Frustrating Doctors

[ghostkiwi]

It's been awhile since I've been on here as my sjogrens has been mostly under control for the last few years but it's been getting significantly worse since January to the point I'm very concerned and I need to vent to people that can understand.

I've had a lot going on that's made it hard to keep my stress levels where I'd like them and as a result I've been having more flares. When I try to take a couple days from school to calm the flares my school gets angry at me for actually using my accommodations so I push myself into even more flares. My sed rate has steadily been rising and in the last month my sed rate got so high it's no longer in the chartable range which is pretty concerning. I'm so exhausted all the time and I just feel unwell. I've been worried about a second autoimmune disease or possibly cancer as this feels different than my normal flares.

New rheumy ran my autoimmune markers again to see if I had a second autoimmune disease brewing and my anti-tpo and anti-dsDNA both came back positive and high for the first time ever(in over a decade of testing). Which to me seems like a key indicator that a second autoimmune disease is brewing. But instead of doing more testing to try and confirm anything I was told I don't have an infection or butterfly rash so there's nothing they can do but give me an antidepressant to try and help me "sleep better so my immune system functions better". I got so frustrated after hearing that because it felt so dismissive and like I was being gaslit. My problem isn't lack of sleep it's that I'm tired because my immune system is clearly actively attacking myself. But they said and I quote "there's no treatment for Sjögren's", claiming they can only treat certain symptoms but if I get a butterfly rash then they can do more so they will check back in 3 months to do testing again. And I just don't understand what I need to have wrong before my doctor takes this seriously. Like how does the butterfly rash change the underlying problem/testing/treatment options?

Nothing has been ruled out aside from infection and all they want to do is give me an antidepressant which won't do anything as I'm not depressed and won't fix my immune system malfunction. I understand plaquenil makes me sick so I can't take it and methotrexate didn't help my symptoms at all either but is there no other option for treatment?? Isn't basic standard of care further testing to rule things out and be proactive instead of waiting for organ damage? I'm feeling so frustrated with all of this and I don't know what to do when the people that are meant to help me won't help me.

[Linda196]

Have you ever had a trial of Prednisone? That is falling out of favour as first line treatment, and I'm living the example of why, because after more than 20 years of almost conitinuous streoid therapy, I have now developed Cushings Syndrome and have to reduce my Prednisone to as low a dose as possible (I will never be able to stop completely because the continuous use had depressed my adrenal function too much).

For the first several years, I was able to take a steroid break, to protect the adrenal function , but that became impossible as more damage was done. Knowing what I know now, I would have gladly taken 1-3 months steroid therapy for severe flares and treated symptomatically for the rest of the time.

There are other drugs classed as DMARDS, like nipocalimab, Imuran, or Cytoxan, which can be alternatives to Plaquenil, and if your doctors were willing to try the Plaq, they may consider those, but their reluctance to try something else without specific symptoms is concerning.

I don't understand how antidepressants helping you sleep better would help, but they may actually help with pain. Symptoms aside, the increasing sed rate and appearance of new markers should be reasons for further testing. You say, correctly, that antidepressants won't fix your immune system malfunction, but infortunately nothing else will either, but effective treatment can control your symptoms and slow progression.

[ghostkiwi]

Thank you Linda, I'm glad my concern is valid and I'm not just overthinking this.

My first couple of rheumatologists stressed being on a medication. The next couple of rheumatologists said I was "stable" so I didn't need medication unless labs/symptoms got worse. Now my labs and symptoms have gotten worse but my new rheumatologist isn't willing to do much of anything so I really don't understand the criteria for all of this.
I have taken prednisone maybe three or four times in the past(it makes me either emotional or apathetic so I only take it when symptoms get really bad). I was given a two week taper of prednisone in January because I was having a bad flare and I couldn't move my right wrist at all and it was clearly swollen and painful. It worked well for my wrist. Steroids were brought up on my last phone call but my doctor essentially said we shouldn't use the steroids too often because it can cause osteoporosis. But I'm also 30, have great bones, get plenty of calcium, and aren't looking for a high dose or long term use so I don't really understand the hesitation.