Shingrix and peripheral neuropathy

Posted by joannerhodes @joannerhodes, Feb 1, 2019

4 days after my 2nd Shingrix vaccination, I suddenly developed intense peripheral neuropathy in both feet…for the first time in my life…anyone else?

@chicosalt

Sorry to hear this, Jim. I finally got to ask my neurologist about any potential connection between Shingrex and neuropathy; with a good explanation than I can't totally remember and/or provide. But basically he said that shingles is caused by a virus and neuropathy is a nerve disorder- totally different mechanisms at play- and that I should get the shots.
Still wary. Your story makes me even more nervous..
Thanks for sharing. Hope your burning settles!
Lori in CA

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@chicosalt Welcome to connect I wanted to tell you I had my first Shingrex shot about 2months ago didn't have any side effects Everyone is different I go for my 2nd in June

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Of course the docs (big pharma tools) said the vaccine is safe. Do some research. If Shingrex has mercury or aluminum, they are neurotoxins. I wouldn't be surprised if they don't contain some neurotoxin that causes neuropathy.
https://thevaccinereaction.org/2018/09/new-supercharged-shingles-vaccine-has-serious-problems/
https://www.dmlawfirm.com/shingles-vaccine-toxic-ingredients/
http://vaxtruth.org/2012/01/aluminum-toxicity-and-a-primer-on-the-vic/

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@chicosalt

Sorry to hear this, Jim. I finally got to ask my neurologist about any potential connection between Shingrex and neuropathy; with a good explanation than I can't totally remember and/or provide. But basically he said that shingles is caused by a virus and neuropathy is a nerve disorder- totally different mechanisms at play- and that I should get the shots.
Still wary. Your story makes me even more nervous..
Thanks for sharing. Hope your burning settles!
Lori in CA

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Thanks for the kind words Lori. My PCP explained that Shingrix is an extremely 'active' (potential for lots of side-effects) vaccine and that an autoimmune response is always possible. He also said that he thinks that these sensations might eventually go away if they are from the vaccine. My wife got the vaccine at the same time with no problems beyond a very sore arm.

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I had an onset of neuropathy in both feet right after the first Shingrix shot. Never had this before. It has been 8 months now and I would like to know if there Are reports of improvement or diminishing symptoms.

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@memomsloan

I had an onset of neuropathy in both feet right after the first Shingrix shot. Never had this before. It has been 8 months now and I would like to know if there Are reports of improvement or diminishing symptoms.

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To expand a bit, the neuropathy involves my feet and legs. It wakes me at night and it feels like creepy/crawly things under my skin. My legs ache and are painful. As soon as I get out of bed and on my feet, all the symptoms disappear. I am taking two medications now, Gabapentin and Amitriptyline, in order to help with the very disordered sleep. I was awakening every 90 minutes all night prior to the medications. The Gabapentin has reduced the creepy/crawly sensations under the skin of my calves. I will not get the 2nd shot of Shingrix. I also understand shot #1 and #2 are exactly alike and that the first shot gives 85% immunity. Is any place gathering this information to have it reported to the CDC?

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@memomsloan

To expand a bit, the neuropathy involves my feet and legs. It wakes me at night and it feels like creepy/crawly things under my skin. My legs ache and are painful. As soon as I get out of bed and on my feet, all the symptoms disappear. I am taking two medications now, Gabapentin and Amitriptyline, in order to help with the very disordered sleep. I was awakening every 90 minutes all night prior to the medications. The Gabapentin has reduced the creepy/crawly sensations under the skin of my calves. I will not get the 2nd shot of Shingrix. I also understand shot #1 and #2 are exactly alike and that the first shot gives 85% immunity. Is any place gathering this information to have it reported to the CDC?

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Hello @memomsloan, Welcome to Connect. I'm sorry to hear about your symptoms. I have not yet had the Shingrix shot but have been thinking about it. I already have small fiber peripheral neuropathy and do not want to deal with another condition like shingles. Your symptoms sound similar to Restless Leg Syndrome (RLS). There is another discussion you may want to join in on RLS.

> Groups > Sleep Health > Restless Leg Syndrome
https://connect.mayoclinic.org/discussion/restless-leg-syndrome-2a74e5/

Mayo Clinic – Restless Leg Syndrome – Symptoms & Causes
https://www.mayoclinic.org/diseases-conditions/restless-legs-syndrome/symptoms-causes/syc-20377168

Here's what the CDC has to say about the Shingrix Vaccine:

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

You mentioned taking medications for the symptoms. Have you been diagnosed with neuropathy?

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@johnbishop

Hello @memomsloan, Welcome to Connect. I'm sorry to hear about your symptoms. I have not yet had the Shingrix shot but have been thinking about it. I already have small fiber peripheral neuropathy and do not want to deal with another condition like shingles. Your symptoms sound similar to Restless Leg Syndrome (RLS). There is another discussion you may want to join in on RLS.

> Groups > Sleep Health > Restless Leg Syndrome
https://connect.mayoclinic.org/discussion/restless-leg-syndrome-2a74e5/

Mayo Clinic – Restless Leg Syndrome – Symptoms & Causes
https://www.mayoclinic.org/diseases-conditions/restless-legs-syndrome/symptoms-causes/syc-20377168

Here's what the CDC has to say about the Shingrix Vaccine:

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

You mentioned taking medications for the symptoms. Have you been diagnosed with neuropathy?

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I promise to go back and read in detail the CDC info. But, to answer several other questions, I entered this rabbit hole thinking I had Restless Leg Syndrome (RLS). The first symptoms of RLS came up the day I had Shingrix #1. I had a Sleep Study which showed I had no RLS or apnea. Gabapentin was started at this point. My next stop was with a Neurologist who did an EMG which showed I had Idiopathic Peripheral Neuropathy. Amitriptyline was added now. I look forward to getting more responses. What I hope for is the neuropathy could be self limiting and resolve, maybe slowly.

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People have reactions to ALL kinds of things – natural and man-made. Because some people have reactions to vaccines doesn't make those vaccines bad for everyone.

My husband cannot take Ibuprofen because it causes sciatic nerve pain. He didn't reach this conclusion due to a one time experience and association between taking Ibuprofen and sciatica – it happened multiple times before he said 'Yup – there's a definite link, and I'm not taking this medication any more'. No more sciatica.

I wish I could figure out what causes my eczema to act up. I have almost no rash, but the itch (nerve reaction) is absolutely crazy-making!!!

I've never had shingles, but my understanding is that it can cause permanent nerve damage (aka chronic pain), and if it happens to impact your face – you may end up blind as well.

For those weighing whether to have the vaccination – I urge you to get your information from reputable websites and avoid anti-vaxxer sites.

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@memomsloan

I didn't notice any side effect from the shingles vaccine. I started taking Imipramine a couple of months ago, after having tried a very long list of medications that either did nothing or had unacceptable side effects. Many people find relief from Gabapentin and numerous other neuropathy meds. What dose are you taking of Gabapentin?

I know from a lengthy history that it usually takes six weeks to give a medication time to take effect. Sometimes the side effects may show up sooner than six weeks and they could be serious enough to warrant stopping before six weeks.

It will be great if the neurologist can offer you good information..

Jim

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Good advice about anti-vaxxers!
FYI, facial shingles rarely effects the eyes. If the shingles rash is on the tip of the nose, then it might. See your ophthalmologist asap.

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@jimhd

@memomsloan

I didn't notice any side effect from the shingles vaccine. I started taking Imipramine a couple of months ago, after having tried a very long list of medications that either did nothing or had unacceptable side effects. Many people find relief from Gabapentin and numerous other neuropathy meds. What dose are you taking of Gabapentin?

I know from a lengthy history that it usually takes six weeks to give a medication time to take effect. Sometimes the side effects may show up sooner than six weeks and they could be serious enough to warrant stopping before six weeks.

It will be great if the neurologist can offer you good information..

Jim

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The Neurologist has been very helpful. I have been on the Gabapentin since 6/18, 5 months and the Amitriptyline since 8/8, 3 months. I have been patient with following my regime and try not to knee jerk my changes. I take 300 mg of Gaba at bedtime and repeat x1 at about 2-3 a.m. I take the Amitriptyline 25 mg at about 6 p.m. as it has a longer half life. My sleep is going well now. Will I always have to take these meds? Gabapentin 600 mg slow release is very expensive, $450/mon, so I will stick with the 300 mg x 2. So, back to my original thought, could this be self resolving? I know many friends who have had no side effects from the Shingrix shots, but I also know several others who have had different and milder symptoms.

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@jeffrapp

Good advice about anti-vaxxers!
FYI, facial shingles rarely effects the eyes. If the shingles rash is on the tip of the nose, then it might. See your ophthalmologist asap.

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Thanks for the clarification. I have heard it's rare to affect the eyes – but still a potential problem that people should be aware of.

I'm one of those people who often *thinks* about getting the vaccine, but so far haven't gotten around to it. I should giddy up and getter done!

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