I have been diagnosed with SLE for about 12 years. In the last couple of years, I have had increased problems with dry mouth and dry eyes. So, my rheumatologist thinks I have secondary sjogren's, but doesn't want to test for it. She recommended that I use biotene and lozenges for the mouth dryness and my opthalmologist gave me a prescription for restasis, for the dry eyes. I also have joint and muscle pain and fatigue, which are symptoms of sjogren's but also lupus. I know there is a lot of overlap in symptoms, but I am so frustrated with not knowing what is really going on with my body. I think it is great that I am offered ways to treat symptoms, but find it so disturbing not to have any true explanation. It seems like my rheumatologist is so accustomed to hearing about symptoms, that she lacks interest and barely even documents what I'm telling her about my symptoms. I have thought about trying to go to a different specialist, but I'm not sure what to do. I feel some sense of loyalty for my rheumatologist after all this time. Is there a specialist who evaluates and treats people with multiple autoimmune conditions? I have Alopecia, Type 1 Diabetes, and Lupus (with possible Secondary Sjogren's Syndrome and possible Secondary Raynauds Phenomenon). Not that I want to add another doc to my list, but I just can't accept that we have done all we can do in reference to my treatment. (Plaquenil helps, but it is a long way from being a miracle drug in my opinion.)
With an autoimmune disease you will have varying and multiple symptoms SLE specifically is an anything goes illness and can affect any body part or organ in your body There is NO cure and treatment is for symptom relief but symptom control is usually reserved for the more devastating as the drugs available to treat often have side effects worse than the illness.
I’ve had strong secondary symptoms indicating Sjogren’s but the tests turned out negative. I’m not sure how else to explain the constant dry eyes and dry mouth so I just attribute it to Lupus and maybe Sjogren’s and treat the symptoms.
I do wonder if the Lupus drugs can turn the Sjogren’s indicators negative like they can do with the Lupus indicators?
My rheumy also recommended xylitol for the dry mouth. I haven’t tried it yet because it’s hard to find and sort of expensive.
Thank you for replies. They are very helpful.
Hi JDT I can imagine it must be frustrating when I was diagnosed with SLE I was also Diagnosed with Sjögrens syndrome by my PCP and I had never heard of either I drink about 4-6 bottles of water a day to help with the dry mouth and was put on Restasis drops twice a day along with Refresh eye drops I can use every 4 hours on top of that to help with the dry eyes but don’t really find it necessary. Along side all my meds for my SLE so hopefully they will just get you tested for it to let you know already I don’t see why they haven’t. For now those are the two diagnosis I have am not looking forward to more but I know eventually they will come. Good luck God Bless
Hi. You should consider seeing an eye specialist. My mum has increased incidents of bleeding blood vessels behind her eyes due to untreated Sjogrens (secondary condition) and her Opthamologist is very jacked up in that regard. He checks her eyes every six months and shes been for laser treatment to counteract the bleeding of the vessels.
Best to find a doc who listens actively to your symptoms. There's no loyalty when it comes to your health. Besides as long as you pay for the check up he isn't doing you any favors. Trust your instinct and get someone who listens.
Wishing you strength always.
Mary said:
Hi JDT I can imagine it must be frustrating when I was diagnosed with SLE I was also Diagnosed with Sjögrens syndrome by my PCP and I had never heard of either I drink about 4-6 bottles of water a day to help with the dry mouth and was put on Restasis drops twice a day along with Refresh eye drops I can use every 4 hours on top of that to help with the dry eyes but don't really find it necessary. Along side all my meds for my SLE so hopefully they will just get you tested for it to let you know already I don't see why they haven't. For now those are the two diagnosis I have am not looking forward to more but I know eventually they will come. Good luck God BlessThank you Mary!
Thank you!
Bubbly said:
Hi. You should consider seeing an eye specialist. My mum has increased incidents of bleeding blood vessels behind her eyes due to untreated Sjogrens (secondary condition) and her Opthamologist is very jacked up in that regard. He checks her eyes every six months and shes been for laser treatment to counteract the bleeding of the vessels.
Best to find a doc who listens actively to your symptoms. There's no loyalty when it comes to your health. Besides as long as you pay for the check up he isn't doing you any favors. Trust your instinct and get someone who listens.
Wishing you strength always.
I have lupus and snogrens too. Restasis didn’t help my eyes, it just made them sting. I take evoxac for dry mouth, it really helps, and is now generic. The rheumy just knows the symptoms, and a lot of people have both.
I decided at some point to just call it all lupus and to not worry about what was what, it all adds up to being chronically ill. I recommend the sjogrens site run by the same people who run this one. When I was dignosed with sjogrens, they biopsied my inner bottom lip. Then I read that the test was only 50% accurate. I later had to have scar tissue removed. It’s not worth it. Some of you pain coul be fibromyalfia, too also a lot of lupies have it. That’s when I decided to call ig all lupus, rather than assign symptoms and finding it too frustrating to deal with (unless necessary.) it’s really a process we all go through. Ask you rheumy for evoxac, big help. Our medications can cause some of the thirsty/ dry eye thing to be even worse