# Sjogrens syndrome anyone?



## Dave7 (11 Jun 2020)

Not me. My SiL has just been diagnosed with it. Daughter and he have checked and double checked all the the symptoms and it is definite.
Doctor has prescribed an 8 week course of anti biotics.The NHS website also says antibiotics.
My worry is that Sjogrens attacks the immune system.......but antibiotics also affects the immune system.
Just wondering if any CCrs have faced this and how you have fought it.


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## vickster (11 Jun 2020)

I think @PK99 has mentioned having a diagnosis

has your SiL seen a rheumatologist specialising in the condition?

I have an ex colleague with it and she has been rendered very unwell, As it has badly affected her heart


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## Dave7 (11 Jun 2020)

vickster said:


> I think @PK99 has mentioned having a diagnosis
> 
> has your SiL seen a rheumatologist specialising in the condition?
> 
> I have an ex colleague with it and she has been rendered very unwell, As it has badly affected her heart


No as re' rheumatologist but it is setting in. Shame** as he has been such a fit guy (and a good SiL).
Apparently it can affect all your main organs. So far its mainly his eyes, bladder and joints.
**shame for anyone who is ill of course.


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## Electric_Andy (11 Jun 2020)

I don't know anyone with it, but there has been a few clinical trials come my way over the years. Might be worth asking if any are open at the nearest hospital?


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## vickster (11 Jun 2020)

Patient groups are always great sources of info and support. As well as for names of specialists , new developments etc
https://www.bssa.uk.net/


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## PK99 (11 Jun 2020)

Dave7 said:


> Not me. My SiL has just been diagnosed with it. Daughter and he have checked and double checked all the the symptoms and it is definite.
> Doctor has prescribed an 8 week course of anti biotics.The NHS website also says antibiotics.
> My worry is that Sjogrens attacks the immune system.......but antibiotics also affects the immune system.
> Just wondering if any CCrs have faced this and how you have fought it.



As @vickster says, I have been diagnosed with Sjogren's syndrome - or more accurately, I have serology consistent with Sjogren's as there is no specific test.

Now,* I AM NOT A DOCTOR BUT*, as a well informed person with the the condition, I am puzzled by the prescription antibiotics. Sjogren's is not a bacterial infection and is not amenable to treatment by antibiotics. Sjogren's is a lifelong autoimmune disorder in the same family as rheumatoid arthritis and Lupus. It is not the case that Sjogren's attacks the immune system. It is the immune system itself potentially attacking bits of the body. Maybe there is some associated infection that is being treated by the antibiotic?

At my last Rheumatology clinic I saw a young enthusiastic lady Registrar instead of my normal taciturn and somewhat grumpy consultant. She took the time to explain the nature and origin of the condition, and happened to make the point that, for Rheumatologists, Sjogren's is an every day condition, but for GP's it is an unknown black box - I could not follow from your posts if the doctor is GP or Rheumatologist. If it is GP, seek a referral to a Rheumatologist.

I have had serious issues over the past 3 years - now apparently fully resolved. Repeated chest infections, appeared to trigger Sjogren's induced pleural inflammation. One time around the right lung, then the next winter around the left lung, which mean that my heart was beating against a hydrostatic pressure. I had 750ml of fluid drained from the lung cavity which instantly resolved the condition - much to my relief and the various cardiologists to whom I ha been urgently referred after showing symptoms of acute heart failure. 

I am now on lifetime twice daily Hydroxychloroquine - which acts not as treatment of the condition but acts as a disease modifier - a damper on the inflammatory response without compromising the immune system as steroids would. (Which, btw is how it is thought to assist with Covid-19). I am also on lifetime prophylactic Azithromycin to minimize the risk of chest infections triggering the Sjogren's induced pleural inflammation.

I'm now back on the bike and starting to cycle regularly again - I did a 50 miler last week before the crappy weather kicked in.


I hope that helps!

These are excellent resources:

https://www.mayoclinic.org/diseases...xt=Overview,as rheumatoid arthritis and lupus.

https://www.nhs.uk/conditions/sjogrens-syndrome/

https://www.bssa.uk.net/ [UK sjogren's support group)

https://www.rheumatology.org/I-Am-A/Patient-Caregiver/Diseases-Conditions/Sjogrens-Syndrome


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## midlife (11 Jun 2020)

I see shedloads of patients with Sjogrens Syndrome as it gives a dry mouth. Usually there is a hospital referral to someone who deals with autoimmune disorders, normally a rheumatologist.


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