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.

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/

Liked by grandmaR

REPLY
@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/

Jump to this post

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)

REPLY
@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/

Jump to this post

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.

Liked by grandmaR

REPLY
@terre

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.

Jump to this post

I see. I had the old one, too. I had it after I had the shingles.
My cousin had the first one and had shingles twice.
Ronnie (GRANDMAr)

REPLY

I also became ill after having the first of two Shingrix vaccine shots. Although I have no medical evidence the two are connected, the timing of my illness and the type of medication that successfully cured it, give me reason to raise the question. The first Shingrix shot was May 21., 2020. I had no adverse reaction. On June 12, three weeks later, I developed muscle weakness, body aches, and loss of appetite. In two days, these symptoms abated, but I developed a headache that persisted for three weeks, until I was put on an anti-viral med and prednisone. Just prior to being put in the meds, I noticed a slackness in the corners of my mouth that meant my mouth “leaked” when I used an oral rinse and when I tried to maintain air in my embouchure playing the trumpet. When I visited my family practitioner a day later, I was told I might have Bell’s Palsy. My doctor prescribed Valacyclovir and Prednisone. The headache and slackness in my mouth abated almost immediately after starting the meds. But when I read in the printed information for Valacyclovir that it is used to fight the chickenpox and shingles viruses, it raised a red flag. Could the Shingrix shot I received in late May be connected with the virus I got in mid-June? The timing of my getting the virus through human transmission also seemed strange since I was social distancing, avoiding crowds, and generally “lying low.” My doctor is researching the issue, but I wondered if anyone else has had a similar experience.

REPLY
@miller1949

I also became ill after having the first of two Shingrix vaccine shots. Although I have no medical evidence the two are connected, the timing of my illness and the type of medication that successfully cured it, give me reason to raise the question. The first Shingrix shot was May 21., 2020. I had no adverse reaction. On June 12, three weeks later, I developed muscle weakness, body aches, and loss of appetite. In two days, these symptoms abated, but I developed a headache that persisted for three weeks, until I was put on an anti-viral med and prednisone. Just prior to being put in the meds, I noticed a slackness in the corners of my mouth that meant my mouth “leaked” when I used an oral rinse and when I tried to maintain air in my embouchure playing the trumpet. When I visited my family practitioner a day later, I was told I might have Bell’s Palsy. My doctor prescribed Valacyclovir and Prednisone. The headache and slackness in my mouth abated almost immediately after starting the meds. But when I read in the printed information for Valacyclovir that it is used to fight the chickenpox and shingles viruses, it raised a red flag. Could the Shingrix shot I received in late May be connected with the virus I got in mid-June? The timing of my getting the virus through human transmission also seemed strange since I was social distancing, avoiding crowds, and generally “lying low.” My doctor is researching the issue, but I wondered if anyone else has had a similar experience.

Jump to this post

Hello @miller1949, Welcome to Connect. You raise an interesting question. I'm not sure any member can answer it but there is another discussion on Connect that you might want to read through and post questions.

Side Effects of New Shingles Vaccine: https://connect.mayoclinic.org/discussion/side-effects-of-new-shingles-vaccine/

I did find some interesting information that sounds like what you had for side effects of the vaccine. An excerpt from the link below —
"Some researchers believe that up to a quarter of cases of Bell's palsy, a condition that causes facial paralysis, may be caused by varicella-zoster virus." — Should you get the shingles vaccine? Published: October, 2008: https://www.health.harvard.edu/newsletter_article/Should_you_get_the_shingles_vaccine

You mentioned your doctor is researching the issue. Can you let us know what you find out?

REPLY

John,
Thanks so much for the links to the discussion and the article on reactions to the shingles vaccines. I apparently contracted some form of the chickenpox/shlngles virus, as the med I took — and that knocked it out — was specifically targeted to these conditions. The question is: how did I get the virus? The article says that a study showed the possibility of my having contracted it from the vaccine is tiny (.02 percent). The other possibility, the article says, is that the virus, lying latent in my body for decades (I am 71) from when I had chickenpox as a kid, "revived" and caused the illness. (That the second coming of the virus happened so close to the time of my Shingrix shot (three weeks later) could have been coincidental!) The reason I'd like to know is because having had the first Shingrix shot (May 21), I want to know whether it is safe and advisable for me to have the second. I will let you know my doctor office says about this.

REPLY

Hi John,
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, Dr. Aaron Wilson of the American Health Network, 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,

REPLY
@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)

Jump to this post

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,

REPLY
Please login or register to post a reply.