I just returned from a visit with the rheumatologist, who very patiently listened as I told her that the dryness (eyes/nose/mouth) is getting worse, and that I now seem to have mild issues with swallowing too. I told her that, while I have occasional aches and pains, it's not constant. But I think I forgot to mention the fatigue -- how I am tired even when I get adequate sleep; and how I'm completely wiped out by 10 pm every night. (I used to be able to stay up into the wee hours of the morning.)
Anyway, she told me that for Sjogren's Syndrome, she usually just treats symptoms (e.g., prescribing Salagen or Evoxac for dryness) but does not typically prescribe the kind of systemic medications that someone with rheumatoid arthritis or lupus would receive. I was a little confused, because I've read many times that one of the benefits of early diagnosis is that, with treatment, some of the salivary/tear gland destruction can be prevented. I assumed that this meant Plaquenil or something similar.
I wish I had asked her this -- whether it's advisable to start Plaquenil early (even before there is serious joint pain) to prevent further damage to the glands; or if it shouldn't be taken until there are more systemic manifestations. (I was hesitant to ask too much about Plaquenil, because I'm a little freaked out by the possible retinal toxicity.) I'm wondering if there's something I should be taking/doing now, to try to prevent the dryness from worsening further.
I don't have a Sjogren's diagnosis yet. The rheumatologist said she's calling it sicca syndrome for now, and said she hesitates to label people with autoimmune illnesses prematurely because it can cause problems for them with insurance. I have a positive ANA (1:160, nucleolar), but previously tested negative for SSA/SSB and had a negative lip biopsy this summer. The rheumatologist took blood to retest SSA and SSB today.
Hi
I suggest Evoxac or Salagen for dry mouth. That, at a minimum, follows with your rheumys track of treating symptoms. Many of us self treat with supplements of Moega 3s and Vit D and other vitamins.
Plaquenil is a well tolerated treatment that helps most with joint/muscle pain/fatigue. I have been taking it for over 15 years with no downsides. May be wrong but I consider it quite benign. It has worked for me who had serious muscle/joint pain as a manifestation of the disease.
My own personal dividing line is if I have to have periodic blood tests to monitor the impact of the drug it may be too strong.
This is really helpful -- thank you. Do you think that Plaquenil helped to slow down the progression of dryness for you? Or do you know if it is thought to do that? I usually Google things obsessively, but in my sleep-deprived state today I can't seem to find the answer. Thank you again.