New Clinical Treatment Standards for SjS

[SjoGirl]

This should be of great interest to all:

http://www.rheumatologynetwork.com/sjogrens-syndrome/new-sjogrens-guidelines-outline-19-treatment-recommendations?GUID=3FC909FC-3A2C-48D4-9622-0CA0C06483F5&rememberme=1&ts=21032017

[Nymph]

I guess that the main change here is the increased acceptance of rituximab?

Otherwise it sounds about the same. Maybe I'm missing something.

[irish]

They don't advocate jumping into treatment. Actually, the things they treat are things that are very bothersome to patients. However, there are a lot of other issues that they do not mention that people find improved with Methotrexate, cellcept, etc. The plaquenil continues to be the first drug of choice for the aches and pains and fatigue. A good anti-inflammatory.

The Rituximab is being used more in my state for treatment of Sjogrens and other autoimmune diseases.

Bottom line is that treatment is very optional and is often dictated by the experience of our doctors. Depends on our age, need to work, and many other things. Nothing is cut and dried so continues to be pretty much the same as before due to patient and doctors discretion.

Just my observations. Irish

[Jasper]

The treatment guidelines are extensively detailed in the new Clinical Practice Guidelines which can be found on the Sjogren's Foundation website.

http://www.sjogrens.org/

After you get to the website, then pick:   Provider/Researcher tab.

Then pick:  Clinical Practice Guidelines.

Then pick:  View the SSF's Rheumatology Clinical Practice Guidelines for Sjogren's


3/26 edit: I just looked at the practice guidelines again and they have changed them so that the detailed version is no longer on the website. This is very unfortunate.

[Nymph]

I am a little disappointed that guidelines are lacking for most neurological involvement.

[gurs]

I agree 100% Nympth!! I dont think our disease will ever get any type of treatment advances because they seem to think its just a dry eye-mouth syndrome. Needless to say, I have so many MS symptoms, and I know alot of us have neuro issues.

gursie

[Jasper]

I just looked at the Sjogren's Foundation  website and the clinical practice guidelines which are posted there.

They have altered the guidelines that used to be posted there. They now show only a very abbreviated version of the previously posted practice guidelines. I have no idea why they did this but the current version leaves out a ton of information that the old version included.

I find this very unfortunate.

The previous version made it very clear that biologics were a treatment option for systemic involvement, including peripheral neuropathy, This version does state the same thing but this version is so abbreviated that much is missed when reading it.

Bottom line though, biologics, such as Rituximab for peripheral neuropathy, are included as a treatment option. However, I think they should have gone into more detailed discussion of it (which they did do in the previous version).

The one recommendation that I do have a major problem with is their recommendation for fatigue. They recommend exercise for Sjogren's fatigue. To my knowledge there is only one study of 11 people who did exercise fora few weeks and felt there may be some improvement. A study involving 11 people means nothing and a study that lasts only a few short weeks means nothing. Plus, did these 11 people have severe Sjogren's fatigue. I have nothing against exercise. It is good for maintaining strength, flexibility, heart health, general body health, etc. But, in my opinion, it does absolutely nothing for Sjogren's fatigue. Most of us did not start out being couch potatos or vegetating. Most of us were very active people, working, hiking, running, doing sports, etc. We were forced to slow down due to fatigue, we were not slowed down to begin with. So, recommending something we always did and had to give up or reduce due to fatigue, makes no sense. If we could do more we would be doing more. In additon, in several studies Rituximab has shown excellent results in reducing Sjogren's fatigue, so why is Rituximab not being recommended for Sjogren's fatigue. To me, their recommendation of exercise for fatigue shows a complete lack of understanding of Sjogren's fatigue. It is like they are clueless.

PS: I agree that there is a real disconnect between how Sjogren' Disease actually affects us and how the doctors seem to perceive how Sjogren's affects us. They don't seem to get how disabling and debilitation this disease is. They are focused on dry eyes and mouth, which they consider annoyances, and minimize the other symptoms.  They are now treating Autoimmune Alopecia with heavy duty drugs. No one is disabled by Alopecia. If Alopecia is important enough to treat, why are we not important enough to treat with drugs that actually work. (Maybe because they can SEE Alopecia and they cannot SEE our suffering.) I am fortunate to have a Rheumatologist who does treat me with Rituximab but most people with Sjogren's are not as fortunate as I am.

[wendyoh]

that is interesting that it has been modified to be less informative to assist SJS. Does anyone have any idea why? I was just becoming hopeful that things were getting better perhaps in medicine for SJS folks because I learned that our Midwest moderate sized city is opening a Sjogrens specific clinic where the rheumatologist has stated that brain fog and neuro issues etc are all connected to it.....seemed so progressive and validating.....that somewhere besides major medical center word is getting out.

[Nymph]

Do they need to SEE my new incontinence issues to do something about it? 

[Jasper]

Wendyoh .....

My guess is that they abbreviated it because they thought it would be simpler to read.

In my opinion, abbreviating it so it is simpler to read is of no benefit to anyone. The abbreviated version omits a large amount of important information.

Nymph .....

I empathize with you.

[SjoGirl]

FYI folks I'm not defending or supporting the guidelines simply noting that they were issued.

I concur that with having hoped for more. I can say with regard to my recent screening for a clinical trial (for which I didn't qualify), I learned that there are quite a number of drugs in trial for SJS. If nothing else, maybe that can give all of us some hope.

[quietdynamics]

I found this version of the guideline to be more informative.
New Treatment Guidelines for Sjogren's Disease   https://www.sjogrens.org/files/research/RheumatologyCPG.pdf

[Jasper]

Thank you quietdynamics for that link to that version of the new treatment guidelines.

That version of the new treatment guidelines is the version that used to be on the Sjogren's Foundation website.

It is definitely a much better version than the one currently posted on the website.  I wish they had not replaced it with the current useless version.

[Nymph]

Yay! Thank you!