COVID_19 Vaccines and RLS : Hi. I have... - Restless Legs Syn...

Restless Legs Syndrome

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COVID_19 Vaccines and RLS

rls_gjm profile image

Hi. I have had 4 Pfizer Vaccines and 1 Moderna Vaccine and after every vaccination it has triggered off my RLS.

Has anyone else noticed this? Maybe it is an unnoticed side effect?

I currently use 3mg/24hr Rotigotine Patches and even they struggle to help after the vaccines..

Any tips or personal experience would be appreciated!

Thanks,

Gary

32 Replies

After an extremely bad reaction to my first covid vaccine (Astra zeneca) I have had 3 Pfizer and after each one I noticed worsening of foot neuropathy which eventually improved. I have lifelong severe RLS and developed the neuropathy 2 years ago. As both of these are neurological conditions it would seem the Pfizer vaccine is to blame. My haematologist had heard of the connection and advised it was better to get vaccinated anyway. Hope this helps.

rls_gjm profile image
rls_gjm in reply to Jelbea

Thank you for your reply. This is in someway comforting to know I am not the only one to notice the side effect.

I had them slightly with the Phizer but a lot more with Moderna.

lorrinet profile image
lorrinet in reply to Jelbea

Are you going to continue having these vaccines?

Jelbea profile image
Jelbea in reply to lorrinet

Hi Lorrinet - Yes I think I will be continuing to get them. I have a type of blood cancer and therefore this means I am immunosuppressed because of the chemo capsules I take every day. If I developed covid I would probably have much less of a chance of surviving. Also I am 80 yo. The neuropathy has settled each time and I do not get many other side effects from the vaccine - just a sore arm.

It is a known reaction to the vaccine in some. Have You thought about coming off the Rotigotine Patch and switching to gabapentin because up to 70% of people on it will eventually suffer from augmentation which believe me you don't want? Also have you had your ferritin tested?

rls_gjm profile image
rls_gjm in reply to SueJohnson

Thank you for your reply. After checking my health record, the last time I had my ferritin level checked was in 2019 and it was 128 ug/L.

In regards to gabapentin, I currently have that on my repeat prescription to treat shingle pain. The dose is 300mg 3 times a day. What is the correct dose to treat RLS?

Gary

SueJohnson profile image
SueJohnson in reply to rls_gjm

It won't fully help until you are off the patch. Would you consider going off the patch?

rls_gjm profile image
rls_gjm in reply to SueJohnson

I'm just scared to because the feeling of RLS is unbearable. How long would the gabapentin take to work and what dose?

SueJohnson profile image
SueJohnson in reply to rls_gjm

Understood. It would be difficult but in the long run it would be worth it. To come off the patch, you would need to get the 1 mg patch and cut it in quarters and then reduce by one quarter every 2 weeks or so. You will have increased symptoms. You may need to reduce more slowly or with a smaller amount. Wait until the increased symptoms from each reduction has settled before going to the next one. You will suffer and may need a low dose opioid temporarily to help out with the symptoms especially as you near the end.. But in the long run, you will be glad you came off it. On the gabapentin, beginning dose is usually 300 mg gabapentin which you are already on . It won't be fully effective until you are off the patch for several weeks. After that increase it by 100 mg every couple of days until you find the dose that works for you. Take it 1-2 hours before bedtime. If you need more than 600 mg take the extra 4 hours before bedtime as it is not as well absorbed above 600 mg. If you need more than 1200 mg, take the extra 6 hours before bedtime. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin daily." If you take magnesium take it at least 3 hours before taking gabapentin as it will interfere with the absorption of the gabapentin. Check out the Mayo Clinic Updated Algorithm on RLS which will tell you everything you want to know including about its treatment and refer your doctor to it if needed as many doctors do not know much about RLS or are not uptodate on it as yours obviously isn't or s/he would never have prescribed a dopamine agonist at

Https://mayoclinicproceedings.org/a...

rls_gjm profile image
rls_gjm in reply to SueJohnson

Wow lots of information to get through here. Thank you so much for your assistance! I'll have a chat with my GP and take it from there.

I thought Neupro was used to treat RLS?

SueJohnson profile image
SueJohnson in reply to rls_gjm

It used to be the first line treatment for RLS but no longer is because of the danger of augmentation.

rls_gjm profile image
rls_gjm in reply to SueJohnson

Thank you so much for your help and better understanding. It really has been useful. Do you know of any other medication that can worsen symptoms of RLS?

SueJohnson profile image
SueJohnson in reply to rls_gjm

There are tons of them. Are you taking any other medicines or over the counter supplements?

rls_gjm profile image
rls_gjm in reply to SueJohnson

Well I suffer from Cystic Fibrosis and Diabetes. No over the counter medications though.

SueJohnson profile image
SueJohnson in reply to rls_gjm

Are you taking any medicines for your diabetes and cystic fibrosis?

rls_gjm profile image
rls_gjm in reply to SueJohnson

Yes, multiple medications.

If you list them, I can tell you if any make RLS symptoms worse and if so perhaps give you a safe substitute.

rls_gjm profile image
rls_gjm in reply to SueJohnson

Oh and Kaftrio for Cystic Fibrosis

Alendronic Acid Atorvastatin

Azithromycin

Bambuterol

Calcichew

Carbocistein

Cefradine

Co amoxiclav

Colecalciferol

Creon 25,000

Doxazosin

Fiasp injection

Ferrous Sulfate

Fexofenadine

Fluoxetine

Gabapentin

Ibuprofen

Lansoprazole

Loperamide

Montelukast

Prednisolone

Ramipril

Rotigotine

Salbutamol

Sodium chloride tablets

Solpadol

Tresiba injection

Uniphyllin continus

Ursodeoxycholic acid

SueJohnson profile image
SueJohnson in reply to rls_gjm

WOW ! For someone 33 years old you sure are taking a lot of medicines. Fexofenadine is an antihistamine that exacerbates RLS in many. Instead you could take cetirizine, Xyzal or Allegra which are safe for RLS. Fluoxetine is antidepressant which exacerbates RLS symptoms in most. A safe substitute is trazodone which actual helps some peoples RLS . Lansoprazole, a proton pump inhibitor interferes with the absorption of iron but your ferritin is OK so that probably isn't a problem. Prednisolone is a statin and unfortunately there is no safe substitute.

SueJohnson profile image
SueJohnson in reply to rls_gjm

Wait a second - let me check fexofenadine further - I have another name for it as allegra.

OK - just checked. fexofenadine is OK and is the same thing as allegra. Allegra-D however is not OK.

rls_gjm profile image
rls_gjm in reply to SueJohnson

Thank you so much for this Sue, it's really appreciated!

rls_gjm profile image
rls_gjm in reply to SueJohnson

I also take inhaled Colomycin and DNase as well.

I noticed no difference I had 2 Astra Zeneca and one Modera vaccine.No side affect with all of them.

rls_gjm profile image
rls_gjm in reply to landdebbie

That's fantastic!

I had some RLS reaction to my first (Pfizer) vax. Same, but worse, for shingles vax. Similar for flu vax. Common thread is the body's inflammatory response to vaccination. It settled in 1 day.

rls_gjm profile image
rls_gjm in reply to PoorRichard

Hmm maybe it could be something to do with the quantity of medication I'm already on.

I’ve had three Pfizer shots and didn’t really notice any impact to RLS. Sorry that happened to you but I’m glad to hear you still plan to stay up to date on your vaccinations.

rls_gjm profile image
rls_gjm in reply to Guitarpickin

Absolutely! Being vulnerable I do not fancy being locked away again! 🙂

Yes! Maybe so. Don’t remember about previous shots, but I just had my 4th Pfizer one on July 27, and yesterday was terrible (starting almost exactly 24 hrs. after shot) and today is not great either. This time I’m in the process of cutting back on Pramipexole, whereas for the previous 3, I was not doing so. Previous 3 were between Apr. & Dec. 2021 and were all Pfizer. I too have Neuropathy in feet and legs, and had wondered about it being related to RLS or caused by the long-term taking of Pramipexole, but not to the Covid vaccine. It definitely preceded any of the vaccines I’ve had.

RestlessC profile image
RestlessC in reply to RestlessC

Above should read “June 27”!

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