Behcets & Sjogrens and COVID

Posted by spankytwo2 @spankytwo2, Sep 12 7:38pm

I took first Pfizer vaccine, 24 hours later problems. Pain in side, moved under breast & sternum area. Now, on right side of waist. Doctors say neuropathy?? This started in January, is it wise to take 2nd shot. It is now September.

Hi @spankytwo2, Here's the guidance from Mayo Clinic about vaccines
– Can I get a COVID-19 vaccine if I have an existing health condition? https://www.mayoclinic.org/coronavirus-covid-19/vaccine-if-preexisting-health-conditions

Spanky, do I assume correctly that you have Behcets and Sjogrens? Have you discussed the vaccine with your rheumatologist?

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Yes. They will not comment, Good or Bad.

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Please if anyone has Behcets or Sjogrens, let me know if you had a reaction to the Pfizer vaccine.

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@spankytwo2

Please if anyone has Behcets or Sjogrens, let me know if you had a reaction to the Pfizer vaccine.

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@spankytwo2, I’m sorry for your reaction to the first Pfizer shot.

I have Sjogren’s. It manifested a couple months after a liver transplant, in August 2020, caused by another autoimmune disease. My symptoms are predominantly extraglandular. I developed hand tremors, numbness in my right leg and feet, nerve pain, and some muscle pain a few months after my surgery.

I had the first Pfizer shot in February and these symptoms increased, but reduced some after a couple weeks. As I’m immunocompromised and supportive of the need for everyone to get vaccinated, I decided to get the second shot.

My symptoms increased again and have continued to get worse. I now have numbness in all extremities and increased pain and tingling. And, recently I’ve developed intense itching on my back and legs.

I do not know if I would have eventually reached this point, but I do know the vaccine caused my symptoms to substantially rise each time. My neurologist said that he was not surprised with the reaction given that I have three autoimmune diseases.

As a liver transplant recipient I’ve been advised to get a third shot, however at this time I am declining to do so. I may consider the Johnson and Johnson vaccine, but will wait for further research. I am diligent about masking and avoid inside locations that do not require masks and inside-only restaurants. I also live in Vermont where nearly 87% of the population is vaccinated.

My neurologist initially diagnosed my Sjogren’s, given that my other autoimmune diseases can be ancillary to Sjogren’s. Labs confirmed his diagnosis. Have you been referred to a neurologist?

There is a research study starting on the effects of the vaccines on people with rheumatoid diseases, including Sjogren’s – ISTUDY21010143A – The Covid-19 Vaccine in Rheumatic Disease Patients. It’s being conducted by the University of Pittsburgh. Here’s the contact – covidcoverstudy@upmc.edu

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