Q: This is a follow up to your inquiry about what tests and symptoms have I had,along with the "consistent" sed rate over 100 mm. I test positive for the Anti(Ro)SSA antibody(or I did, until recently). It recently went back to "negative." I also obtain the anticardiolipin antibodies. I've been positive for that for numerous years. My Rheumatologist has taken theANCA test for vasculitis and I was negative for that particular one.
As far as doctors excluding a hidden infection, quite honestly, MOST of the
doctors I've seen, don't even bother following up on this scenario. The one
Rheumatologist I had, wanted me to see a hematologist(a couple of years ago) to
make sure it wasn't pseudolymphoma. Thank God, it wasn't at that point. He had
taken a LDH test and that was elevated somewhat. That's why he wanted me to make sure I wasn't dealing with Lymphoma/Sjogren's.
As far as symptoms go, I have the "typical" Sjogren's symptoms. Besides oral
and ocular problems, I have habitual digestive problems. My parotid gland is
somewhat enlarged. I have continual skin rashes, and problems with bumps on my ears. I'm pretty sure this is mostly related to Sjogren's. Or for that matter,
maybe the anticardiolipin antibodies. I literally can't keep up with these
I realize this is not much to go on, so naturally, you can't give me a complete
response. I'm just trying to have some idea of the possibilities. As you know,
the field of Rheumatology is a vastly difficult one. You can never pin point
the exact scenario, because these antibodies tests change all the time.
Anyhow, I thank you for trying. That means everything to me.
Answer: Did the Hematologist do a bone marrow biopsy?
I would see if your docs will order the following tests:
CRP hs = c reactive protein high sensitivity.
Quantitative Immunoglobulins- IgA, IgG, IgM, IgE immunofixation - to rule out monoclonal antibody
RF (rheumatoid factor) Indicator of immune complex formation
Cryoglobulins (notoriously difficult test for many laboratories to perform, but very helpful if positive .
C3 - indicated immune complexes are active
LDH - repeat
beta2 microglobulin and given the GI symptoms, do an H pylori.
Since your parotid glands are enlarged - I suspect the elevated ESR is due to immunecomplex activity - the question is should there be an attempt to lower them or just follow it.
I am also assuming that a urinalysis was done and did not reveal any problem there.
Dr c: Did you ever receive my previous email about the abnormal sed rate 100 mm?? You had given me some info, but requested I give you some info regarding any tests that I might have taken. My Anti(Ro)SSA antibody has been positive for the past "5" years, until recently, going back to negative. I also have the
anticardiolipin antibodies at a moderate level. At one point, one of many
Rheumatologists had tested me for a LDH test and that was somewhat elevated.
That's when he wanted me to go for a lymphoma screening. That was several years ago, though. Thank God, everything was fine at that particular time.
The ANCA test I've had done and is negative.
So there you have it. I'm still back to square one and no one seems to know
what to do next. I gather there isn't much, until there is something more
specific. Nevertheless, any info would be greatly appreciated. Don't worry, I don't hold any doctor to their opinions.
Check if the CRP was high sensitivity, and the protein in the urine is not an ongoing finding. See if your doc will check the other lymphoma markers we talked about.
You may want to consider a trial of low dose prednisone for a couple of weeks or Plaquenil for 2-3 mo to see if the ESR responds and you feel any different.
ps-consider sending the page on Lymphoma and Sjogrens fromwww.sjogrens.org (can download) to the Hematologist. WIth an incidence of 5-10%, it will help other patients if they are aware of this connection.