Heart Issues from SjS??

[mews]

Hello All,

I have just been diagnosed with some heart issues that really took me by surprise. I told my primary care Dr I was having trouble breathing, and some pain in my chest, also my blood pressure has been high on and off. So she sent me to the cardiologist who in turn did an EKG which was not normal, then we went onto an echo and stress test.

The outcome was surprising..he started the news with a... pericardial effusion (fluid around the heart), then went onto the muscle on the left side of my heart has increased in size and thickness, and the right ventricle is borderline enlarged. Also I am in grade 1 heart failure (Diastolic dysfunction) and I have Regurgitation in my Mitral valve,Tricuspid valve and Pulmonic Valve.. what ever that is.....
I also have Pulmonary Artery Hypertension 36 mmHg. 

I was like are you joking when did all this happen?? He feels strongly this is from SjS or Lupus. I didn't know Sjs had heart involvement, does any body know about this..I do know one thing, that this came on fast and I feel worse every day and I am scared.

Stay Well all
Mary

[jazzlover]

That IS scary for it to come on suddenly.
I've had mitral valve problems with regurgitation for years. I also have A-fib now.. as of 3 yrs ago.
Hope you get some help for your problems!!

[Cheryl]

Mary,
How frightening this must be for you!  I'm glad that you are under the care of a cardiologist now.  Several of our members here have heart issues, so I'm sure you'll find a good support group.  Hang in there, and please keep us posted.
Hugs,
Cheryl

[Shade]

Mary,

Wow...how frightening.  I'm sorry to hear this.

Wishing you the best!

Shade

[engy]

I'm glad you are being seen by a cardio. I'm not sure what meds you are on but look into the supplement d-ribose. It is used for energy (thats why I use it) but in other countries is used a lot for heart diseases.

Good Luck, Carie

[Calli66]

I just developed AFib this year, and I'm thinking the same thing---Sjogren's might be causing my arrhythmia problems. I started getting an abnormally slow heart rate right about the time I was diagnosed with SjS.

It's well known that the SSa and SSb antibodies have an effect on fetal heart rhythm/conduction, and some new research being done might show that it affects adults with SjS, too.

Here's an article:
"Immunological basis of the cardiac conduction and rhythm disorders" at
http://eurheartj.oxfordjournals.org/content/22/10/813.full.pdf

Some dietary changes can help, too. I have started drastically limiting salt (I was overdoing it way too much before), increasing potassium (lots of low salt V8, coconut water, bananas, etc.), supplementing with magnesium glycinate. All these balance electrolytes, which are very important to calming down the weird heart beats. Also taking L-Carnitine, (D-Ribose when I exercise), and Taurine.

I haven't found that my cardiologist wants to discuss the connection between autoimmune and heart issues, but he did admit that there WAS one. At least he went that far.

Calli

[sass]

Hey mews,

I am with you! Had no idea that it would cause these issues.  It is very scary!  I am glad that you posted this for all to see.  I too am having the exact symptoms that you mentioned.  Guess I should get it checked out.  I had a work up in 2005 and all was very well then.  So, if something is there, then I will be surprised as well.  My blood pressure is nearly impossible to control right now.
Had a lung X-ray 3 months ago and it was clear, so my breathing issues may be heart related.  I feel very heavy chested.  Like I have a weight on me and I have heavy breathing with more difficulty with slight exertion.  It is more in the center of my chest and some discomfort as well. 

I appreciate you letting us all know! 

sass

[mews]

Thank you all for your kind thoughts, these things never fail to amaze me! I'm wondering if anyone with heart ailments on this forum knows if it's related to this disease. It's unnerving to now have another organ start to go south on me, first the bladder then the GI system, now the heart!

Thanks for all your support as usual.

Stay Well
Mary

[mshistory]

Oh my...I had a slightly abnormal EKG a few months ago, but because it seemed so minor (according to GPs) I haven't followed up with a cardiologist. I'm thinking that perhaps I should since I have some of these symptoms as well.... thanks for this post.

I hope your cardiologist has a good treatment plan for you 

Sharyn

[really?]

I;m layinghere waiting to hear to hear the results of my heart echo, chest xray showed some more damge to my lungs,, fromn what,, or what kind of damage,, they dont know,, well thatsnot very comforting,, its maddening,, and i;m getting more mad by the minute,, its horribe when we get all these weird symptoms and little by little we start to show more and more damage,, and now we donthave any answers from teh medical community

[mews]

What's scary is that my primary Dr said that my EKG was normal and it wasn't..Sharyn you should follow up with a cardio Dr to be on the safe side.

[Chickpea]

Hi Mary

I'm one of the Sjoggies Cheryl mentioned who has had heart problems, so if there's anything I can do to help please don't hesitate to PM me or post questions here.

I had rheumatic fever when I was 3 and two valves - mitral and aorta - were damaged.  I was told I'd need surgery when I was in my 60s but last year when I was 50 I went into heart failure.  The valves were replaced last September.  Most of the damage had been caused by the rheumatic fever but the cardiologist also showed me evidence on the cardiac echo of calcification he said was caused by Sjogren's.  I had another echo today because they're keeping an eye on it.  I had an angriogram pre surgery which showed no sign of damage to veins etc, or anything else that SjS might have caused.

Try to stay confident.  My experience of cardiac surgery was very positive and life with a functioning heart is a lot easier!

Thinking of you - Chickpea

[Luna]

Im so sorry you had this happen to you. Yes, I did know that sjogrens can cause heart problems. I can only imagine your shock and horror at what he was telling you. Im so glad you found out. I hope you get through this ok.

Rebecca

[mews]

Chickpea,
I am so sorry you went through so much in your life time wit your heart, always knowing that there will be a problem at some point, that's pretty unnerving for sure.

It is so interesting to hear you say this about the calcification being caused by Sjs. I am also being tested for scleroderma , what I have is classic for that, so I am a little worried. I am going to see a new Rhume who specialise in all of this and she will send me to a Pulmonologist for more tests. Did you have a catheterization done? I am worried or more like scared about these types of tests!!
Thank you for being there, it is a comfort for sure!

Stay Well
Mary

[really?]

Just dont let them blame everything on SS,, I have my suspicions that some of us suffer from other conditions that are way to easily shoved down our throats as being part of SS,,, As was once said,, trust but verify