Will immunosuppressant stop or slow sjogren disease?

[quietdynamics]

Treatment Guidelines for Rheumatologic Manifestations of Sjögren's Syndrome: Use of Biologic Agents, Management of Fatigue, and Inflammatory Musculoskeletal Pain  https://onlinelibrary.wiley.com/doi/abs/10.1002/acr.22968

[SjoGirl]

I am told that Imuran is supposed to help slow progression. Some of the books about SjS and some docs, along with the SjS Foundation, say that progression is typically (not always of course) slow and that people with SjS will often die of other diseases or old age v. from SjS.

[Sharon]

markt- It's good to hear how Rituximab affects someone with Seronegative SS as all the research has been done on only Seropositive SS. Amazing it's helped you so much in such short a time. Probably because you began shortly after you noticed symptoms.
I am still wondering if I would be better off on Rituximab rather than on the Orencia I'm taking.
Orencia has helped much with the wretched pain I was experiencing but my sicca symptoms have continued to progress.

[markt]

markt- It's good to hear how Rituximab affects someone with Seronegative SS as all the research has been done on only Seropositive SS. Amazing it's helped you so much in such short a time. Probably because you began shortly after you noticed symptoms.
I am still wondering if I would be better off on Rituximab rather than on the Orencia I'm taking.
Orencia has helped much with the wretched pain I was experiencing but my sicca symptoms have continued to progress.

Hi Sharon,

I elected to try it because of articles such as that... and because of the anecdotal experiences of others that I have come across (advice from actual patients who actually have this disease is gold) and secondly because I really respected my Rheumatologist/Neurologist; I felt a sense of trust with him and that he was really leaving nothing on the table in an effort to get me well and able to raise my kids.   

I am just trying to leave some good info on here for folks to fall back on and consider.  I had a hard time finding good information from patients (with regards to RTX application in Sjogrens).  The stuff some people wrote demonstrated poor grammar, lack of knowledge, technical content, etc. and just did not instill a lot of faith in someone like me.  So hopefully, what I share serves others well.

Likewise, I wonder if Orencia could possibly help me in different ways due to it's different mechanism of action.  Or even Tocilizumab (another commercially licensed and available RA biologic that has demonstrated efficacy in Sjogrens, which is currently progressing through trials for Sjogrens). 

Who benefits from what drug is still coming to light, as novel biomarkers are being established and translated into actionable care plans for different Sjogrens patient sub-sets.  (A focus for this decade of Rheumatologists treating Sjogrens).

[Sharon]

Hi markt, I definitely believe in the importance of sharing your experience and any information you have on forums like this one. It truly is invaluable.
I too have been following the latest study on Tocilizumab. I contacted the head researcher last year and was told results should become available in the year 2019. Our best bet for now is to try to find relief with pre-existing medications that have shown promise in SS patients which are the 3 we have mentioned.
As far as testing for sub-sets goes, have you ever been tested for the APCA autoantibody?

[markt]

Hi markt, I definitely believe in the importance of sharing your experience and any information you have on forums like this one. It truly is invaluable.
I too have been following the latest study on Tocilizumab. I contacted the head researcher last year and was told results should become available in the year 2019. Our best bet for now is to try to find relief with pre-existing medications that have shown promise in SS patients which are the 3 we have mentioned.
As far as testing for sub-sets goes, have you ever been tested for the APCA autoantibody?

Hi Sharon, Tocilizumab is available at present for RA.  Some folks here may be able to try it off label, or Orencia for that matter, if their Rheum is on board. 

I wonder if your Rheum would entertain trying Tocilizumab instead of Orencia to see if it better helps you to manage your RA and Sjogrens? 

Beyond FDA Expanded Access stuff making peoples heads explode, this is a discussion item I have for my next few appointments.

[Sharon]

Exactly, the 3 biological meds currently available which have been or are being researched (to my knowledge) are: Rituximab, Abatacept (Orencia) and Tocilizumab.
I believe I would be able to convince my rheumy to let me give another biological a try,
however it would be quite a risk for me to make the switch. The Orencia saved my joints and I may not respond as well to another biological. It also took me many months of serious side effects to finally adapt to the Orencia, so going through that again with another med that may not even work as well (or at all) causes me much pause. I also find that the longer I'm on the Orencia the better my joints and digestive issues get.
I would be interested in hearing your rheumy's take on this issue of drug choice.