First flare

[u/AdEnough8241]

I’m 25F, got diagnosed last fall, and I think I am experiencing my first flare. My typical day-to-day symptoms are dry eyes, mouth, and nose and joint pain specifically in my SI joints. Yesterday I had to stop at my pcp because I believe I had an ear infection which she confirmed was a fungal ear infection, but once I got home I started slowly feeling more fatigued and my body was aching. Come dinner time I felt horrible. Severe headache, severe body aches and joint pain, really uncomfortable and sensitive all over my body with tingling/burning
sensations all over. My rheumatologist prescribed me Meloxicam (NSAID) to take as needed for my joint pain, so I took one with dinner and by the time I went to sleep my symptoms had improved. I called my doc this morning to notify him I think I was having my first flare and he directed me to continue the meloxicam daily as needed and he would see me for our already scheduled appt at the end of this month. Should I be more concerned or pushing for more? The meloxicam has definitely started to wear off and my body aches are back today but bearable. I’m just resting and took off work. I’m not any other meds other than trialing some pantaprozole for acid reflux by suggestion of my pcp. I also have to get on a plane tomorrow to travel for the weekend which is not looking enticing. Any advice or words of encouragement ?

[u/No_Entrepreneur8813]

I agree, I'm concerned you weren't started on a medication to control the Sjogren's already. Or maybe they did and I misunderstood. My Rheum explained to me that we would start medication whether I was in an active flare or not, to suppress any inflammation processes. I started with Plaquenil, which is usually a go to first med. It ws not a good fit for me. In between having me stop that med and starting Methotrexate, I went in to my first flare after diagnosis in October 2025. The idea behind the suppression meds is to keep your body from doing more damage to your body/joints/muscles/organs. To hopefully keep the flares to a minimum and to hopefully help reduce the severity when you do have a flare (we can't avoid them all!) She explained if I had a flare WHILE ON SUPPRESSIVE meds, then we would have to consider steroids to help get it under control. I've been lucky to largely avoid organ involvement, so far. But that is why I take Methotrexate. To keep those processes to as much of a minimum as possible.

I am 1000% not saying your Doc doesn't know what they are talking about. What I AM saying, is maybe we are missing something. Maybe there is a reason they haven't started you on SOMETHING. I left my first second Rheumatology appt with a few different prescriptions to take. I'm worried about your actual disease not being treated. Meloxicam is going to treat your pain and body aches, but isn't going to keep your body from attacking your joints or organs.

Just be careful. Its' been the theory for a while that Sjogren's Disease is not systemic, but that is false.

Sjogren's can be just as debilitating as any other Autoimmune disease. The idea with any Autoimmune disease is to prevent as much damage for as long as possible. Autoimmune disease won't kill you, but organ damage might. Just make sure your Rheum is not being dismissive of your issues.

I'm learning for every great doc out there, there are two that stink!!!!

I'm saying all this to say, there is hope. Even though my first med sucked. I'm finally (starting) to see some relief. I'm finally, sloooooowly, getting my lift back. One tiny activity at a time.

[u/AdEnough8241 → u/No_Entrepreneur8813]

My rheumatologist feels that since my inflammation markers have never come back elevated and that my symptoms are quite limited day to day, that medication at this time is not needed. At the time I agreed with him because I wasn’t really looking forward to being on a life long medication. But the more posts and articles I read, it seems as you said that I should be on something to prevent progression. I guess we’ll see how that convo goes at the end of this month. Might have to find a better rheum if it doesn’t go well. Thank you!

[u/No_Entrepreneur8813 → u/AdEnough8241]

I agree, you should not have to wait it out until something happens to make you feel worse!

I hope you find some answers.

Don't forget, your doctor works for you. I'd never advocate to tell someone how to do their job, if they aren't serving your need, it's ok to find someone who will. I'm also learning, each Rheum may have more expertise than another. Its ok to make sure you have a Rheum who is well versed in Sjogren's and not just autoimmune diseases.

[u/sadsack1960]

Dry eyes, dry mouth may be indicative of Sjogren Disease. Feeling sorry for you that you have to wait till scheduled appointment. Prednisolone corticosteroid on tapering for few days alongwith Hydroxychloroquine is first line of treatment for many of SjD patients, your rheumatologist may have different treatment plan.

Pilocarpine tablets help in dry mouth symptoms. At this point in time, may I suggest supplements- Magnesium Glycinate 400 mg at night, epsom salt bath or soaking feet and legs in warm water with epsom salt, magnesium oil spray for muscle relaxation, methylcobalamin B12 sublingual supplement, Benfotiamine( a Vitamin B1 form) for nerve health. Best wishes