APS and COVID Vaccine thoughts - Hughes Syndrome A...

Hughes Syndrome APS Forum

10,002 members10,207 posts

APS and COVID Vaccine thoughts

Medical2021- profile image

Hello I’m new here. And recently been told after having APS for over 26 years that I no longer have it. That my Critical Care Provider didn’t perform the correct tests because now the tests are negative. How does APS just disappear? And my present Hematologist says I do have a clotting disorder but can’t tell me the name of it. Anyone’s thoughts on getting the COVID 19 vaccine with diagnosis.

10 Replies

“And my present Hematologist says I do have a clotting disorder but can’t tell me the name of it.”

Hmm - I’d run … very far away and find someone else!!🤦‍♀️

HollyHeski profile image
HollyHeskiAdministrator

Hi and welcome, APS is incurable but can be managed. Antiphospholipid antibodies can come and go or increase and decrease. I'm hoping at least you are still on anticoagerants?

Regarding covid vaccine, here in the U K we are advised to get the vaccine, as the consequences of getting Covid out weigh the small chance of clotting from the vaccine. Many on here have shared their views on the vaccines- may be worth you going through the previous posts.

Again welcome

As Holly said, APS antibodies levels fluctuate. They can increase, decrease, and go back to normal levels, but it doesn't go away. The risk of clotting is still there. Additionally, if you've been tested by different providers or the same provider is using a new lab, the differences in antibody levels being positive or negative for APS may be due to the assay that lab is using to measure the levels. At least in the US, that's the case. I don't know if only one test is used in the UK. Either way, I'd seek a second opinion and clarification.

As for the covid vaccine, it is recommended to get it. I have APS and have had the Pfizer vaccine and booster and no issues other than the expected fatigue, a night of chills, and some sore lymph nodes. Of course, take into consideration your whole health picture and check with your primary care provider if you have any concerns.

I too have been told that my APS diagnosis was either wrong and I never had it, or, have left that disease as my numbers are now, " boring." I switched hematologists immediately. ( The " boring" hematologist was a replacement when the one who had managed my APS for years retired.) Here in my state, hematologists also cover a lot of cancer patients and a consult with a cancer patient brings in, I have been told, a lot more money. Also, autoimmunity follows both a pre-disposition AND a personal trigger. And whats the trigger? ??? So. Your APS antibodies may ebb, (good) then come roaring back ( bad) for unknown, possibly bizarre reasons. So... once APS, always APS. Yes, do run , RUN into a different doctor practice.

And do get the shot. A friend who had APS plus fibromyalgia avoided the shot for fear of having a clot reaction. She died last year due to covid.

MaryF profile image
MaryFAdministrator

You do need a specialist who fully understands this disease, many of us go in and out of positive/negative testing, the disease does not go away. MaryF

Get a new hematologist and primary

Hi , im fully vaccinated, I’ve had 3 shots Pfizer. A small bit of tiredness after the 1st one. Other than that, perfectly fine.

I agree with everyone here. My numbers have changed and once become "insignificant" as in under the line at which an autoimmune disorder is recognized. but it was and is not gone. But may you have more wonderful days when you feel well!

and I meant to say that yes, my doctor said to vaccinate and boost. We have an autoimmune disorder that could be disastrous when met with covid.

You can have a negative test and still have APS. 2% of population will show this. I’m one who did. I’ve had 9 clots with other symptoms. I’m like you though, it just doesn’t disappear.

You may also like...