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
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!)
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.
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.
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.
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
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!
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.
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
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.
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".
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
Thanks Maria. I would love to hear what they say. I'll be anxiously awaiting your posts after the conference.
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
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.
Yes, I started having heart problems the exact same time I started with the Auto Immune trouble. My T wave is totally inverted in my EKG, but my rheumy says they're not connected...meaning the heart and sjogrens.
My PCP sent me to a cardio doctor and because of the EKG he did a heart cath and said I have no blockages, but he will not look into it further. He just says I have an abnormal EKG...well, I never did before...not until the Sjogrens. So, I'm still waiting to see my new rheumy.
Anita, did you find any more information about atherosclerosis at the conference? I'm asking because I have to do the treadmill test due to muscle weakness, and I'm a bit concerned.
Kathyx
I don't have CAD. I have A-fib and MVP with regurgitation. I also have a mild thickening of my heart wall, which my dr says is probably from SJS.
Every one of my doctors (2 cardios & neuro/rheumy) at Hopkins say that Sjogren's (and other AI diseases) can increase atherosclerosis. It also can be responsible for autonomic dysfunction (heart rate and BP problems), and cardiac vasospasms (both of which I have also).
Glad you are being worked up and getting the treadmill test. Are they doing just the treadmill, or stress echo? The stress echo is where you do the treadmill while hooked up, but they also do an echo before & immediately after to look for changes.
Let us know how it comes out.
Hi Anita
They are doing the stress echo. Interesting that heart rate and BP can be affected too. My heart rate is always fast, and my BP is high, even though I am taking meds for it.
Will let you know how it goes.
Kathyx
I'm so glad this thread was bumped...I've been having chest pains (again) and given my age (32) I'm always tempted to blow it off as just inflammation. I sometimes get irregular heartbeats, and had one abnormal EKG that wasn't really alarming to my drs. I'm going to make sure my rheumy knows about it to see if I need to see a cardiologist.
Approximately fifteen years ago, I had noticeable symptoms of Sjögren's Syndrome -- dry mouth, particularly. But what the heck, there were no treatments, so why bother?
Two years ago, still no Sjögren's Syndrome diagnosis or discussion with any doctor, I started having stable angina when I walked uphill, not too often, always resolved if I stood still or walked slowly.
A year ago, I woke up with crushing chest pain, level 10, could barely take a step, called an ambulance to get to the ER. The upshot: It was an atrial fibrillation episode, that resolved with an electric shock to the heart. I was in the hospital two days, and back to teaching my class in four.
I also have mitral valve regurgitation as well as aortic stenosis, neither to any highly critical degree. In addition, the left side of my heart is thickened. My cardiologist keeps reminding me that my heart is in terrific shape. Blood Pressure is normally about 110 over 62 first thing in the morning, or after resting. I could exercise regularly in the aerobic zone, with a couple of minute in the anerobic zone. At that time -- 1/2011 -- I passed a nuclear stress test with flying colors, by staying in the aerobic zone for the required length of time, less than my daily exercise amount.
I eat according the CHOLESTEROL DOWN book by Janet Bond Brill, a book that got an *average* of five-star reviews. It's simple, it's based on research, and it works. My cholesterol numbers were not fantastic, but triglycerides were okay, and my total plasma homocysteine is below 8, which is the middle of the range.
I also have the crease. Used to have two, in one ear lobe, one in the other.
This was the picture from about June 2010 to June 2011. I'll have a checkup in two weeks. Not sure what has changed because of Sjögren's and lack of daily workouts on the exercise bike. I'm still on the diet, except less oatmeal.
Although my father died of heart disease before he was sixty, I don't feel as helpless about heart disease as I do about cancer.
Soycoffee
I didn't know Sjogren's could cause a fast heart rate.. Mine has always been fast, any where from 100 to 115 is normal for me.. I also have palpitations. Sometimes it can feel like a slight fluttering then other times it feels like it flip flops.. It's an uncomfortable feeling..
I was diagnosed with Wolff Parkensons White Syndrome at 19yrs old. Had an ablation at 22yrs old. I was then told I had MVP as well. But for years all was fine. No tach. no skipping no nothing. When all this kicked in so did the heart again. I thought for sure the WPW came back. Went back to my cardio. and he said no, it didn't come back and they said it was PVC's and to pretty much just deal with it :( I do go twice a year and get an echo. just to make sure all is ok.
Quote from: Iris on January 14, 2012, 03:48:53 PM
I didn't know Sjogren's could cause a fast heart rate.. Mine has always been fast, any where from 100 to 115 is normal for me.. I also have palpitations. Sometimes it can feel like a slight fluttering then other times it feels like it flip flops.. It's an uncomfortable feeling..
-
You need to see a cardiologist or your family doctor! You should NOT have continual tachycardia (100 beats or over). It is DAMAGING to the heart.
It's been that way all of my life.. Every doctor i've ever seen knows it.. I used to take Inderal for it but since I developed breathing problems I can't take it anymore.. They have never offered anything else for it..
I was just in ER this week for chest pain. After EKGs x-rays and blood work....followed by more blood work six hours later, the doctor dx me with an esophageal spasm. He said it most closely mimics a heart attack. I was just getting over an upper respiratory infection and I have read that the esph.spasm can follow URI. Then he proceeded to tell me that my EKG shows changes since my last one there 5 years ago. He said I have a partial right bundle branch block and it shows differences since my prior EKG, which also showed rbbb. I don't have a lot of recall about the EKG five years ago, but it does seem like I talked to my PC doctor about a rbbb and he reviewed my EKG and said it was nothing to worry about. I have looked it up online since my latest ER trip. Some sites say nothing to worry about, others scare me. Wondering whether to go back to PC and get referral to cardiologist....anyone have anything similar?
If I were you, I'd ask for a referral to a cardiologist. It is so typical of ER docs to say esophageal spasms when they don't know or something else isn't immediately explained from the EKG. It's the 'catch-all' diagnosis for chest pain when it's NOT a heart attack. Esophageal spasms do feel EXACTLY like a heart attack. There is a test though to confirm. The test is called Manometry. They insert a probe into your esophagus (via nose) and measure any spasms (if they occur).
It might very well be esophageal spasms, but you should know...not guess. Especially since you have the R-bbb history. I would think it be best to have a more thorough cardio work up...like a stress echo or reg. echo to start with.
So please consider getting a referral to a cardiologist...to assess the changes in the R-bbb and further evaluate your chest pain.
I was told once that it was esophageal spasms (because they couldn't see anything else on the EKG). I had the esophageal manometry and it was completely negative. Then my stress echo was positive. After a heart catheter...and my other history, it made for a better diagnosis of cardiac vasospasms. Still spasms, but of the main arteries not esophagus. Although, treatment is very similar...long acting nitrates or nitro, and a calcium channel blocker.
Quote from: Iris on January 15, 2012, 08:06:45 PM
It's been that way all of my life.. Every doctor i've ever seen knows it.. I used to take Inderal for it but since I developed breathing problems I can't take it anymore.. They have never offered anything else for it..
maybe Verapamil would be good?
Let me tell you something I found out. Before I was diagnosed with WPW and had my ablation I had been to the ER and they said all was fine with an EKG. The last ER visit I argued with them. I was NOT fine by any means. I was pregnant with twins and this was NOT good. I was fainting with fast heart rates, skipping beats, pounding chest etc. I refused to leave until someone did something. Finally they had an actual cardiologist come look at me and my EKG. Right then and there I was diagnosed with WPW. I was then switched to a specialist who dealt with it. He told me that there are a lot of people who have WPW and if a Dr. (ER or Primary) doesn't know what to look for they will not see it.
I'm not in any way saying this is what anyone has, but things can be missed if not seen by a specialist. Wolf Parkinsons white syndrome isn't very common but commonly missed.
anita,
I also see doc's at Hopkin's, I see a great GI doc there his name is Dr Ravich, he found that I have those wonderful spasm's and a hiatal hernia. He also found that I have Barrett's esophagus. I now see a Neuro there, and a Urologist. The Neuro just did 3 skin biopsy's on my leg to see about my sensory nerves and also a sweat biopsy. I will find out this week about it.
I saw a cardiologist outside Hopkin's which I regret, and now I'm trying to get in to see there pulmonolgist doc.
I was told I have diastolic dysfunction, PAH, the left side of my heart is enlarged and thickened and a borderline right side enlarged ventricular hypertrophy, a mild pericardial effusion and last a trace mitral regurgitation...all this was such a shock to me when I got off the tread mill / echo. But now I would like to see the Dr's at Hopkins, not liking the one I saw. Do you see them at Bayview or down town?
I'm in the middle of everyone trying to figure this all out...one says it's the Sjs the other says it's something else. That's why I need to have all my doc's in the same place.
I hope you get all the answers you need, I believe your seeing the best doc's at Hopkin's, I haven't really met any that I don't like..except the med students I run from them...LOL.
Stay Well Mary
Mary,
I don't know the GI you see. My GI at Hopkins is Dr. Goggins. He's at Greenspring Station (only one of my JH docs at this location). I guess you had that (oh so wonderful) manometry, right? Gosh that was so uncomfortable. I do have a hiatal hernia also...and severe gastroparesis.
My neuro is Dr Birnbaum, who actually posted here on this site several years ago...looking to help people. He's actually both a neuro and rhuemy (only one in the country to be both) and devotes his research/practice to the neuro manifestations of Sjogren's. He's at Bayview.
I hope you can see a cardio there. Sounds like you could use a good cardio to follow your complex heart problems. I have two...Dr. Jones (reg cardio) and Dr. Nazarian (electrophysiologist--for my pacemaker). Both are downtown at the outpatient center (JHOC).
The med students are okay. ;) I actually did a case study for them this fall at Hopkins...spoke in front of 150-200 of them. They need to hear your story so they can learn...just don't let them treat you...LOL
Anita
I see the GI at his private practice in Lutherville so I don't have to go downtown, I also have gastroparesis but it's not sever, just enough to keep me at his office every two months...were trying to get the right meds down, right now nothings working.
Yes I did have that great manometry test and swallowed the radioactive eggs...loads of fun..LOL.
I will look into the cardiologist at JH and see if I can get in soon. I have been seeing no less than 2 doc's a week for the last 6 months. I am so done with being sick!!
My big question is and was a while back is..are my heart issues from the Sjs, they didn't seem so typical for this illness.
Stay Well Mary
I think they are, particularly the BP issue and PAH. Some of the other issues may be a result of the PAH (formally known as PPH)...at least partially. I think you would benefit from seeing a JH cardiologist.