I know sjogrens may not directly affect the heart but more indirectly. But thise that have heart problems. How did u fix them?
Hi ttdub,
What kind of heart problems are you experiencing?
I have always felt my heart problems are associated with Sjogrens but when I mentioned this to my Rheumy on my last visit he said that there is no case studies or clinical trials that link Sjogrens to heart problems especially Atherosclerosis.
He also said that if I had SLE (Lupus) then there is a very great possibility that the Lupus has hardened and inflammed the arteries and caused aggressive premature Atherosclerosis, but this is not possible with Sjogrens.
He did admit that there are hundreds of trials and clinical studies regarding Lupus and Atherosclerosis, but hardly any regarding Sjogrens and Atherosclerosis and in that case he cannot commit and say it's my Sjogrens that is causing my Premature Atherosclerosis.
I hope this helps a little.
I've had irregular heart beats since I was about 25 years old (I'm 48 now). Since on the Plaquinel I've had fewer irregular heart beats and the ones that I do get are much more mild and shorter then before the Plaquinel. Dunno' what the connection is .. but there is definately something.
I have just started having some irregular heart beats. My son has been dealing with this for years, and they never tell him what it is.
susanep :)
I have been told by my rheumy and cardiologist (both from Johns Hopkins) that ALL rheumatic disease (Sjogren's included) can cause accelerated atherosclerosis.
I also have severe autonomic neuropathy, which includes heart rate, arrhythmias, BP, etc. I have a pacemaker as a result of some of these problems and medicine for the rest. Now these are certainly neurological problems (autonomic), but it is said to be manifestation of sjogren's.
Quote from: anita on February 01, 2011, 06:15:37 AM
I have been told by my rheumy and cardiologist (both from Johns Hopkins) that ALL rheumatic disease (Sjogren's included) can cause accelerated atherosclerosis.
I also have severe autonomic neuropathy, which includes heart rate, arrhythmias, BP, etc. I have a pacemaker as a result of some of these problems and medicine for the rest. Now these are certainly neurological problems (autonomic), but it is said to be manifestation of sjogren's.
It shouldn't be allowed all this conflicting information, in the end who do you believe.
Hello Ttdub ,
I've had irregular heart beats for over 20yrs. I just took off a heart monitor I
wore for 24hrs. I also have chronic pericarditis caused by my SjS. A couple
times a year my irregular beats get so bad and last for days. My doctor puts
the monitor on me, but never seems to help the problem :(
I will know in 1 week what the monitor reveals.
I hope you get help and feel better soon :)
Hugs and Blessings to you
Your Heart Friend
Duffy Dog ;D
ttdub: I can understand the dillema you are going thru, not knowing what is causing some of the serious symptoms you have and whether you have sjogren's or possible heart problems. Have you taken a look at any side effects that can occur from taking certain meds? It sounded like some of your health problems happened after taking a med? You could check that out by going online and finding if there is any lupus type reactions with the meds you mentioned? I wish you some relief from the anxiety of not knowing what is going on and further help from the medical profession!
Cremer,
I also have antiphospholipid syndrome (APS) which is yet another autoimmune disease. If I had my say (not my doctors) I would guess that the APS is more likely to be responsible for my moderate atherosclerosis (for my age) and my mildly prolapsed valves (3 of them). I think they would agree that both AI diseases contribute to the heart problems. And I don't have Lupus...so it's not that.
It is widely discussed here that neurological manifestations (and that means autonomic neuropathy included) are a part of Sjogren's. Who really knows whether it is or yet another disease process. It is common to have more than one AI process...or even other metabolic disease at the same time. There are MANY things yet to be learned and defined about Sjogren's.
To tell you the truth, I have a VERY positive lip biopsy indicating SjS, but I wonder sometimes whether my problems go much deeper than SjS and that the "sicca" is just a symptom of another bigger problem.
Regardless of where heart problems come from, they must be properly diagnosed and treated.
Mr Duffy: good luck with the monitor results! Waiting is no fun. I am waiting to hear the results of my latest cholesterol blood test - truly don't want to have to take more statins! :(
cremer and all:
Here is an article that apparently spells out the association between accelerated atherosclerosis and (some) autoimmune disorders. As you will see, they don't hold much association with heart problems and Sjogren's Syndrome. Should I laugh or cry about that (since I can't cry it's a non problem!)
You will see that the article has been cited by quite a few new articles on the topic. See what you think!
Accelerated Atherosclerosis in Autoimmune Rheumatic Diseases
http://circ.ahajournals.org/cgi/content/full/112/21/3337
This article has been cited by other articles:
Circulation. 2005;112:3337-3347.)
? 2005 American Heart Association, Inc.
Here's a good article on cardiovascular autonomic dysfunction, since many here have discussed heart rate/rhythm and BP problems.
If you notice one thing about even very technical articles/studies, is that they may state there is a significant occurrence of SjS patient with these manifestations...but NOT proof of HOW SjS has actually caused these to occur.
http://rheumatology.oxfordjournals.org/content/43/1/95.full
Like I said, I think there is so much more to be learned about Sjogren's.
Quote from: Carebear on January 31, 2011, 10:42:16 PM
Hi ttdub,
What kind of heart problems are you experiencing?
My heart will start racing and pounding really hard. My heart rate will skyrocket! Then slowly it comes down.
The very important thing is in a heated environment is that you does not expose yourself to extreme temperatures that some of the hot yoga studios heat to otherwise you could put yourself at unnecessary risk.....
Thankyou Anita and Sage, both articles made fantastic reading and just goes to show that alot more research needs to be done on Sjogrens syndrome and it's function with the heart.
Anita I also agree that antiphospholipid syndrome (APS) plays a much more important role then Sjogrens, just the nature of blood clotting must be such a concern. When I went to my rheumy last time he gave me a Lupus anticoagulant test and it came back negative so hopefully I do not have APS.
Take care.
Mick
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?
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 ;D
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! :o
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.
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!
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.
Anita: Thanks for your generous response. I have to take this slowly when thinking it through (and still need my morning cuppa) :D 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
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. :)
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).
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 :o
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......"
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.
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.
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
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.
===
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
Thank you all for the great replies! I am going to start wearing a heart monitor. I guess the goal is to find out what's wrong. The problem is that I haven't been diagnosed with sjogrens yet (I'm close). I will have to find out what's wrong then hopefully they will link it to possible sjogrens
Best of luck and please let us know the results.
All the best ttdub - let us know how it goes!
ttdub
Do you have a thyroid issue or are you on synthroid or anything like that? Overmedication with thyroid replacements can cause racing heart beats....as can hyperthyroidism.
I have thought that my heart issues have some correlation with the Sjogrens & Stills Disease that I have. Have mitral valve prolapse with regurgitation, and accelerated (for my age) coronary artery disease.
The cardiologist makes no connection between the autoimmune problems & the heart disease. The rheumatologist is suspicious.
I have fabulous HDL & LDL levels, eat healthily, still exercise most days----the cardiologist has done a Berkeley lab to check for genetic "things" that might have caused the coronary artery disease acceleration. I still think it is yet another gift from the Sjogrens:)
Quote from: susan on March 14, 2011, 12:31:51 PM
I have thought that my heart issues have some correlation with the Sjogrens & Stills Disease that I have. Have mitral valve prolapse with regurgitation, and accelerated (for my age) coronary artery disease.
The cardiologist makes no connection between the autoimmune problems & the heart disease. The rheumatologist is suspicious.
I have fabulous HDL & LDL levels, eat healthily, still exercise most days----the cardiologist has done a Berkeley lab to check for genetic "things" that might have caused the coronary artery disease acceleration. I still think it is yet another gift from the Sjogrens:)
Mine worked the other way Susan, my rheumatologist said there was no connection between my Sjogrens and my heart disease but my cardiologist done a few CT scans and said that quite a few of my arteries throughout my body were inflammed and via CT scans he decided to pick and choose what arteries to use for the grafts.
I still say my Sjogrens is to blame and it acted more like SLE (lupus) acts on the heart but it's to involved for the docs to spend time discussing it.
Cremer,
I think you are right on target when you say that the Sjogrens "acted like" Lupus & in so doing caused the arteries to plaque up.
You are also right when you mentioned that the docs don't have time to sort it out! I suppose it doesn't really matter (at this point) since it is managed the same way regardless of the cause.
Thanks for sharing your experience! Makes me feel saner:)
I know absolutely nothing about this subject, but I am with the people who say to see a cardiologist for any heart issues. The bottom line is that it really doesn't matter what is causing the irregular heart rate at the beginning as the important thing is to get tested and get the heart rate under control.
Also, any autoimmune disease revolves around inflammatory reactions in the body. Just about every type of organ/tissue, etc has connective tissue in or around it so that is always somehow involved. The thyroid affects the heart big time and the lipid level. It just goes on and on.
All we can do is see the right doc and get medication, right diet, get meds for high BP, diabetes, thyroid disease. The list goes on and on. All this stuff ultimately affects the heart and the vessels. And, don't forget being overweight---that is really a biggie.
So if any of us live and breathe on this earth we are prime for heart issues, especially with the AI issues and a history of heart issues in the family. I think that possible the chicken or the egg will cause researchers to scratch their heads for a long time.
Also, a lot of the rhuematologists that I have talked with are not always interested in some of the more complicated parts of the autoimmune reactions. They like to keep it simple. I really think that if they can keep their practice centered around RA and fibro, etc they feel more in control. The first rheumy I had just looked blank when it started getting too deep. Just my humble opinioin.
This was a very interesting thread folks. Thanks for all the info. Irish ;D
I haven't seen the cardiologist but the doctor said I have a mild disrythmia from the results of my heart monitor I've been wearing.
What type of dysrhythmia do you have slow or fast. After I had my bypass about 2 days after for some reason my heart beat rose to 200 beats a minute and I went into tachycardia, I managed to self reverse this myself before the doctor came, and it has never occured since but it was scary.
Has the doctor taled to you about pacemakers?
Hi, I'm new to this site. Please excuse the intrusion. I hope I'm not breaking any rules by cutting in here. I think I have some input for you.
I've had Sjogrens for about twelve years. I, too, have heart problems. In my case it is valve disease, and tachycardia. My doctor is also saying it can't be caused by Sjogrens. I believe it is. I had open heart surgery four years ago to repair my mitral valve. At that time, my doctor told me it would last for about ten years. Now, they are telling me it won't last even another year, and I'll have to have a mechanical valve inserted. Also, only the Mitral valve and the aortic valve were affected at that time. Now, the bicuspid valve is affected, too.
On top of this, last night, I think I had a seizure. I am so tired of doctors, I didn't even bother to call the squad. Sometimes, you just need a break from it all, you know?
Toni
In regards to tsalyers100 remarks, last year I had a heart attack which caused me to have Mitral Valve Regurgitation (I have not had repair surgery yet). In addition to this I was only diagnosed last year with SjS, Fibro, Raynaud's & Coeliac Disease. For more than a decade I kept telling my doctors(s) that there was something wrong (I gave them a list of what was bothering me) & nothing was done & I was never tested for anything beyond diabetes. Because of being ill & in chronic pain for many years I practically lived on Advil (NSAID's). I believe the Advil combined with my illnesses created my heart condition(s), as I exercised frequently & ate properly + I never showed heart abnormalities in the past. My cardiologist, rheumatologist & internist all stated that my illnesses did not create my heart attack, etc. To this I say that they are wrong, as too many people I've known with auto-immune illnesses have had cardiac issues.
My overall experience with physicians has been far from great & I find that too many have difficulty in going beyond what they read in their text books or medical journals. Somehow we patients need to push our doctors to open up their eyes and see beyond what is right in front of them.
jcbritguy, I am wondering how many people will say that the Advil should have helped to prevent the cardiac problems because of its anti-inflammatory effect.
Autoimmune issues can cause some of the heart issues that is for sure, but I think you would be hard pressed to find many cardiolgists who are of this opinion. It would sure change the treatment of heart disease if they proved it was true.
Meanwhile we all must follow the cardiologists treatment plan and maybe do a few little things from the holistic medicine plans--- making sure that our doc approves the safety of any product we use. irish ;D ;D
Irish, all NSAIDS (which Advil/Ibuprofen is a apart of) after heavy & prolonged use can create heart damage. I myself used Advil nonstop for 25 years as I was in nonstop pain. The interesting part is that I told the physicians I had been seeing about this & known had anything to say.
Also, I never mentioned anything about Holistic medicine nor not following the treatment plan.
I found out that I have: Supraventricular tachycardia
Glad you have an answer...and one that is easily manageable.
Quote from: anita on April 06, 2011, 05:03:21 PM
Glad you have an answer...and one that is easily manageable.
No doubt! If they were going to tell me nothings wrong. We were going to have a problem. I'm so sick of hearing those words.