Author Topic: Does Sjogrens affect the heart?  (Read 4142 times)

kellyptyler

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Re: Does Sjogrens affect the heart?
« Reply #15 on: December 29, 2010, 04:40:22 PM »
They never have figured out what my heart problem is...I just know I have an inverted T wave on my EKG and I'm on Metprolel to keep my heart from beating too fast.....it all started as the exact same time as my auto-immune problems. I also know the worse my flare is the worse the heart palpitations are. No one has told me why.

cremer

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Re: Does Sjogrens affect the heart?
« Reply #16 on: December 30, 2010, 04:46:10 AM »
Navydad: My Cholestral isn't that bad it was 5.8 last time I had it checked, I think anything around 4.8 is good. I really need a Lipid test doing. I think thats what it is called.

Sage: My cardiac surgeon is already in discussions with my Rheumy and are considering the problem, I would just love to know what they are discussing. I just really hope they find out why I have this accelerated atherosclerosis as I'm only 43 years of age. Thanks for taking the time to help.

Anita: Thanks for the links, I'm off to read them now.

kelly: Reading your post sent a shiver down my spine. I was first Dx with aggressive heart disease in March this year due to my first ECG which showed an Inverted T wave the same as you. I was also Dx in March with Primary Sjogrens Syndrome. Hope you find out whats causing yours soon.
« Last Edit: December 30, 2010, 04:47:53 AM by cremer »
Male 47 yrs old
PSjS (Positive SSa & SSb ANA 1:2560, Possible Fibromyalgia and CFS, Triple heart bypass Feb 2011, IBS, brain fog, joint pain, mouth and nose ulcers, paronychia, headaches, and fatigue, Very low WBC count.
Medications : Aspirin, Plaquenil, Bisoprolol, Simvastatin, Vit D, Iron.

sage

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Re: Does Sjogrens affect the heart?
« Reply #17 on: December 30, 2010, 03:47:37 PM »
cremer: I hope you can find some answers and also hope that the "rheumy" and cardiologist will share some of their thoughts with you.  I am originally from the UK and can understand that sometimes the health system there does not encourage patients to be pro-active.   I sent you a little note which you might find in your sjogren's mailbox.  All the best!

Chickpea

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Re: Does Sjogrens affect the heart?
« Reply #18 on: December 30, 2010, 07:59:48 PM »
Hi Cremer

I'm really sorry to hear that you've had two major health shocks in one year, let alone in one month.  I hope that my experience might help and maybe reassure you.

I had two valves replaced - mitral and aorta - in September and I'm 50.   My heart problems started when I had rheumatic fever at the age of 3.  It was clear immediately that my heart was damaged but it wasn't until they could do echo scans on hearts (1978 in my case) that the cardiologists could see what the problems were:  a calcified aorta and an incompetent mitral valve. 

I was expecting surgery in my 60s but everything degenerated quite fast over the past year or so - again, I don't know whether SjS made a difference.  The pre-op angiogram showed my arteries in tip-top condition so I don't have the furring problem you mention.  However, while one cardiologist was talking me through the echo showing the damage to both valves he said 'and there you can see the typical SjS calcification of the aorta'.  That was the first I'd heard of a connection with SjS; I thought the damage was all caused by rheumatic fever.

The surgery was pretty straightforward and recovery better than expected - I have pretty severe SJS-connected neuro issues which complicated everything.  I did have a big SjS flare a few days after the operation so make sure your cardiologists are prepared.  The anaesthetists knew all about SjS and took good care of my eyes and general hydration.

I'd had surgery before but nothing as major as open heart.  In the event, I was pretty calm about it; I knew I had no choice as I'd already gone into heart failure.  If I'd known how straightforward it would be I wouldn't have worried much at all.  And I'll never be worried about any other surgery.  If you'd like to PM me to discuss it further please do.  By the way, I'm in the UK and this was all done on the NHS, bless it!

Thinking of you - Chickpea

cremer

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Re: Does Sjogrens affect the heart?
« Reply #19 on: December 31, 2010, 03:29:52 AM »
Chickpea many thanks for this reply.

When did you find out that you had Sjogrens was the mention by your cardiologist 'and there you can see the typical SjS calcification of the aorta' the first time?

I'm glad and confused he could see it. I wonder if it shows up differently between normal plaque build up and SjS calcification.

The reason I ask is becuause my LAD is 100% blocked and according to the cardiologist has been for quite some time. After 2 failed retrograde angioplastys
to drill the artery out the calcification is so hard they cannot unblock.
Male 47 yrs old
PSjS (Positive SSa & SSb ANA 1:2560, Possible Fibromyalgia and CFS, Triple heart bypass Feb 2011, IBS, brain fog, joint pain, mouth and nose ulcers, paronychia, headaches, and fatigue, Very low WBC count.
Medications : Aspirin, Plaquenil, Bisoprolol, Simvastatin, Vit D, Iron.

Chickpea

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Re: Does Sjogrens affect the heart?
« Reply #20 on: December 31, 2010, 12:43:41 PM »
Hi Cremer

I was diagnosed with Sjogrens two and a half years ago.  I had a diagnosis of Primary Progressive MS for a couple of years, and then I was in diagnosis 'limboland' until a rheumy made the connection between my neuro symptoms and dry eyes/great thirst.  (I tell my story in more detail on the staff profile page.)

The cardiologist's comment was quite a surprise because I thought my cardiac issues were completely separate from SjS.  Now I'm wondering whether the rheumatic fever I had when I was 3 was my first AI condition, rather than a stand-alone illness.  I developed endometriosis in my mid teens, and that's now regarded as an AI condition.  It seems AIs come in clusters.

Next time I see the cardiologist I'm going to ask about the SjS calcification, and whether it's different in quality or just situation. Let's keep swapping information - it's great to know someone out there has similar problems.  Not that I'd wish this on anyone!

Do let me know if you need any information about cardiac surgery, recovery etc.  I found the hospital info sheets and the British Heart Foundation booklets very helpful, but they didn't cover everything.

Take care - Chickpea

ps Where in the UK do you live?  I'm in Brighton.

cremer

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Re: Does Sjogrens affect the heart?
« Reply #21 on: December 31, 2010, 01:29:57 PM »
I agree lets swap info as and when. I should be seeing my Rheumy on the 14th Jan, but this will be cancelled if my date for the triple bypass comes through after this date.

I live in Nottingham.

Speak soon.
Male 47 yrs old
PSjS (Positive SSa & SSb ANA 1:2560, Possible Fibromyalgia and CFS, Triple heart bypass Feb 2011, IBS, brain fog, joint pain, mouth and nose ulcers, paronychia, headaches, and fatigue, Very low WBC count.
Medications : Aspirin, Plaquenil, Bisoprolol, Simvastatin, Vit D, Iron.