COVID vaccines and neuropathy

Posted by cue @cue, Feb 15, 2021

I am 85 with small fiber neuropathy that is getting worse. My neurologist thought it would be a good idea for me to wait with the covid vaccine and not be first in line to see how it affected other people with neuropathy. Probably because it is a new technology. Has anyone had a problem with neuropathy after receiving the vaccine? If so, which vaccine?

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Update:

I almost feel bad reporting this good news since so many of you are continuously suffering.

Prednisone seems to be helping. After only 2 days of taking 60 mg daily (still have 5 days to go), I can feet my feet! I weirdly have tightness in my upper calf (that's new), but very little lingering tingling or numbness in my feet.

Still don't know the root cause. Could be pinched nerve, inflammation from vaccine, etc. Either way, knowing it can reverse is amazing. I was fearful that whatever was happening was permanent and would only continue to crawl up my legs and worsen.

Thank you for the support. I'll continue to update as I finish my week of prednisone.

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@littlenoise

Update:

I almost feel bad reporting this good news since so many of you are continuously suffering.

Prednisone seems to be helping. After only 2 days of taking 60 mg daily (still have 5 days to go), I can feet my feet! I weirdly have tightness in my upper calf (that's new), but very little lingering tingling or numbness in my feet.

Still don't know the root cause. Could be pinched nerve, inflammation from vaccine, etc. Either way, knowing it can reverse is amazing. I was fearful that whatever was happening was permanent and would only continue to crawl up my legs and worsen.

Thank you for the support. I'll continue to update as I finish my week of prednisone.

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Thank you for the update. I have chronic inflammation, experienced a huge flare with the Pfizer vaccine, and had the same experience - prednisone calmed it down.
Sue

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Can anyone tell me if any data now exists as to which brand of Covid vaccine is most likely to cause neuropathy symptoms or make existing ones worse?

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@minnesotadave

Can anyone tell me if any data now exists as to which brand of Covid vaccine is most likely to cause neuropathy symptoms or make existing ones worse?

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I believe it’s a mix. I was an early poster on this discussion. I had Pfizer. If you go through the discussion you can get a sense of the numbers for each vaccine.

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@minnesotadave

Can anyone tell me if any data now exists as to which brand of Covid vaccine is most likely to cause neuropathy symptoms or make existing ones worse?

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Hello, I just looked again at the VAERS data for your answer.
Based on reporting of neuropathies of all types in VAERS, and the number of vaccine doses given so far it appears that the mRNA vaccines are safer with a report of about 3.1-3.4 cases of neuropathy per million injections while Johnson & Johnson reports about 12 cases per million injections (even assuming vast underreporting, that's very rare).

By contrast, about 10% - 20% of hospitalized Covid patients experience neuropathy, with those who have a prior history more likely to have symptoms. 2,380,000 people have been hospitalized of 34,700,000 infected, resulting in somewhere between 200,000 - 450,000 cases of neuropathy.

I did the math - chances of this complication, as an unvaccinated person, is 75-150 chances in a million. That is at least 20 to 40 times higher than getting the vaccine. (11% chance of getting Covid, times a 7% chance of hospitalization times a 10-20% chance of new worse neuropathy)

Keep in mind there are dozens of other potential long-term effects from Covid as well, and those increase and worsen with every health condition you have. And the Delta variant is ramping up, sending more and younger people to the hospital, and we have no idea what those long-term effects will be yet.

Does any of this help with making your decision?

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@sueinmn

Hello, I just looked again at the VAERS data for your answer.
Based on reporting of neuropathies of all types in VAERS, and the number of vaccine doses given so far it appears that the mRNA vaccines are safer with a report of about 3.1-3.4 cases of neuropathy per million injections while Johnson & Johnson reports about 12 cases per million injections (even assuming vast underreporting, that's very rare).

By contrast, about 10% - 20% of hospitalized Covid patients experience neuropathy, with those who have a prior history more likely to have symptoms. 2,380,000 people have been hospitalized of 34,700,000 infected, resulting in somewhere between 200,000 - 450,000 cases of neuropathy.

I did the math - chances of this complication, as an unvaccinated person, is 75-150 chances in a million. That is at least 20 to 40 times higher than getting the vaccine. (11% chance of getting Covid, times a 7% chance of hospitalization times a 10-20% chance of new worse neuropathy)

Keep in mind there are dozens of other potential long-term effects from Covid as well, and those increase and worsen with every health condition you have. And the Delta variant is ramping up, sending more and younger people to the hospital, and we have no idea what those long-term effects will be yet.

Does any of this help with making your decision?

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That was very helpful, all I could ask for, thank you! I bet you were an ace in debates!

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@sueinmn

Thank you for the update. I have chronic inflammation, experienced a huge flare with the Pfizer vaccine, and had the same experience - prednisone calmed it down.
Sue

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Thanks!

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@sueinmn

Thank you for the update. I have chronic inflammation, experienced a huge flare with the Pfizer vaccine, and had the same experience - prednisone calmed it down.
Sue

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Hi, I was wondering how much prednisone and how long you take it for your flares? My doctor suggested the 6 day Medrol dose pack.

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That didn't last long...

Tingling/numbness returned to my feet Friday afternoon very lightly. By Saturday, all sole of foot tingling and numbness is back except, thankfully, the intense burning. I've also got a strange hot spot on the outside of my right thigh and tightness in my upper calves.

I took prednisone 60 mg daily for 3 days beginning Wednesday, so Friday was the last 60 mg day. Saturday was a 40 mg day, today is a 40 mg day. I'll be down to only 20 mg on Monday & Tuesday.

Since I KNOW there was improvement,
I'm just hoping that this is a minor setback or I can go on an increased dosage to finally eliminate it.

So weird how the body works.

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@littlenoise

That didn't last long...

Tingling/numbness returned to my feet Friday afternoon very lightly. By Saturday, all sole of foot tingling and numbness is back except, thankfully, the intense burning. I've also got a strange hot spot on the outside of my right thigh and tightness in my upper calves.

I took prednisone 60 mg daily for 3 days beginning Wednesday, so Friday was the last 60 mg day. Saturday was a 40 mg day, today is a 40 mg day. I'll be down to only 20 mg on Monday & Tuesday.

Since I KNOW there was improvement,
I'm just hoping that this is a minor setback or I can go on an increased dosage to finally eliminate it.

So weird how the body works.

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Sorry to hear prednisone wasn't a quick cure for you, but hopefully it calmed the nerves enough to let healing begin. Will you to let your doctor know if full symptoms return? Sometimes a low dose (like 10 mg/day) is used for a longer time.

@dhamil - My doctor and I have settled on a slightly different solution than the Medrol dose packs. For inflammatory flares, we generally do 40mg of prednisone for 7 days, and if the symptoms have lessened, 20 mg for 7 more days, then stop. If not, we consult on a longer course of treatment. For exacerbations in my lungs, it is 5 days of 40mg prednisone and 5 days of 20mg, if it doesn't resolve, we consult.

Sue

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