false negatives because of long term steroiduse

[someqs17]

Hi All,

I have had addison's disease for about 15 years and have been on replacement hydrocortisone and florinef since.  Because of my long-term steroid use, which I can and never will be able to avoid, I am concerned that when I get antibody tests for other illnesses/conditions, they will be false negative. There is a lot of information that states that steroid use can cause antibody tests to be false negative. This is because steroids suppress the antibody response and can cause less antibodies in the bloodstream. This doesn't mean you still don't have 'said' disease, just that your blood test won't show it.

I wanted to find out if anyone has experienced false negative blood tests w/ other illnesses or has had a hard time getting dx'ed because of the steroids.  Now, we are on replacement steroids, but I have asked about 10 doctors about what the impact would be and NEVER get a straight answer. They really just don't know...and even really good doctors.

I can't be the only one that has dealt with this. Anyone have any experience?

[rumpled]

It was a rheumy and an endo that said it.
I had Cushing's so I made a lot of high dose steroids and self-dosed. When that finally got resolved, a lot of issues that previously had not been a problem suddenly became a problem and I am left with a myasthenia gravis like thing - muscle weakness etc.

Replacements are not as accurate as the real thing so it can really throw the body off. I know for certain that I am immunocompromised and so do my docs - even if not for the meds they should call it for the reason you are taking the dang meds!

[someqs17]

No it sure doesn't! Its a big problem...because you can't get things properly dxed, or any reassurance that you don't have something! Was it an endo who said that ur antibody tests wouldn't be as accurate as someone off meds? I've had some endos tell me I should make antibodies bc the steroids are replacement and I am not immunocompromised. Oye...no answers!

[rumpled]

I have some doctors that are a bit more savvy and at least one has said that with my corticosteroid medications, my antibody tests would not be as accurate given the meds.

I totally agree that the steroids mess with everything - and that they don't really study the effect (it would be rather hard?) of tests on people off and on steroids...

I know that I have many auto-immune diseases and several docs call me special (grrr) and some even went so far as to say the tests for me have not been developed - but that does not help - does it...