Lupus UK post yesterday on Face Book - Researches say lupus sufferers should get their heart valves checked.

[Wendy39]

Just incase any of you missed this Lupus UK post on Face Book yesterday.

lupusnewstoday.com/2017/05/...

[Lupiknits]

Thanks Wendy. I had a heart ultrasound when first diagnosed with something auto immune. All was fine. I have a heart murmur they are not concerned about. This is an interesting piece of info.

[Bronagh2015]

Thanks Wendy, I've just being diagnosed with valvular heart disease but thankfully it's mild at the moment.

[Wendy39 in reply to Bronagh2015]

I'm sorry to hear that. 😪 This disease brings so many issues doesn't it. x

[Bronagh2015 in reply to Wendy39]

Honestly......it's never ending!! But sure we'll keep battling on Wendy ☺️

[Barnclown]

I'm like lupiknits: i was born with a heart murmur. And then I was diagnosed with infant onset lupus.....so I guess all this fits with the article in your vvvvvv important link.

And I've suffered with dysautonomia signs & symptoms all my life...these have regularly flared for long periods of time. But the NHS never seemed the least bit interested or curious....except for the ENT consultant investigating my persistent vertigo & tinnitus in the mid 1980d (which are now responding positively to hydroxy+myco+pred+ etc etc😉)

When rheumatology recovered my infant onset lupus diagnosis over 6 years ago, I had standard baseline tests (cardiac, lung & nerve function). My heart murmur was noted, but consider not severe enough to warrant monitoring. My gp ordered a 48 hour ambulatory ECG: again, irregularities were noted, but considered not severe enough etc etc. Last year my abdominal aorta was checked by ultra sound because of my familial EDS history (ruptured aorta & early onset heart disease)

🤷‍♀️ So, i am simply waiting for the day my heart issues become Topic of the Time....the past 6 years have basically been all about firefighting: concentrating on whichever set of my chronic multisystem signs and symptoms is more severe...with referral to relevant clinics for investigations, active diagnosis, treatment plans & monitoring ongoing.

My feeling is that the significance & severity of my multisystem debilitation reflects the dangers of living without the right daily systemic meds for SLE. Yes, I spent those 4 decades in the diagnostic wilderness conscientiously self-help lifestyle managing my multisystem signs & symptoms...and being treated in emergencies + diagnosed with secondaries....but I also spent years on meds that barely helped at all and actually did harm (prescription NSAIDs , opioid analgesics, PPIs & domperidone etc etc) while fighting chronic issues superficially

Thanks for bringing this up, Wendy...you've given me an important reality check! 👍👍👍👍

🍀😘🍀😘🍀😘 coco

[Natura]

Interesting, as when I was told when I was younger I have a mitral valve prolapse. Last time I saw my GP, he said he didnt hear anything. But, i feel my heart race and do weird things lately. Not that they can do anything about that anyway, right? i am waiting for my good insurance to kick in july 1st.

[johare]

Hi Wendy, Thanks for posting. Ive had electrical heart problems for sometime, which is well controlled. Only recently after yearly echos did the suggest tricuspid valve problems. Only mild and whether this would have been present without the Lupus who knows. But I'm glad I was picked up.

[Wendy39 in reply to johare]

I'm sorry to hear you've had heart problems. I hope you are well taken care of. I think it's important we're all aware of these kind of issues, just incase. x