questions about Sjogrens
 

I was at my opthamologist the other day for a FU as he has been treating me for chronic dry eyes. I'm now on Restasis and this regimen is keeping the chronic blepharitis at bay, finally. He recommended that I be worked up for SS due to this and my complaints of dry mouth, which my peridontist found a change in my readings this year, indicating that this is becoming more of a problem. I have had bloodwork done for SS and that has come back normal, but the Opth. Dr. said that 30-40% of people with SS don't show up positive on the blood tests and still have it. This could also explain some of my other nerve problems aside from PN. Does anyone know which doctor I should bounce all of this off on as the Opth. Dr. indicated that he feels a lip biopsy should be done. I have my GP, neuro, or a rheumatologist to choose from, or perhaps I should consult all three, I don't know. If anyone has any thoughts about this, I'm all ears and would appreciate any guidance/info you can share.

The rheumy would be your best bet for a proper Sjogren's work up. Your ophthalmologist is correct that many with Sjogren's are sero-negative (closer to the 40% then 30%). The lip biopsy is the definitive test. Your ophthalmologist likely did a schirmer's test as well. I have negative blood work for Sjogren's, but a very biopsy lip biopsy result. The biopsy looks to see if lymphocytes have infiltrated the salivary glands. There is specific criteria as to the infiltration for a Sjogren's diagnosis. There must be at least one focus (an aggregate of 50 or more lymphocytes, histiocytes, and plasma cells) within a 4 mm sq area for a positive result. There are several doctors that can perform the biopsy (dermatologist, ENT, and oral surgeon are the most common). It's just as important to have someone with experience do the biopsy as it is the pathologist that reads it. It is not a common procedure so ask about experience. I will be honest, many times the biopsy leaves a small numb area in the lower lip and sometimes a small knot as well. They can be permanent. I have both, but they are not bothersome.

Sjogren's can explain the dry eyes, mouth, PN and many other things as well. I don't know if your ophthalmologist told you, but using a small amount of baby shampoo on a washcloth and washing around your eyes can help control the blepharitis.

If you have any questions, ask away. I'll do my best to answer. If you are on the east coast, Johns Hopkins has a good Sjogren's Center.

Thank you for responding. I've done the baby shampoo eyelash scrub, the steroid drops and gels, etc...and until he switched me to lodamax for a month along with the restasis, and then just restasis, I couldn't get away from the chronic never ending blepharitis. I still have some eye problems and pain, but at least the blepharitis is staying away now. This has been going on for a couple of years now. I hate that Restasis is the latest and greatest and most expensive and it only works as long as I use it, but it is working right now in that respect so I'm staying with it. I'll have more questions as I learn more so I'll take you up on your offer. Right now I have to get records together for the next rheumy appointment and see if he acts on it. I'd love to go to Hopkins but I'm sure my insurance would prohibit it. Do they send all the biopsies there for testing like they did when I had the punch biopsy for PN?

Yes, they can send the slides for examination/reading upon request, I'm sure. You might be surprised that your insurance could cover a visit to Hopkins. It's not like it use to be where we had to stay within a certain radius. The Sjogren's Center does take some time & leg work out to get in...like most elite places.

Thank you, thats good to know. I have an appointment in a week and half with my rheumatologist and I've already got some of the records I need. I'll just have to get to two other doctors offices to get the remaining ones ahead of time and I should be good to go. I'll post his thoughts after my visit with him.

Thank you for responding. So far all bloodwork for RA has been negative. I have been having joint pain recently though and I will tell him about it. I experienced what I think may have been a migraine which included vomiting and I'm still having some pain from it. I'm not prone to migraines and I'm heading to the doctors in a little bit here. I seem to be falling apart lately.

I saw the doctor this morning and he feels there is sufficient basis for ordering the lip biopsy. He said that if it is positive, it would explain some things medically, in my case which seems to so far have a bunch of doctors stumped. Anyway, they are scheduling everything and will call with appointments and such so I just need to wait to hear from them.

Good. Glad to hear they will do the biopsy and maybe get you some answers. Please keep us posted.

Lip biopsy results
 

The ENT's office called that did the biopsy. They said that the results show chronic inflammation and they are deferring to my rheumetologist for further direction. I don't see him for a week or so. Does anyone know what this means?