Cardiac involvement

[anita]

Hi All,

I was wondering how many of you have had cardiac involvement as a result of Sjogren's.  My doctor at Hopkins (he's both a rheumy & neuro) told me that sjogren's (and other AI) can cause early atherosclerosis (I didn't know this).  I have extensive calcification (which the cardiologist says is form SJS of the aorta & illiac vessels.   After multiple bouts of chest pain lately, I just found out that my stress echo showed the front part of my heart has impaired pumping during exercise, which is a sign of clogged/restricted arteries.  I'm only 46 and have had some minimally raised cholesterol levels, but nothing awful.  I have had open heart for an ASD and aneurysm and then got a pacemaker for severe autonomic dysfunction, but we're talking about a heart attack looking for a place to happen, now.   

Have any of you had significant coronary artery disease that they associate with your sjogren's?  I've heard sjs can effect the blood vessels itself, but is this how?  I haven't seen much on the topic of heart related problems, so maybe it's not that common.    I'm going to the best source of info on this...YOU ALL.  Thanks in advance for your input.

Anita

[inga]

I have severe autonomic dysfunction and at my medical center, it sounded like they would not do a pacemaker.  Then again, I didn't think my cardiologist was very up on things either.  I plan to see a different one at some point.

I have diastolic dysfunction, minimally elevated cholesterol which I do not treat with meds, due to the neuropathy and myopathy I have.

I have several other cardiac abnormalities.  Yes, the cardiovascular system is attacked by antibodies, so are blood vessels.   I haven't had any cardiac tests done lately, but, I know from other things that athersclerosis is an issue.  Did you know that a diagnonal crease on your ear lobe is associated with coronary artery disease, and athersclerosis?  I have a big one and this flipped me out.

Then again, I have a genetic history of athersclerosis.

(It's really important not to eat sweets!)

[anita]

Inga,

I had to set the laptop down and go to a mirror and look at my ear lobes.  LOL    No crease.  I'm adopted so I don't have family history, but I have many symptoms lately (sometimes daily) and probably should have gone to the ER on several occasions as the chest pain is accompanied with jaw pain, squeezing feeling in the front of the throat and a little SOB.    I'm guessing an angiogram is the next on the list.  My cardio just happens to be out of town until Thursday, so I have a few days before things will likely get hectic with tests, etc.

I used to take Zocor for the cholesterol but had to stop due to neuropathy.   The pacemaker has been very helpful and if you have severe problems, might want to check into an electrophysiologist/cardiologist.  My heart rate would drop into the high 30's & low 40's daily.  Even with the pacemaker set at 60, almost 40% of my heart beats are paced.  Then of course I can still hit over 200 bpm at other times, thanks to the autonomic neuropathy.  Basically it has a mind of it's own.

I eat generally quite healthy, not over weight, don't smoke or drink, but have been disabled for years with severe neuro-complications of sjs, and APS.

[inga]

Yep, seeing a cardio is on my list.  Personally, I think I should be paced....my heart is totally irregular, and I too have dropped to the low 40's.  I didn't pass out and apparently that was this guy's criteria.

Also, I want this current thing with my low K and low Ca figured out.....this may be a kidney thing...I dunno.

Always something....always!!!

BTW, I have a crease.  Bummer.

[mac]

Yep, I heard about the crease thing some time ago and had to look, sure enough!  LOL  10 years ago dx'd with MVP and regurgitation. Father and grandmother died of MI.  I've outlived them both...only to be dx'd with SjS.  Fortunately, this life is brief no matter what you die from...the next one will be MUCH better.

[Dolly Dimples]

   Inga, I bet everyone reading this thread  immediately flew to the mirror!!
         I did,... plenty of deep creases , but fortunately none on my earlobe!

             Seriously tho., you and Anita seem to be in a bad place right now,
                  its easy to sympathize, but so hard knowing what to say in these worrying cases.

                     I do hope you both get the best of attention, and hopefully an end to your troubles soon.
                                 Take care and keep in touch,   Dolly
                                 

[inga]

I am trying to 'mind over matter' my creases away.  Not only do I have one, I have TWO....and they criss cross.  Oh well.  Don't expect me to give up my ice cream!

[Daisy1234]

Inga, I am right there with you in the ear crease category, I have two as well in each ear.  But I also have a family history of heart disease (father died in his 50's from heart disease and grandfather also died in his 50's from heart disease) and I am in my mid 40's now and have been on Lipidor for about 4 years now due to high cholesterol.  This seems to be strictly a hereditary issue as I am not heavy and I was very active prior to coming down with SJS and have always tried to eat healthy.  So for my part although I have severe primary SJS I would say that any chance of heart disease on my part is probably hereditary.  I am scheduled to get an Echocardiogram in a couple of weeks though since I have been having a bit of chest pain lately. 

Good luck to Anita and everyone here with all of the health issues.  Its great to be able to bounce things off of so many knowledgeable ppl.

[Poochie]

Hi Anita,
I don't know about the blood vessel problem, but I do have MVP and SVT and AT.  My cardiologist told me the last time I had my stress test that it's annoying, but if I'm mindful of the episodes and not let the tachycardia get to high, it shouldn't kill me.  Of wow!  That really didn't put any confidence in the dx.  After years of coping with the SVT (and a cardia ablation), then the atrial tachycardia followed by the return of SVT I guess he knows what he's talking about. I'm taking Coreg to control it and since he upped my dosage I've had fewer episodes, but those that I do get are still scary.  It is possible if the tachycardia takes off like it did before and I don't go for help to have the rhythm converted I could stroke out.  The last time they used the paddles to convert my 368 bpm.  Not the most fun thing to have done.  But the meds they were giving me just didn't work. 

And yes Sjs and autonomic dysfunction has a great deal to do with it.  Stick with Hopkins and the doctor you are seeing.  He sounds like a keeper.  Good luck.

Pooh

[inga]

Daisy,

I agree that not everything is Sjogren's.  We also have cardiac disease in the family.  I should be on Lipitor, but because I have PN and myopathy too, I have resisted taking it.  My ratio is only slightly high, so, I am trying with diet....I need to exercise more, but that is hard right now with the autonomic stuff, and pain.  To think I used to love to do competitive endurance sports!

I believe my 'creases' are hereditary.....the one risk factor you can't change.

[anita]

Of course, it can be easy to throw the sjs label on anything that happens, but it was odd that both the neuro/rheumy and cardiologist said the exact same thing (that sjs can cause early atherosclerosis) when this chest pain and SOB started.  Not to mention that extensive calcification has been mentioned for the aorta, as well as areas in the brain and joints.  That sounds like could logically be related (lack of moisture causing calcification/hardening of tissue). 

Oh well, maybe it's not very common.  Then again, I always seem to be "outside the box".

[magistramarla]

Anita,
  There is going to be an expert from Southern California at the conference with a talk entitled Heart Disease: The Impact of Inflammation and Autoimmune Diseases.  I'll ask her about your atherosclerosis.  I was also worried when my heart rate did strange things when I was exercising. 
I'm going to ask whether a heart health check-up should be a routine part of the work-up for SJS patients.
Marla

[anita]

Thanks Maria.  I would love to hear what they say.  I'll be anxiously awaiting your posts after the conference.

[Carolina]

Yeah, I have the crease BIG TIME.  The correlation between the crease and CAD was identified at the Framingham Heart Study, which is the biggest longest running heart study in the world.   Correlation isn't causation of course.  BUT  I have had three angioplasties and two stents....and the major coronary artery called the Widow Maker, was 95% blocked.  I was 57.  Already long on statins for genetically high cholesterol.

Inflammation is the number ONE cause of all damage to the arterial wall, which is what allows the cholesterol to enter the arterial wall and deposit.  Of course, it is totally logical that chronic inflammatory conditions of autoimmune diseases would correlate with CAD.

With all vascular problems for that matter.

For me the CAD was the first to be identified.  But as a kid with a zillion allergies, I was already heavily into autoimmune overdrive.

I had terrible angina, by the way.  Including UNSTABLE angina, which occurs while you are sleeping.  And was being treated for a hiatal hernia (which I did have but it wasn't the problem) and 'heartburn'.  Until a gastroendoscopy showed no damage to my esophagus that would create the level of pain I was experiencing, and I went immediately to the ER of the best heart hospital in Atlanta and got the diagnosis and immediate treatment.   I was months away from a major heart attack, with NO CLUE at all.   By the way, I could ace a treadmill test, just had a TON OF PAIN.  It was only the MRI with thallium markers that showed the lack of oxygen to my heart caused by the blockages.

We MUST ADVOCATE for ourselves, educate ourselves, and brave the entire process with mutual support and determination, and persist, persist, persist.

Carolina

[anita]

Carolina,

Thanks so much for the info.  It does make perfect sense that the inflammation sets the stage for the build up in the arteries.  I don't have a significantly high cholesterol, but if the blood vessels are already damaged, then it probably doesn't take much to clog up the works.  I can't have an MRI due to the pacemaker, but at least he could see a problem from the stress/echo, so we know how to proceed.   I was thinking the stress/echo would show up normal because I didn't have the chest pain during the test...who knows what it would have showed during one of the many, many episodes of chest pain, jaw pain, SOB, BP falling, and feeling that something is squeezing the front bottom of my throat.    Even though the treadmill didn't produce the chest pain, I paid a dear price of pain everywhere else...WOW.

Luckily I have great doctors at Hopkins, so I feel confident they will proceed in my best interest.  I would have had this resolved by now had I not dismissed it all together at first, then thought it was GI (my hiatal hernia--which I never had problems with), then GI sent me to the cardio.  I have a way of denying problems and making excuses.  Just hate to keep having more and more to deal with. 

Thanks again.  It always helps to have some sort of understanding behind the problem.