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Re: heart electric system [Re: worldofme] #280345
05/12/18 04:53 PM
05/12/18 04:53 PM
Joined: Nov 2016
Posts: 58
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ThreeG Offline
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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
Joined: Jun 2014
Posts: 59
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
Joined: Aug 2017
Posts: 51
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
Joined: Aug 2015
Posts: 522
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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
Joined: Aug 2017
Posts: 51
NY, USA
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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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