Had Shingles shot and now have PMR

Hi Ronnie,
I am writing you because, like you, I also contracted the shingles virus after receiving the Shingrix shot. Interestingly, like you, my symptoms were also a headache and a palsy, in my case it was diagnosed as Bell's Palsy and affected control of mouth muscles. (I couldn't hold liquids in my mouth). However, the medication I mentioned in the note below, which I posted on this website, overcame both symptoms, and I was completely healthy 2 1/2 weeks after taking the medication. I hope your symptoms eventually subside.
-Brian., Gambier, Ohio

Here is what I posted:
On Aug. 3, I wrote on this discussion page about my contracting a virus on June 12, 2020, three weeks after getting the first of two Shingrix shots, and how a medication (Valacyclovir) used to fight a broad spectrum of viruses -- including the one causing chickenpox and shingles -- was successful in overcoming the virus. Curious about the timing of my contracting a virus that was successfully targeted by an anti-shingles medication, just three weeks after receiving the Shingrix vaccine, I contacted my family physician to see if there was a link. In early August, a medical aide in his office phoned me to say -- and this is my best interpretation of an explanation I found difficult to understand -- that my body's ability to fight off the virus might have been compromised by its adjustment to the vaccine. That still left me wondering if I should get the second Shingrix vaccination. I asked for an opinion, and about a week ago my physician recommended I not receive the second dose of the vaccine, which I would need to get within six months of the first dose. An aide from his office told me that after reviewing articles on the clinical website uptodate.com on the possible link of the vaccine to my illness, Dr, Wilson concluded that I faced a health risk in getting the second shot. I searched that website but was unable to find information on that issue. I hope by sharing this information to enlighten others who contracted a shingles-type virus after getting a Shingrix shot. And, because the vaccine provides a measure of protection against a painful condition, I am also curious if others in the medical community concur in Dr. Wilson's opinion,

Since my last post in August, there have been interesting developments. After receiving advice from my family doctor NOT to get the second Shingrix shot, I asked my son, an MD-PhD neuropathologist, whether he agreed, and he didn't. Confused by this conflict in opinion, sometime in the early fall I asked my doctor for a referral to a specialist in infectious diseases, and was set up for an appointment at a top Columbus, Ohio hospital in mid-December. But well before setting up this appointment, I had done a routine check of my other vaccinations and, discovering my DTaP vaccine was close to needing renewal, had scheduled a renewal shot for early December at my local health department. As I arrived for my DTaP shot, the nurse and I had a cursory exchange of information, but neither of us verified which shot I was getting. As it turned out, the nurse in perusing my chart, had seen I had had the first but not the second Shingrix shot and assumed that was why I had come in. It was only after she had administered the second Shingrix, that I realized I had been given it and not the DTaP. I braced myself for a bad reaction, but not only did that not materialize, but I didn't even have a sore arm. With more than a month having elapsed since then, I have not experienced any negative affect from the shot. Perhaps, it was suggested by another nurse at the health department, the first shot had protected me.

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)

Hello
I am glad that the new Shingles vaccine given in two doses ( Shingrix) is having better results than the original vaccine given in one dose ( Zostavax) . I received the Zostavax ( a live vaccine) and then was diagnosed with PMR. I believe MANY MANY people on this feed have also contracted PMR from that original vaccine. (Merck) Had I known that PMR was a side effect I Would have never agreed to get the vaccine. I would rather have the shingles again than to be living with PMR.

GrandmaR, your story of your shingles experience is quite stunning. I'm so sorry this happened to you. I have similar symptoms, having nothing to do with shingles.for about 12 years ago, I began having double vision, diplopia as it is referred to. I was also checked out at the hospital for serious matters, brain tumor, MS, and who knows what else. All came back negative but I do have, 6th Cranial Nerve Palsy. All the Neuro ophthalmologists say is it is "idiosyncratic", a nice word for "who knows". I live with it, and it not fun. I wear prisms in my glasses to help to reduce the double vision, but it is not 100%. I get checked every few years and still there is no further understanding of this malady.
Interestingly, I received the shingrix vaccine in summer 2019 and within a few months started becoming increasing disabled, cramps, inability to ambulate arms/legs, weight loss, extreme fatigue, and was diagnosed with PMR and the GCA. So, there you go. For me the vaccine was the trigger to the PMR (my opinion) for you the virus attacked your nerve. There are connections there no doubt.
BTW, I had shingles much earlier in life (after childbirth) around my waist, and while it was uncomfortable it wasn't horrible. Just my experience with shingles around the girdle not the head/eye region. Thank you for sharing your experience. I could not tell, do you also have PMR?

@karinaph
Hi!
So sorry to hear your story. I do not have PMR, although it sounds a lot like Fibromyalgia, which I do have. I also have OA and spinal problems. It's hard to tell where my pain comes from. I had 2 spinal surgeries a couple of years ago and it helped a lot!
My vision issues were temporary, although I still have some permanent affects. The doctor who thought I had shingles was my eye doctor and he was right. He did tell me that if my eyes didn't get better I would need glasses like yours.
I've had Shingles shots since they came out.
Of course, these days, it's the COVID shot we are trying to get.
Best of luck to you!

grandmaR, so glad you recovered from the diplopia. I was hoping mine was temporary too, but alas it was not to be. It definitely impacts my life, but life goes on and we adjust. Getting older takes courage right?? I too have spinal issues, so again I relate to your statement about where pain comes from. I've avoided surgeries for 30+ years, opting for soft tissue therapy, PT, exercise and other non invasive treatments. It's not fun of course and I have come close to considering surgery, esp given the advances in recent years. But as you say, everything is on the back burner until the COVID matter is far behind us. probably a year or so. Good luck to you too.

@karinaph
You are certainly right that getting older takes courage and patience!
I waited for a long time for surgery, too.
I had to take an early retirement because of my lingering eye issues and the pain from my back.
I hardly walked in 3 years!
I did all the non-invasive things, too, but they didn't work.
After I retired we moved to a warm weather climate that helped, but not enough.
I had no quality of life and it was getting to me and unfair to my hubby (in MY eyes).
So, I searched out a neurosurgeon to see just how bad I was and what my options were.
Long story short, I waited so long for the surgery that I have been left with permanent nerve damage that has impacted my ability to walk like I once did. I need a cane and will not walk alone because I have fallen a couple of times and after spine surgery, last thing you want to do is fall. A fall could cause horrible results.
Anyway, I'm here and pushing along!
Enjoy your weekend!
Ronnie