Heart problems

[inga]

I am with Anita, on APS.  Half the cases do not have +titers.  Molecular mimicry is a possibility as well...it may be the case for all AI disease.

I would say the APS is more like the reason for those issues.  To blame Sjogren's for the aggressive athersclerosis, would not benefit you, it would be too easy, and totally not therapeutic for you.  Your situation is far more complex....think molecular.

There is little definition of the SSA and SSB in terms of what it does or what it is associated with. 

Given you are male, the preponderance of research on Lupus and AI issues is on females.  Females and males have vastly different immune systems or females would never carry a pregnancy to term.  Females must tolerate foreign DNA to a great degree to carry a fetus.

Something is damaging your endothelial cells.

To say that they have not identified all the autoantibodies that cause disease would be an understatement.  You happen to have some antibodies that in the last century, were identified in some of the people who had Sicca....as well as some that don't, as well as in some with Lupus or Sclero, as well as in those that don't.  Now that they found these antibodies, they don't know what to think of them....and thus far, research has been inconclusive.

This may be a long shot, but since you have such a +ANA, have they tried IVIG?

[cremer]

Hello Inga

Out of the four immunoglobulin subtypes I was only ever slightly defficient in IgM, the other three IgA, IgG and IgE have always been good. My Rheumy has never even hinted at IVIG, maybe because it's a last resort due to the costs involved.

I'll go and research endothelial cells now, can't you see I have to much time on my hands 

[sage]

Putting time to good use by researching eh Mick - all the best on that.    Used to be when we didn't have enough to do we had to polish the silver but that was never much of a chore in our house - just something to keep us out of trouble - laugh!

I guess if we all did the things that some of us are taught to do after having heart surgery, we would all be very healthy.  I do think there must be more than one main reason for atherosclerosis.  In particular, I think infections and serious viruses in the past could have kicked off the sjogren's and heart problems for me but there must be other reasons.

Keep us informed if anything comes up on the endothelial front - I see you can buy a book on the subject from Amazon - just $250! 

[anita]

Cremer,

IVIG is not just for immune deficiencies.   It is now used for some autoimmune processes to modify immune function.  It is fairy common with neuro manifestations of SjS now.

Sage:  There are MANY reasons for atherosclerosis...family history is a big one, then high cholesterol.  Some of the AI diseases 'accelerate' the process that has already begun...sometimes significantly.  However, whether SjS is one of those is still up in the air.  I think all AI disease contribute to changing many aspects of our health...including cardiac.  It is just unknown HOW MUCH of a change and who and what is likely to be affected most.   We are all different and some of us won't have cardiac problems, others will.

[sage]

Thanks for your response Anita - I am sure you are right in your explanation.  Of course, if we knew what sjogren's syndrome actually is, it might be a lot easier to identify what is going on.  Sometimes it occurs to me that sjogren's syndrome might be a type of rejection/healing process taking place - I know that may sound an unusual interpretation.  However, I have seen some literature where sjogren's is associated with other connective tissue disorders - lupus etc - that the course of those disorders can often be less severe when sjogren's is involved - just a thought!

[anita]

Sage, your thoughts are interesting.  I wouldn't normally think that "adding" another disease component would decrease the overall suffering and/or defined disease process, but logically your idea has merit to some degree.  If a patient with RA has painful swollen joint and then adds Sjogren's to the process, I could see where the damage to the exocrine system might cause LESS fluid to be produced and thus less swelling. 

However, the simple fact of adding any 'abnormal' disease process cannot be good.  The example (and maybe what you were referring to as possible healing) would be more like side-effects of one disease helping the side-effects of another.  Both diseases are still present, but opposite side-effects might "counter" each other  and thus look like they are helping.  Is this kinda what you where thinking/saying?

The heart is a very complicated organ, just as many of these AI diseases. 

I reiterate from my earlier post:  If one has heart problems (regardless of what is causing them), proper diagnosis and treatment is a must. 

[sage]

Anita: Thanks for your generous response.  I have to take this slowly when thinking it through (and still need my morning cuppa)   Sjogren's as a rejection/healing process? - I have to back this up with careful posts.
First off, I know I have heart problems fur sure!  I found that out the dramatic way of having a serious heart attack 18 months ago and to summarize - a six way bipass open heart surgery because of such major blockages.  Learning to live the good life in spite of all that.  :   They did think I must have had those blockages for a long time and in particular because I had developed "good collateral" vessels - interesting huh!
And before that?  20 years ago when having very serious symptoms, I was eventually given a diagnosis of sjogren's - ANA was off the charts, sjogren's auto antibodies, high RF, high SED.  Eventually found a good rheumatologist in Sacramento who thought at one point I might have "more than one thing" - hmmmm.  Said if I went to a lyme specialist they would probably give me a lyme or late lyme diagnosis.  But there was apparently never any indication of heart problems but who knows!  When I was in my thirties I had bad pains in my neck and jaw - TMJ? Trigeminal neuralgia? - looked too well to be taken seriously.  The only thing they ever came back with on tests at that time was a high rheumatoid factor and the doctor dismissed it as my not having any signs of osteoarthritis or "arthropathy" but to keep the test result in mind for the future.  The one thing I think I might have had was autoimmune thyroid - never had thyroid tests in those days - guess I was too healthy looking and just couldn't be taken seriously.  There is also a strong connection with thyroid abnormalities and heart - whether hypo or hyper and who knows - a high RF could also connect.  But I do have thyroid under control now -more soon

[sage]

Kamie: you are having such a very difficult time but do seem to have good doctors who are listening.  Thanks for your encouraging words on addressing specific problems - heart, eyes, teeth and so on - finding good medical professionals is key sometimes.  I wish you well on feeling better and having good care. 

[anita]

Sage you have me curious now.  Are there other risk factors for you, like family history, smoking, high cholesterol, etc?  I'm also curious how old you were when the heart attacks occurred, vs when you were diagnosed?  Anyway, it sound like Sjogren's is your main diagnosis, yet your don't feel that it had a role in accelerating your atherosclerosis...right?  Sounds like something sure did.  And I see where you might think Sjogren's may have blessed you  with the good collateral vessels...what/which exactly are good collateral vessels?

I too think that infections/viruses play a HUGE role in the entire process...especially kicking things into action.  I had mild symptoms of Sjogren's for years...and a few neuro and heart findings, but I did fine until an upper respiratory infection set the wheels in motion back in 1996.  Within a week, my autonomic functions crashed and I was in the hospital with crazy heart rates all over the place, BP dropping, and polyneuropathy.  Literally off road biking one week and completely disabled the next.  The dry was more intermittent with eyes being worse...although my lip biopsy shows complete destruction of the gland's acinar cell structure.

Trust me, we are just on the tip of the iceberg with what Sjogren's really is and what it can do...and it may be part of another process (I think).

[sage]

Anita: Am going to spend some time over the weekend to provide medical references re "sjogrens and more benign course of other connective tissue disorders when sj present" - will try to post the very most legitimate and up to date reports and not post anything that I personally cannot understand - in other words I am not getting down to the molecular level 

Please please realize I have no medical background and anything I may say personally is based on my own experiences and may not have any legitimate relationship to real answers. The role sjogren's played in all this is as yet too mysterious.

To answer your questions I do not have any of the traditional risk factors.  I was 72 yrs old when I had the death defying heart attack.  Believe me, the cardiologists and heart surgeon and nurses have had many many questions.  In general they don't seem to hold much connection between sj and heart.  I had a provisional diagnosis of sj about 16 yrs ago.

Meantime you might see if you think there is any connection with sjogren's re building collateral vessels in the heart:
AMERICAN HEART ASSOCIATION Carole Bullock - caroleb@heart.org

GROWTH FACTOR MAY DETERMINE WHO GROWS NEW BLOOD VESSELS THAT PROTECT AGAINST HEART ATTACKS
http://www.eurekalert.org/pub_releases/1999-08/AHA-Gfmd-020899.php

"DALLAS, August 3 -- The ability of some individuals to develop new coronary arteries that help to re-route blood flow around artery blockages might be the result of their ability to produce a growth factor, a protein that helps to generate new blood vessels, according to a paper in Circulation: Journal of the American Heart Association......"

[anita]

Very, Very interesting Sage.

I will be watching for your posts after the weekend.  This one article opens the door for new thought.  I must say I have never heard of this before, and I'm SURE those cardios and surgeons were indeed looking for answers.  I wonder though why your new collection of collateral vessels did NOT protect you from the heart attack?   I'm guess it's because you had so many (6) areas blocked...just too much for the new collection to handle.

I don't know how Sjogren's would help create this new network of vessels, but something does.  I guess they could monitor this vascular endothelium growth factor (VEGF) in sjogren's patients (or with other AI diseases) to see if sero-positive SjS patients have a higher factor.  I wonder what other groups of patients have this VEGF and collateral vessels.

You are sero-positive aren't you?  Is your ANA positive also? 

If the Sjs might have been responsible for the new network of vessels, what (in your opinion) caused the accelerated atherosclerosis?  Did your doctors comment on either the cause of the collateral vessels or the extensive CAD?

You truly have a unique case.

[Navigator]

We all have a syndrome(s) that are causing inflamation. Chronic inflamation increases the likelihood of heart issues....remember all the talk about periodontal disease (gum disease) and its impact on the heart?  Same idea with us all.  We need to try to get the inflamation under control, get our cholesterol under control (and hypothyroidism has as a common side effect..high cholesterol) and just generally take good care of ourselves. 

I just try every day to take the best care I can of myself.... I am even giving the old gym a new shot ...I used to come down with migraines every single time after a "workout"....I am tip toeing back in and just doing what I can. 

I hope you can be positive and not be sad. My dad had a first heartattack about the same age as you did and he lived to 82. ..so go figure.   I wish you the best.

[sage]

Navigator: You are very kind.  I am not sad at all.  But just a little apprehensive because of the serious dehydration I had.  I did come off all diuretics (had a major rash with those) and there was concern about congestive heart failure without the diuretic effect.  So far no problem. Thanks for the good words about your Father and I do hope each day you feel better and can enjoy getting back into the gymn.  I enjoy walking.

Anita: yes, I had SS-A SS-B and ANA in such a high titre, it really got their attention 15 yrs ago.  Re the sjogrens, I did ask the heart surgeon if he could at least check my SED rate and it was not high before the surgery.  I will have to send you an email re your other questions as it gets quite complicated.  I do think untreated low thyroid had a bit to do with the heart and I do think thyroid - in particular autoimmune thyroiditis plays a strong role in both sj and heart.

Running out of space - references as promised on next post.  Cheers
Edith

[sage]

http://www.jrheum.org/content/37/6/1143.abstract
Secondary Sj?gren?s Syndrome in Systemic Lupus Erythematosus Defines a Distinct Disease Subset
ALAN N. BAER, JANET W. MAYNARD, FASIL SHAIKH, LAURENCE S. MAGDER and MICHELLE PETRI

From the Division of Rheumatology, Johns Hopkins University School of Medicine, and the Department of Epidemiology and Preventive Medicine, University of Maryland School of Medicine, Baltimore, Maryland, USA.

Conclusion. The subset of patients with SLE and SS has a distinct clinical and laboratory phenotype, with a higher frequency of older white women with photosensitivity, oral ulcers, Raynaud?s phenomenon, anti-Ro antibodies, and anti-La antibodies and a lower frequency of renal disease, anti-dsDNA antibodies, and anti-RNP antibodies.
===

[sage]

http://lup.sagepub.com/content/19/2/197.abstract

D. Xu et al


Sj?gren's syndrome-onset lupus patients have distinctive clinical manifestations and benign prognosis: A case?control study


In conclusion, different from SLE-only patients, SS/SLE patients have distinctive clinical manifestations and benign prognosis that require less vigorous treatment with glucocorticoids and/or immunosuppressants. Lupus (2010) 19, 197?200.

Lupus journal feb 2010