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Looking for Afib or Flutter with Autoimmune Systemic Scleroderma Help

Posted by patvo @patvo, Sep 4 9:57pm

I am new to this forum but have recently (May) been diagnosed with A flutter several months after spine surgery for severe spinal cord stenosis. I have a history of High BP and cholesterol well managed for several years but never anything like this attack. I also have a 26 year diagnosis of Limited Systemic Scleroderma, a chronic, progressive autoimmune disease with no cure. With this version, outer skin is not affected but any and all internal organs and connective tissue can be affected by fiberotic changes. As I have found out - Afib & flutter and other heart rate issues are also very common (but no rheumatology specialist mentions this). So at the end of April I noticed my heart rate was reading elevated at 145 which was alarming as it's usually under the 100 mark at 80-90. When it didn't come down I ended up calling EMT and they transported me to ED atn local University Hospital. Four days later I was discharged with DX of A-flutter and Congestive heart failure. Was on Eliquis for a month & transitioned to Xarelto and metoprolol but still reading 120+ everyday. I'm scheduled for an EP Ablation Supravent on 9/10. Long story,sorry! Is there,any one here especially with a connective tissue Autoimmune disease, with experience with the ablation treatment and how has it worked for you?? I'm concerned about the rate of failure with my patient cohorts and how best to ensure I'm getting appropriate follow up checking by my cardiologist. Any information or advice is gratefully appreciated. Thanks Patricia

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windyshores | @windyshores | Sep 4 10:28pm

I have lupus and very high anti-centromere indicating possible limited systemic scleroderma like you, as well as afib with heart rate up to 190 (but once or twice/year for a few hours), and stenosis at cervical and lumbar spine. 7 vertebral fractures at thoracic and lumbar levels. Unlike you I have low blood pressure.

My daughter has lupus and the rheunatologist sent her to cardiology with a new heart murmur and told her that autoimmune disorders can affect the heart. I myself have never heard this.

What level of spine was your surgery? I can tell you that I believe the alteration in my spinal structure and consequent crowding of my innards seems to be a more likely contributor to my afib than lupus, but who knows.

I do not have congestive heart failure despite 10 years of afib/tachycardia episodes. I am wondering how your congestive heart failure began.

Can you get that heart rate down without the ablation? Is there another medication to try, or a stronger dose? If not, I hope you find the best EP to do the ablation that you can find. The afibers forum might be helpful: https://www.afibbers.org/forum/index.php

Sorry I can't help more!

REPLY
2 replies
patvo | @patvo | Sep 4 11:46pm
In reply to @windyshores "I have lupus and very high anti-centromere indicating possible limited systemic scleroderma like you, as well..." + (show)
@windyshores

I have lupus and very high anti-centromere indicating possible limited systemic scleroderma like you, as well as afib with heart rate up to 190 (but once or twice/year for a few hours), and stenosis at cervical and lumbar spine. 7 vertebral fractures at thoracic and lumbar levels. Unlike you I have low blood pressure.

My daughter has lupus and the rheunatologist sent her to cardiology with a new heart murmur and told her that autoimmune disorders can affect the heart. I myself have never heard this.

What level of spine was your surgery? I can tell you that I believe the alteration in my spinal structure and consequent crowding of my innards seems to be a more likely contributor to my afib than lupus, but who knows.

I do not have congestive heart failure despite 10 years of afib/tachycardia episodes. I am wondering how your congestive heart failure began.

Can you get that heart rate down without the ablation? Is there another medication to try, or a stronger dose? If not, I hope you find the best EP to do the ablation that you can find. The afibers forum might be helpful: https://www.afibbers.org/forum/index.php

Sorry I can't help more!

Jump to this post

Thank you so much for replying. My heart rate has never approached the 190 mark,thank goodness! But once it did rise it hasn't come down to below 120-25 range. The cardio has changed the meds a few times with no acceptable results so the ablation has been recommended as the next step. My PCP and Rheumatologist (the 2 doctors that I still have any confidence in) both agree that this is my best option now. I've found dozens of papers and studies in PubMed and credible research sites that report good results for "most patients" but, these who are usually subtracted from that group are those of us with these oddball conditions.

I think you are probably right about your spine issues contributing to other problems including the Afib. My spinal issues actually started in 2014 when I developed severe inflammation in my lumbar spine area. Totally out of the blue. Got a huge injection of steroids and others and it went away, for 4years!. In Jan 2018 I awoke one day with no feeling in my left leg and foot, right foot and right hand.No pain,no tingling etc - just total numbness. The highly recommended neuro took one look at me and concluded - female, fat and over 50 - Diabetic of course!! Of course not. Anyway he dX'd small fiber sensory neuropathy and told me to take alpha lipoic acid and order 2 Old Goats cream off the internet. Three months later I DID have a lot of pain when my third & fourth vertebra collapsed onto the fifth. So First surgery to rebuild the bottom of the spine - 24 months before I could sit in a kitchen chair long enough to eat a bowl of cereal. In 2021 developed pain in the back of my neck getting worse and, guess what?, problem in the cervical spine. Another surgery not as bad but no picnic either. So finally this last one was in Aug2023 followed by rehab and several rounds of PT and still slow recovery. Then THIS - seems like I spend my life waiting for the next shoe to drop.
I must admit that the whole "heart" problem has always been a worry, On my Dad's side ALL of my first and second degree relatives have died of heart attacks or other heart disease before they were 70 - (I'm 78) that includes my Dad and 2 half brothers as well as aunts/uncles and cousins. So probably some degree of risk there also. But, always got a clean bill from cardio.

I am sorry to hear about your daughter also having lupus. My Mom had RA and Crohn's & I truly think there are genetic links to these conditions. Thanks for the link to the afibsite. I've been reading Mayo Clinic general news for a while but never branched out to sites. Thanks!

REPLY
1 reply
windyshores | @windyshores | Sep 5 5:46pm
In reply to @patvo "Thank you so much for replying. My heart rate has never approached the 190 mark,thank goodness!..." + (show)
@patvo

Thank you so much for replying. My heart rate has never approached the 190 mark,thank goodness! But once it did rise it hasn't come down to below 120-25 range. The cardio has changed the meds a few times with no acceptable results so the ablation has been recommended as the next step. My PCP and Rheumatologist (the 2 doctors that I still have any confidence in) both agree that this is my best option now. I've found dozens of papers and studies in PubMed and credible research sites that report good results for "most patients" but, these who are usually subtracted from that group are those of us with these oddball conditions.

I think you are probably right about your spine issues contributing to other problems including the Afib. My spinal issues actually started in 2014 when I developed severe inflammation in my lumbar spine area. Totally out of the blue. Got a huge injection of steroids and others and it went away, for 4years!. In Jan 2018 I awoke one day with no feeling in my left leg and foot, right foot and right hand.No pain,no tingling etc - just total numbness. The highly recommended neuro took one look at me and concluded - female, fat and over 50 - Diabetic of course!! Of course not. Anyway he dX'd small fiber sensory neuropathy and told me to take alpha lipoic acid and order 2 Old Goats cream off the internet. Three months later I DID have a lot of pain when my third & fourth vertebra collapsed onto the fifth. So First surgery to rebuild the bottom of the spine - 24 months before I could sit in a kitchen chair long enough to eat a bowl of cereal. In 2021 developed pain in the back of my neck getting worse and, guess what?, problem in the cervical spine. Another surgery not as bad but no picnic either. So finally this last one was in Aug2023 followed by rehab and several rounds of PT and still slow recovery. Then THIS - seems like I spend my life waiting for the next shoe to drop.
I must admit that the whole "heart" problem has always been a worry, On my Dad's side ALL of my first and second degree relatives have died of heart attacks or other heart disease before they were 70 - (I'm 78) that includes my Dad and 2 half brothers as well as aunts/uncles and cousins. So probably some degree of risk there also. But, always got a clean bill from cardio.

I am sorry to hear about your daughter also having lupus. My Mom had RA and Crohn's & I truly think there are genetic links to these conditions. Thanks for the link to the afibsite. I've been reading Mayo Clinic general news for a while but never branched out to sites. Thanks!

Jump to this post

You have really been through it @patvo!

REPLY
leannestork | @leannestork | Sep 22 5:13am
In reply to @windyshores "I have lupus and very high anti-centromere indicating possible limited systemic scleroderma like you, as well..." + (show)
@windyshores

I have lupus and very high anti-centromere indicating possible limited systemic scleroderma like you, as well as afib with heart rate up to 190 (but once or twice/year for a few hours), and stenosis at cervical and lumbar spine. 7 vertebral fractures at thoracic and lumbar levels. Unlike you I have low blood pressure.

My daughter has lupus and the rheunatologist sent her to cardiology with a new heart murmur and told her that autoimmune disorders can affect the heart. I myself have never heard this.

What level of spine was your surgery? I can tell you that I believe the alteration in my spinal structure and consequent crowding of my innards seems to be a more likely contributor to my afib than lupus, but who knows.

I do not have congestive heart failure despite 10 years of afib/tachycardia episodes. I am wondering how your congestive heart failure began.

Can you get that heart rate down without the ablation? Is there another medication to try, or a stronger dose? If not, I hope you find the best EP to do the ablation that you can find. The afibers forum might be helpful: https://www.afibbers.org/forum/index.php

Sorry I can't help more!

Jump to this post

I have lupus …. I also have 27,000 ectopic heart thuds a day so every fourth beat.
Cordilox180
Then added flecinade 50
They are still there but at least I can sleep. I have done a lot of research and most people get the best result after their second ablation… so I am now off for my second one as this time he knows which side of the heart the electric problem is coming from. It’s 50/50 chance that it will help me not feel so depleted because if it is lupus draining my energy then that’s going to be upsetting.
Looking for a new Rhuematolgist that is up with the new medication… hope that helps

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