Behcets & Sjogrens and COVID

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?

Yes. They will not comment, Good or Bad.

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

@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

Are you still having issues with the tremor?