British SJS Assoc AGM

[Heather Bell]

Hi everyone

I wonder if any of the brits attended the British SJS annual general meeting.
They had a speaker who's subject was the increased risk of cardiovascular disease in SJS patients. I was aware that there is an increased risk with other autoimmune inflammatory diseases like Lupus but not aware of risk with primary SJS.
If anyone heard the talk I would be interested to hear their thoughts on it.
It seems like risk factors like the devils candy (steroids) have been blamed, but now it has been established that inflammation plays a direct role in the development of artherosclerotic change.
Speaking personally I have unexplained heart problems and have never taken steroids.

Heather

[Scottietottie]

Hi Heather 

No I wasn't there and no I didn't know that! It makes me wonder if one of my parents had SjS without ever being aware of it. My Dad had lots of aches and pains, stringy saliva (which we always put down to smoking) although I can't say his eyes ever looked dry. He died from something heart related.

Take care - Scottie 

[Katybarstool]

Hi Heather

I went to that meeting. The doctor was called Elizabeth Price. There is a summary of her lecture in the latest BSSA newsletter. She practices at the Great Weston in Swindon, Wiltshire and I'm sure she would send you a transcript of her lecture if you contact her. This is the summary, for anyone with an interest.

There is evidence that patients with certain autoimmune inflammatory diseases are at increased risk of developing cardiovascular disease (CVD) compared to unaffected individuals. Young women with systemic lupus erthematosus are50 times more likely to suffer a myocardial infarct than young women without disease. Patients with rheumatoid arthritis and anklyosing spondylitis also appear to be at increased risk of CVD. Possible reasons include the higher prevalence of traditional risk factors in these patient groups eg hypertension, diabetes melitus and smoking, together with the use of drugs such as steroids and non steroid anti-inflammatory drugs. Another important factor is the direct effect of inflammation on vascular endothelium since it is now established that inflammation plays an important role in the development of atherosclerotic change.

Relatively little is known, however, about cardiovascular risk in patients with primary Sjogren's Syndrome, with conflicting evidence from studies to date.   

[lynnmarie219]

Hmmmmm...this is interesting and something that I had not heard of before.

Thanks for bringing it up Heather and for giving us the information Katy!

[Heather Bell]

Hi

Yes it does make you think, Most people with other AI disease are aware of the heart risks (just don't try to get a cardiac doc to accept this!), but a risk from SJS alone is a new concept.

I will eventually get round to contacting the doc (thanks Scottietottie) but I am pretty rough at the moment (strangely it is the heart playing up) but if there is anyone out there who is more organised and technical than me it would be great if they could get the Dr Price to send an electronic version to post on this site, is there some way to keep it as a reference rather than have it disappear in a sea of posts? I did say I am not technical.

Hope you are all having a good day

Heather

[Epson]

Two doctors have explained to me that SS can affect any organ in the body, now that does not mean that it will, but it can. 

Frankly, there isn't a darn thing I can do about it except enjoy life as much as I can before the other shoe drops.  I have recently come to the conclusion that I can't afford to live as long as my parents did, nor do I want to spend part of my life in a nursing home.  After watching my mom suffer with here AI disorders, a full blown heart attach sounds good to me.

[SeaBreeze]

OK, this is too weird...

Some of you know I had a heart attack November 14, had angioplasty for 100% in circumflex artery and they saw other arteries of concern but not 'closed' enough to stent...  So that's a little background...

I have an appt with cardiologist on Monday, the PA called today and asked me to bring any office notes from the rheumy and any copies of blood work done outside of the hospital since the Spring ... She asked me to come in and pick up an order for bloodwork to have done today...  Docs thought it was weird that my cardiac enzymes were really too high for the amount of damage ... PA said they are very interested in my mixed connective tissue diagnosis and level of inflammation and its role in this coronary event and want cardiac inflammation studies run, (CRP, homocystine, sed rate, fibrinogen and BNP) BNP is some kind of protein... I know that mctd can affect any organ at any time  but I thought my heart was ok, given my normal echo in August !! that's a whole diff can of worms... So sorry for chatter, but this aspect of the AI's is really scary... Is anyone else falling into the 'cardiac' category ? I'm going to contact Dr. Price..

[SeaBreeze]

KATY... if you have a second would you please post some more info on that BSSA newsletter, I found the website and a general contact email addy, but would like to refer to a newsletter issue or date ... Thank you so much !!!!!!!!!

[Linda196]

 BNP or B-type natriuretic peptide  (aka GC-B), is a 32 amino acid polypeptide secreted by the ventricles of the heart in response to stretching of individual cells in the heart muscle. It's a way of diagnosing damage to the left ventricle of the heart, even in those people who don't have symptoms.

I've been followed closely for 30 years now, because my cardiologist has always been concerned about the possibility of my various autoimmune disorders having an effect on my heart (he must be ahead of his time). Although I've had temporary changes in heart rate, episodes of pericarditis, and have chronic irregular beats, I've had no  ischemic changes, or indications of heart attack.

[SeaBreeze]

thank you Linda...

[Katybarstool]

Hi SeaBreeze

Its BSSA Sjogren's Today, Winter 2008, Volume 23, Issue No. 4.

Kathyx