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heart electric system #280289
05/07/18 01:41 AM
05/07/18 01:41 AM
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worldofme Offline OP
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anyone have this issue with spondy?

Re: heart electric system [Re: worldofme] #280296
05/07/18 04:47 PM
05/07/18 04:47 PM
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awesomeman Offline
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Count me in.....a bit of a av block. for some random reason got worse with humira which sucks


diagnosed at 32.
HLA B27 Positive
Currently on Simponi, Tramadol, and celebrex
Re: heart electric system [Re: worldofme] #280297
05/07/18 07:17 PM
05/07/18 07:17 PM
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worldofme Offline OP
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What did they do about the av block, what were your symptoms?

Re: heart electric system [Re: worldofme] #280304
05/08/18 04:52 PM
05/08/18 04:52 PM
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awesomeman Offline
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my heart rate would randomly drop into the low 40 bpm or lower WHILE being active. I ran every test possible and eventually just stopped the humira and the issues went away.


diagnosed at 32.
HLA B27 Positive
Currently on Simponi, Tramadol, and celebrex
Re: heart electric system [Re: worldofme] #280315
05/09/18 12:09 PM
05/09/18 12:09 PM
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Brody96 Offline
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I’m currently on a heart monitor now (I’m 22, and 130lbs) so that they can monitor the conduction disturbances I get from AS. I have random episodes where my resting heart rate jumps into the 140s-150s and stays that way for minutes to days. They ruled out every other possible cause including congenital. Have you had a monitor or ultrasound done? It let my rheumatologist and cardiologist pinpoint the extent of the inflammation impacting my heart as well as the role of not having my pain managed. Im suppose to start Humira next week so I’m scared to see if it’s going to make it worse. I’ll let you know if it does!


22yr old female. Ankylosing Spondylitis and Lupus.
5 hip surgeries and counting

Dog mom of 3 rescues laugh

Re: heart electric system [Re: worldofme] #280329
05/10/18 02:34 AM
05/10/18 02:34 AM
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worldofme Offline OP
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I'm the opposite, I get severe fast heart rate for no reason from sinus node.

40 bom? sign me up. I'll take that. With my beta blockers I'm in high 40s anyway with normal rythem.

Re: heart electric system [Re: worldofme] #280334
05/10/18 02:49 PM
05/10/18 02:49 PM
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awesomeman Offline
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40 bpm while your active and should have a heart rate of 140 plus really isn't pleasant. agreed, I'll take a resting heart rate of 40 all day long....


diagnosed at 32.
HLA B27 Positive
Currently on Simponi, Tramadol, and celebrex
Re: heart electric system [Re: worldofme] #280335
05/10/18 06:34 PM
05/10/18 06:34 PM
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Winston Offline
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Here's an article on AS patients and conduction abnormalities that I recently ran across: https://bmcmusculoskeletdisord.biomedcentral.com/articles/10.1186/1471-2474-14-237

It's the second article I've found recently that recommends routine ECG monitoring of all AS patients. These researchers found that there was no correlation between development of conduction abnormalities and the severity of AS symptoms. In other words, you can have relatively mild AS symptoms and still develop the cardiac abnormalities associated with AS. In fact, in some people, cardiac symptoms will be their first AS symptoms.

Re: heart electric system [Re: worldofme] #280341
05/11/18 02:20 PM
05/11/18 02:20 PM
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ThreeG Offline
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I was interested to see this post bumped back up as it was just what I came on to look for. I have WPW, usually marked by tachycardia, but over the last few weeks I have been having multiple spells a day of palpitations during which my heart rate is falling into the 40s (and I've seen it go as low as the high 30s). I've had episodes of bradycardia in the past, but never so frequent or with such symptoms. It is accompanied by a dry cough, which I have read can be a natural response of the body to reset the rate. I've been on Cosentyx since early March, but this didn't start until late April. Thankfully, I have may annual cardiology check-up next week. It is really freaking me out.

Re: heart electric system [Re: worldofme] #280342
05/12/18 12:11 AM
05/12/18 12:11 AM
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worldofme Offline OP
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did you wpw start after spondy, or did you always have it?

here is something interesting - assuming this disease impact the heart then how does it impact if you say get a pacemaker or abalation?

how about valve leakage? what if valaves are fixed? will the disease still go after artificial valves or device?

if your heart rate is 30 then you should get a pace maker it's not bad says my friend who has a friend is ep cardio.

Re: heart electric system [Re: worldofme] #280345
05/12/18 04:53 PM
05/12/18 04:53 PM
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ThreeG Offline
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Worldof me, that's a good question. Technically WPW is a physiological defect, so I don't think it can be acquired. That said, I had the first real symptoms of it after my first major bout of severe back pain (though I was diagnosed with WPW long before my spondy diagnosis, which came 20 years after that first incident). I also have MVP and some minor regurgitation. I'm not sure I'm convinced there is a direct connection in my case. If there is, I think I tend to suspect it comes from the meds more than the spondy, but, I am very curious about it all.

I chose not to have an ablation way back when because I had few symptoms and I don't do well with needles (funny thing to say when I now inject myself!). The tricky thing now is the health vulnerabilities coming from the biologics. I recently found out that Cosentyx has an extremely long half-life. I had been able to work around Remicade pretty easily to have a colonoscopy last year. However, when a gynecological surgery was recommended recently, my rheumatologist said I'd be risking my life if I didn't wait 12, and preferably 20 weeks after a dose of Consentyx for anything involving an incision. That was a wake up call. I decided to stay on the Cosentyx, so I had to table the surgery idea.It is adding to my stress if I do need a pacemaker or other intervention.

I will definitely update if I get any good information from my cardiologist visit. Alas, this doctor is fairly new to me and is not especially thoughtful or helpful. Last year he told me I didn't need the echo my last cardiologist said I was due for because the results would "only scare me!"

Re: heart electric system [Re: worldofme] #280346
05/12/18 06:43 PM
05/12/18 06:43 PM
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NJ, USA
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CBMom Offline
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ThreeG, this is not heart-related, but I have had several surgeries on Cosentyx plus other meds (Imuran, Arava). One was an open abdominal surgery. Then I had hip surgery. I have Crohn's so have had many colonoscopies - they are not concerned at all about those. I have done the same on anti-TNFs, including very high dose Remicade (20mg/kg - the regular dose is 5 mg/kg).

I have never had any surgical site infections. The only time I had prolonged healing issues was on Prednisone. I will never have surgery on Prednisone again but with biologics + a DMARD I have been fine.

The one caveat is that I'm 24 and my rheumatologist did say that younger people are able to handle much higher doses of biologics without problems and her recommendations do vary by age.

Re: heart electric system [Re: worldofme] #280363
05/14/18 01:03 PM
05/14/18 01:03 PM
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NY, USA
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kjb Offline
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I have a question, at the beginning of the flare that finally got me diagnosed, my blood pressure was High, and mine normally is low. I also was complaining of feeling like my heart was pounding, like I was working out hard even though I could be laying on the couch, or in bed. Long story short, my resting heart rate keeps going into the 140 and 150's while sleeping, or random times during the day, takes my breath away. I asked my PCP to do a 30 day monitor, Which shows this.
Now I get a letter from my insurance that its just sinus tachycardia and they wont cover the $5000 for the monitor, because someone a the Dr's office wrote that it was to monitor palpitations. UGH.
Anyway, I need to fight that out.I plan to let them know that I have AS, and a family history of valve replacements. But, what I don't understand is the sinus Tachycardia a sign of the inflammation getting to my heart? From what the Dr.'s keep telling me is that its normal and not to worry, but its hard not to when randomly I cant catch my breath because my heart is racing for no reason. Most of the dr.'s tell me AS has nothing to do with my heart????

Re: heart electric system [Re: worldofme] #280368
05/14/18 06:05 PM
05/14/18 06:05 PM
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worldofme Offline OP
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kjb - same boat here I have sinus tachy, never had it before and all of sudden I have it now.

I also have some valve that are leaking.

the reason you can't breath is your heart races making the heart pump blood fast can't keep up with henc shortness of breath.

what doc are saying is coming from sinus node so no worries. yes easy for them to say. it's not afib or anything such so you won't go into ventricular fib.

there worry about vfib.

as for medical bill is so stupid our medical system can will bankrupt anyone with chronic condition.

we go from doc to doc lab to lab yet it's our responsibility to check coverage

what kind of charges do they even come up? the price is so inflated that it doesn't make any sense.

how can any test cost 5k? I had s test done that lab wanted me to pay 11k.

wyd? where do they even come up with the price?

tachycardia has ruined my life. I'm always nervous.

Re: heart electric system [Re: worldofme] #280378
05/16/18 02:29 PM
05/16/18 02:29 PM
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kjb Offline
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Worldofme - It is crazy and yes always nervous, then mad at myself because being nervous makes it worse. The thing is it hits out of no where and then you cant help but feel nervous. I am constantly questioning, what if this is something and I ignore it, what if it isn't and I go to the ER again. Ugh. So far, I ignore it but sometimes it lasts hours. As far as the cost, $5k is ridiculous. I don't have that kind of money on top of all the copay's, scripts, etc. Sad world we live in when someone makes a good living and still cant afford to pay medical bills.

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