1. < Neuropathy

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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amyd67 | @amyd67 | Aug 1, 2021
In reply to @littlenoise "That didn't last long... Tingling/numbness returned to my feet Friday afternoon very lightly. By Saturday, all..." + (show)
@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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Same here. While on it I felt a great improvement, but came right back as dosage went down. Started gabapentin, same. Temporary relief until dosage starts wearing off. I’m going to try the CBD creams.

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1 reply
dhamil | @dhamil | Aug 1, 2021
In reply to @sueinmn "Sorry to hear prednisone wasn't a quick cure for you, but hopefully it calmed the nerves..." + (show)
@sueinmn

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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Thanks Sue.

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dhamil | @dhamil | Aug 1, 2021
In reply to @amyd67 "Same here. While on it I felt a great improvement, but came right back as dosage..." + (show)
@amyd67

Same here. While on it I felt a great improvement, but came right back as dosage went down. Started gabapentin, same. Temporary relief until dosage starts wearing off. I’m going to try the CBD creams.

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Hopefully the CBD cream will be the answer for you! I am interested in doing the same but have no idea where to start. I need to educate myself on it. I take 600mg gabapentin 3X a day. But doesn’t help enough.

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littlenoise | @littlenoise | Aug 1, 2021
In reply to @sueinmn "Sorry to hear prednisone wasn't a quick cure for you, but hopefully it calmed the nerves..." + (show)
@sueinmn

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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Thanks.

Yeah. I'll send him a portal message after I've finished the course so I can provide a complete report and see what he suggests.

I'm not giving up the fight!

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1 reply
littlenoise | @littlenoise | Aug 1, 2021

I was using some CBD cream for arthritic knees for a while. The results weren't drastic enough for me to use it on the regular. I hadn't even thought to try it for this. I'll have to give it a whirl.

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Mentor
Sue, Volunteer Mentor | @sueinmn | Aug 1, 2021
In reply to @littlenoise "Thanks. Yeah. I'll send him a portal message after I've finished the course so I can..." + (show)
@littlenoise

Thanks.

Yeah. I'll send him a portal message after I've finished the course so I can provide a complete report and see what he suggests.

I'm not giving up the fight!

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Great idea. I love having the info on my patient portal so I can refer back to it, and see exact dates, etc.
Sue

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polywog | @polywog | Aug 1, 2021
In reply to @minnesotadave "Can anyone tell me if any data now exists as to which brand of Covid vaccine..." + (show)
@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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Hi. Personally I have been waiting for approval of a traditional vaccine. NovaVAX phase 3 clinical trial results came out at the end of June. Dr Mobeen Syed Analyzed the results in a YouTube video which was very informative. Here is the trial data From new England journal of medicine
https://www.nejm.org/doi/full/10.1056/NEJMoa2107659

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1 reply
Mentor
Sue, Volunteer Mentor | @sueinmn | Aug 1, 2021
In reply to @polywog "Hi. Personally I have been waiting for approval of a traditional vaccine. NovaVAX phase 3 clinical..." + (show)
@polywog

Hi. Personally I have been waiting for approval of a traditional vaccine. NovaVAX phase 3 clinical trial results came out at the end of June. Dr Mobeen Syed Analyzed the results in a YouTube video which was very informative. Here is the trial data From new England journal of medicine
https://www.nejm.org/doi/full/10.1056/NEJMoa2107659

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Thank you for the link. Once again, this shows the effectiveness of the vaccine, and the rarity of significant adverse reactions. The numbers reported in the article look very similar to those reported in the other 3 vaccine trials. I'll look for those articles when my time permits.
Sue

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lk61 | @lk61 | Aug 1, 2021
In reply to @sueinmn "Thank you for the update. I have chronic inflammation, experienced a huge flare with the Pfizer..." + (show)
@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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@sueinmn could you share how long after vaccine you took prednisone? I’ve seen several people refer to taking prednisone to calm down the immune response. My neurologist also offered it to me, for my 2nd shot, but I turned it down as I didn’t want to inhibit the vaccine from actually working. I hope people realize that prednisone is a powerful immunosuppressant. I wouldn’t think taking it right at the time of the shot would be advisable as I’ve even seen some literature advising people not to take ibuprofen or other NSAIDS unless absolutely necessary, for the same reason. But I would think after the shot has had time to “do it’s thing”, maybe? So about how long?

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1 reply
Mentor
Sue, Volunteer Mentor | @sueinmn | Aug 1, 2021
In reply to @lk61 "@sueinmn could you share how long after vaccine you took prednisone? I’ve seen several people refer..." + (show)
@lk61

@sueinmn could you share how long after vaccine you took prednisone? I’ve seen several people refer to taking prednisone to calm down the immune response. My neurologist also offered it to me, for my 2nd shot, but I turned it down as I didn’t want to inhibit the vaccine from actually working. I hope people realize that prednisone is a powerful immunosuppressant. I wouldn’t think taking it right at the time of the shot would be advisable as I’ve even seen some literature advising people not to take ibuprofen or other NSAIDS unless absolutely necessary, for the same reason. But I would think after the shot has had time to “do it’s thing”, maybe? So about how long?

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After the shingles vaccine I just toughed it out, until I ended up in pain management to regain my moblilty, and vowed not to do that again! A year later, it was 10 weeks after the flu shot as clinics were still only sort of open. With the Pfizer, I waited 8 weeks to be sure I got full immune response, it was probably another week to get the meds.
Sue

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