have PMR.

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