Sjogrens World Forums

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.

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.

Tuesday was my first visit with my new rheumatologist.  Bottom line, he does not think I need re-testing.  He doesn't see Lupus or RA and only some Sjogrens with me.  He did order some labs (seems like for general health) and they did a bone scan.  He doesn't like the idea of me taking 10mg prednisone daily so I'll try something that I will give myself with an injection.  Will also begin shots for my bones. 

I'm confused right now but hoping it will all make sense eventually. 

Thank you for your time and information. 

Best, Marie

Thank you so much.  I think I'll ask for tests if my new rheumatologist doesn't mention it.  I'll see him on Tuesday.  (My first one retired.)   I am seeing the butterfly rash on my cheeks almost daily now if I go outside.  It' not too bad but I see it and would like to know. I'll post up after my visit. 

Thank you again.  Take care.
Marie 

Thank you for including your labs, it helps to know that has already been tested. You did mention that you've been positive for RA for decades. What was that based on, RF or anti-CCP? the RF is a bit more general than Anti-CCP, and if the second was a positive, it would probably make the difference between Primary or Secondary Sjogren's. Primary just means the Sjogren's is the only diagnosed autoimmune disease.

The Antichromatin Antibodies and Anti-DNA(SS)IgG are both markers for Lupus, but also Sjogren's and a few other things, Anti-DNA(DS)IgG (double strand) would be more specific for Lupus

Since I also have markers for several conditions that I haven't been diagnosed for, because so many of the antibodies are common at varying levels to several conditions, I'm routinely tested once a year, but whenever I've developed new or worsening symptoms, especially some that lean more toward an undiagnosed condition, they are repeated.

Hello, I have been wondering for some time if I have Lupus.  I'm grateful for the information I read in the previous member's post. 
But my question is 'how often should I get tested'.  I've only had the original test where I showed positive for Sjogrens.  I also had some markers for Lupus.  And I've tested positive for RA for decades. 
But when I ended up at the rheumatologist, he said it was mainly Sjogrens or primary Sjogrens (I think that's the phrase). 
Any feedback appreciated. 
Best wishes to everyone even though I know it's difficult. 
Marie

Thank you

Good approach, it's been my experience with my GP that any change in immunological values calls for a Rheumy visit, but since I see the rheumy once a year anyway, I haven't had any extra referrals.

My Dr left me this message:

Your ANA is positive, which is a nonspecific marker for autoimmune conditions, and could be due to your Sjogrens, but since it is higher than previous, I think you should see a rheumatologist to be further evaluated for possible lupus. I will make a referral.

I already know I have sjogren's I have been dealing with it for quite a few years now.

About the red spots They look like someone took a needle and stuck me all over my legs and there's red spots like that. If I could send you an image in your email I will. Thanks for the response


sjogren antibody panel (ssa, ssb, ro, la), serum
 3/18/2025

Result detail 1. sjogren's anti-ss-A. Above High Normal. >8.0. Normal reference: 0.0-0.9
sjogren's anti-ss-A

Above High Normal
>8.0
Normal reference: 0.0-0.9
Result detail 2. sjogren's anti-ss-B. . <0.2. Normal reference: 0.0-0.9
sjogren's anti-ss-B

<0.2
Normal reference: 0.0-0.9