Had Shingles shot and now have PMR

Posted by terre @terre, Apr 1, 2019

The shingles shot has now been replaced with a new one that is giving in two doses. I had the shingles in 2014, but since you can get them again I had the shot. Now I have been diagnosed with PMR. The original shot has PMR as a possible side effect. I was never informed of that possibility.

Interested in more discussions like this? Go to the Polymyalgia Rheumatica (PMR) group.

Interesting experience! Wow. Glad you didn’t have any negative effects!

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@miller1949

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.

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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.

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@grandmar

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)

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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?

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@terre

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.

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i completely agree with you terre. that is my take too, I'd take the shingles rather than living with PMR.

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@karinaph

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?

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@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!

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@grandmar

@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!

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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.

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@karinaph

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.

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@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

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@grandmar

@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

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These “disabilities” that have developed for you and me and so many others really give me the perspective of those who live with serious disabilities, humbling. Sorry that you sustained permanent nerve damage. That is the one thing that really has made me think about surgery too. A good friend warned me about ignoring it, as he did and he has to use a cane and has foot drop due to the nerve damage. I guess this is a discussion for a different site. But it does center on “inflammation” to some extent. I’m trying to lower my inflammatory foods etc that can exacerabate it true inflammation. Are you able to do water therapy, ie spa/hot tub? It is a real game changer for me, plus my son introduced us to a post workout tool called a theragun. It is basically a percussive massager that really makes you feel soooo much better, increases blood flow, and likely lymphatic flow. He’s a competitive runner and use it post work out. It’s really a great addition. Maybe it could be of help. Not inexpensive but really worth it. Hope you can get out there in whatever capacity. Trekking sticks are a wonderful way to support yourself too.

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@karinaph

These “disabilities” that have developed for you and me and so many others really give me the perspective of those who live with serious disabilities, humbling. Sorry that you sustained permanent nerve damage. That is the one thing that really has made me think about surgery too. A good friend warned me about ignoring it, as he did and he has to use a cane and has foot drop due to the nerve damage. I guess this is a discussion for a different site. But it does center on “inflammation” to some extent. I’m trying to lower my inflammatory foods etc that can exacerabate it true inflammation. Are you able to do water therapy, ie spa/hot tub? It is a real game changer for me, plus my son introduced us to a post workout tool called a theragun. It is basically a percussive massager that really makes you feel soooo much better, increases blood flow, and likely lymphatic flow. He’s a competitive runner and use it post work out. It’s really a great addition. Maybe it could be of help. Not inexpensive but really worth it. Hope you can get out there in whatever capacity. Trekking sticks are a wonderful way to support yourself too.

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I do go for theraputic massages, which are great!
I live in Florida and have a pool.
When it is warm outside, I go in every day.
I always tell my hubby how I feel "normal" when I am in the water.
I swim and do all sorts of exercises including jogging.
In the mornings, I do the treadmill.
All this exercise does not seem to make a difference as far as strengthening my leg muscles.
I also have neuropathy an my big toe, on my right foot is dead, so it drops and will sometimes make me trip if I don't make sure I am lifting my feet when I walk (it gets caught when it drops).
Waiting for the weather to warm up so we can get into the pool!!

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@grandmar

@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

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@grandmar I've always been amazed at your can-do spirit, Ronnie!

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@hopeful33250

@grandmar I've always been amazed at your can-do spirit, Ronnie!

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@hopeful33250
Thank you! That is so kind of you to say!!
Ronnie

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@grandmar

@hopeful33250
Thank you! That is so kind of you to say!!
Ronnie

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@grandmar
Just the truth, ma'am, nothing but the truth! 😃
(An old Dragnet line – you might not be old enough to remember when Dragnet was on TV. I'm undoubtedly dating myself here.)

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