Sjogren's Syndrome Support Group

thank you twistedDNA for all your helpful hints & information i can use.

yes 1winston i was diagnosed with asthma after finding out i had SS. I never had any breathing problems until i had SS. Now dry cough, cold air triggers asthma & coughin up mucus stuff. I have a humidifier in my bedroom to help with the nose dryness too. You can also use saline spray for your nose when you have a cold.

@ 1winston and midgetmom I'm glad that some of the info I have posted have helped you

Yes Texas has been better weather for s.s. I know where n. attleboro is and have a few friends there. I went to Tri-county reg. for high school. I have arthritis really bad and my rhumatologist said if I ws in colder weather I would be wose off.i do have a list of problems. But the pain from the sjogrens is so bad I may get back on plaquenil to get rid of most of the pain. I have retinitis pigmentosa also and have only 3 degrees of vision left. Plaquenil was spreading up me going blind but I felt better.. I really feel like letting myself go blind so I can feel better..

I have been told by my eye dr. about what effect Plaquenil can have on the eyes. I am worried about it but she does test my eyes every 6 months. I also go to the dentist/Periodontics every 3 months for cleanings. My work hasnot complained so far but i do make appts. either @ 8:00am or as late in the afternoon as possible. Im sorry it has already damaged your eyes & hope you are not also in pain from it.

How long were you on the Plaquenil? & when did you notice your eyes changing or was it your Dr. who discovered it? What other medication have you tried for the SS? I hope you dont mind all the questions im just trying to figure this all out. I've realized how differently it affects other people. Its a very scary disease especially knowing it gets progressively worse.

I am so grateful to be part of this support group because i wouldnt have anyone else to talk to about how it makes me feel...

Take care,

Caren

I have retinitis pigmentosa, which causes your retina to fall off basically causing tunnel vision. I was diagnosed when I was 7 . It slowly got worse. I only have three degrees of vison left, I had six degrees a few months ago. When I told my ophthalmologist about taking it, he immediately told me to come off it. I was put on methotrexate. The pills caused me stomach problems, so I am injecting it. I have already lost a couple teeth. I also see my dentist a lot. I was only on plaquenil for a couple months but it took care of most of the pain. Methotrexate is ok but nothing close to killing the pain..

hello, I live in MA. as well an am in the process of trying to firgure out if Sjogrens is what has been causing my problems, do any of you have suggestions for good Sjogrens docs in the Boston area, opthamologists, dentist, rhuem, etc. that can help in exclduing Sjogrens as a dignosis?

I have seen some Rhuems but the didnt seem to be up on the latest Sjogrens info, I have had a number of tests come back negative including:

ANA (x5 in the past year, negative)

ANCA negative

ESR (usually 1-3, highest its been is 5)

CRP usually 0.1-0.3

DSDna negative

SM ab negative

SCL-70 ab negative

SS-A & SS-B (x3 in past year all negative)

RNP ab negative

RF ab <11 range 0-15

Any doc suggestions would be greatly appreciated!