New Study you may have received a brochure from the SSF

[SjoDry]

Hi Sjoggie-Mates.

For those of you who are members of the SSF, you may have received a letter/brochure with info about a doctor who is doing a Sjogren's clinical research study last week. The doctor, is my Rheumatologist (who trained under Vivino).

Of course I immediately emailed him to ask questions about the study. People who qualify for this study will have bloodwork that supports their SS diagnosis.
The drug is an immunosuppressive therapy that targets T cells given as an injection under the skin.

I do not know any other qualifying criteria for the study.

I was actually trying to plant a seed with my doc by asking him a thoughtfully worded question & was surprised by his answer. My question was that I had noticed a number of folks on the Sjogren's World Forum who have CVID and SS/other co-morbid illnesses. When he has a patient who cannot create the SS antibodies (such as a CVID patient) to test positive for SS...does he do automatically do further testing for immune deficiencies, or does he refer to an Immunologist. My concern is that many patients can fall through the cracks like I did for several years.

I was pleasantly surprised when he wrote back..."This is a  FANTASTIC question, how about if I told you we were literally discussing this topic this morning (rheumatology grand round) i.e the interaction between CVID and Sjogren's !? you are correct there are many patients with CVID who have symptoms that exactly resembles Sjogren's and the question is, what do you call them, Sjogren's and CVID happening separately or that CVID has led to Sjogren's or even vice versa, the answer is , no one knows yet !"

I do test many of the patients who look like Sjogren's and do not have the classic blood work for immune deficiency for this exact reason.

I think that his response is encouraging. Finally, the medical community/med schools are getting bonafide diagnostic criteria and new docs will learn the reality of SS, but also they are making other connections between the immune system and SS. Of course they are still baby steps at this point..but maybe the next generation of SS patients will not have to wait years for a diagnosis or be dismissed as a hypochondriac.

Have a great day!
SjoDry

[LilliaT]

This is fascinating, and it's great that doctors like yours are actively thinking about issues like this. 

I know very little about CVID, although I did a little reading on it once after reading another post mentioning it here.  This may be a stupid question, but if CVID could stop someone from being able to create the SS antibodies, does it also mean that he or she likely wouldn't have a positive ANA result? 

[SjoDry]

Lillia,

I really don't know..that is a good question. I will have to try to research it. Perhaps some of our Sjoggie-Mate nurses on the forum here..know.
I will poke around & see if I can find anything about it.

Take care.
SjoDry

[SjoDry]

Lillia,

Here is your answer: I found this in a study.

Joint manifestations resembling rheumatoid arthritis or juvenile rheumatoid arthritis occur in 1% to 10% of patients with CVID [5,8,9]. These generally include symmetric involvement of few or many joints—commonly the knees, ankles, and hands—and may result in joint destruction. Antinuclear antibodies or a rheumatoid factor are typically absent due to lack of antibody production in CVID.

The study is: AutoImmunity in Common Variable Immune Deficiency: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2919211/

SjoDry

[LilliaT]

Wow, thank you so much.  It was really nice of you to take the time to research this. 

[Jasper]

It is great to know that another study on drugs/treatment for Sjogren's Disease is being conducted. I hope the results are positive and the treatment works. If I was not already on Rituximab infusions, I would volunteer.

Also, great to hear his response to your question.

I saw my Rheumatologist a week and a half ago and she told me she is using Rituximab infusions in more and more of her Sjogren's patients and she is seeing very positive results, just like I had. Rituximab has been a miracle drug for me and I wish more people had doctors who were willing to treat them with Rituximab infusions. 

[A Mom on Spin]

Hi SjoDry,

I am a member of the SSF and may have thrown the brochure away but would definitely be interested.  Where is the study being done?

[SjoDry]

Hi Mom no Spin.

I know the study base is here in Pittsburgh. But I don't know if he is working with other medical centers in different cities. It does say , compensation for travel may be provided. Why don't you contact
the SSF & have them send you the letter that came with the brochure.


SjoDry

[Judie P]

I got a letter last week and have been meaning to call.  Unfortunately, we had to put our 19 year old cat to sleep yesterday and did not have a chance, nor care to, call.  Mine is in UCSF (University of California San Francisco) which has a large Sjogren's clinic of its own.