Help with Feeling Terrible

Hi I joined a while ago and didn’t really have any questions, I seem to be getting worse now. When I was first diagnosed with sjogren’s syndrome a few years ago and it was very down played by my physicians and I didn’t have many issues with it. I have now transferred to new physicians (at Mayo Clinic in Arizona). I am wondering what you can suggest to help me. I have days where I feel just horrible, sometimes I feel like I am coming down with a bad cold or flu and within a few hours am fine. Other days I feel like I’m dying and can barely move for a good 24 hours. I tried taking hydroxychloroquine at a low dose and my body rejected it. Thank you for your help, I feel very lost right now.

Hi Jennie! I’m so sorry that you’re having such an awful time. You’ve tried plaquenil, which is often the first medication that people will try out for Sjogren’s. There are definitely other meds that could be tried. Clearly with this condition there’s two different parts of it - the symptoms, and the systemic issues, which include fatigue. It sounds like you may need to speak with your doctor about a different disease modifying med. In the meantime, I would encourage you to listen to your body in terms of what it needs.

Hi JeannieB. I have so been there. You do learn to gauge a bit how your energy is doing and what your triggers are.
Lots and lots of self care…and don’t feel bad for taking time.
I know its an adjustment that may seem a little scary. Know that there are people here who totally get it.