I was diagnosed three years ago, dealing with Sjogrens for probably 8+ years and only started receiving treatment two months ago. I am having difficulty with knowing what is next and how to afford my treatment. I feel really alone. I don’t know anyone outside that has Sjogren’s. Do you need to know my symptoms? What are the right questions to ask?
Does anyone have any resources ? Are there any folks on from Chicago?
Hi mochacat! It can take some time to really wrap your head around things. You don’t have to share your symptoms right now, but if you have a specific question it might be helpful to give enough info so that people can give more specific ideas. In the meantime, the site is searchable, so if you are looking for anything specific, you can always search the site.
Hi! Thank you! I really don’t know what I am looking for. Someone that maybe can identify what I am going through in general.
I started back on Plaquinel at the beginning of March. These last two-three weeks have been difficult. Since it takes a long time for the meds to kick in, i don’t think they were to blame. (And the reason I stopped meds before was because my first rheumy I ever met, saw and diagnosed me had retired… only after the four visits. I then moved and changed insurance.)
Three weeks ago I was at work: confusion, brain fog settled in and lasted throughout the day. Really embarrassing. Two weeks ago began with severe dry nasal passages and throat.This week I had peaked a fever of 103.7 without any other symptoms besides fever aches and dryness. The temp lowered but remained between 100-101 for the next two days.
When my primary care doc tested me for Hpylori, it was negative. I have heard that Sjogren’s patients test positive normally for this. Also, everytime I was tested for all autoimmune antibodies Sjogren’s was off the charts. Everything else negative but my doc and old and new rheumy are thinking Lupus might creep in.
I have had brain fog, extreme fatigue and confusion on/off for years. This last time really frightened me. I was able to stick to work but I am scared how this will effect me longterm. My mom was adopted. I don’t know anyone in the family with Sjogrens or Lupus. I don’t even know what to look for.
The Sjogren syndrome foundation can be a good resource at https://www.sjogrens.org
One of the difficulties with diagnosing and treating is that everyone is different. Add to that that not everyone will have the positive blood work.
Plaquenil can be a good med. You need to make certain that you are getting your eyes checked with a visual field test. I was on it myself for 8 years and tolerated it fine.
It’s not unusual to have a low grade fever due to inflammation. But a fever over 101? That sounds like an infection. The dry nasal passages. . I have a hard time with that too. You can use a plain saline nasal spray. I also added in Evoxac to increase my saliva which also helped my nose and throat.
It’s tough, because we also don’t know how much worse it might get (or not). Treating the disease systemically and the symptoms can be a good approach.
Thanks again. Yes, I have been tested by 3 different rheumy’s and 1 physician. The test came back positive. Hpylori was something that I read is common in many diagnosed with SSprimary. Do you have to get tested for Lupus and Rheumatoid Arthritis every 6 months? My rheumatologist told me I need to because of SS primary usually has a side kick.
When you were diagnosed, did you feel they caught it as it began or years later?
I don’t know anything about an h pylori connection to Sjogrens. Sjogrens was diagnosed as my second autoimmune disease. I get all sorts of bloodwork done every three months because of the meds that I’m on. Plaquenil doesn’t typically need much blood monitoring but it certainly makes sense to keep track of your inflammatory markers.
It can be hard to distinguish sometimes the early times of an autoimmune disease. For some people it can take years and years to be diagnosed.
I use a Neil Med during the day if I need it, and Nozoil at night for nasal dryness
I’ve not heard of any link with H Pylori and Sjogrens Syndrome either- it’s a common infection to have. I did find this research piece, where they conclude:
‘H. pylori infection is very common and widespread. It has survived in its host (humans) for at least last 58 000 years. H. pylori have extensive interactions with immune system resulting in its downregulation. Its role as a causative agent of autoimmune diseases in genetically susceptible host has been extensively studied. Studies looking at the presence of H. pylori in various autoimmune diseases found mixed results with some even suggesting a protective role. However, mechanistic studies establishing causality are lacking. Further research looking at the possible role of H. pylori in autoimmune diseases is needed.’ (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3643302/ )
Thank you both for your responses. I am sorry it took so long to get back to you. I am sure my doc had a reason for thinking there was a correlation. I am going to say probably due to some stomach problems I had been having.