Behcets Heart -Rate Recovery impaired study reveals.

[fleagle]

Hi all I have been looking into something recently after I had a remission and recomenced excercising again, It concerns the ability for the heart to recover after exertion, this may not be soley for excercise gym bunny types - but also somebody who feels like doing some strenuous gardening etc . Anyway Knowledge is king as they say and forewarned is forearmed.

I started wearing my Heart rate monitor when training on the bike after I felt like I was going to collapse off the bike on a stretch of steep gradient I have ridden hundreds of times over the years in between bouts of Behcets.

I watched my heart rate rise to 194 bpm -I am 56 yrs old and my Max rate should be 177bpm whilst excercising, I noted that even after I stopped the bike and walked about , my recovery seemed slow and stayed in the red zone for a suspiciously long time.

I ended up sitting under a tree for 20minutes debating whether to ring my wife to come and pick me up- I felt like I wanted to curl up and go to sleep there on the spot which definatley isnt normal for me !!! and It rattled me a bit

I have since discovered that Behcets can prevent the heart rate from normal recovery after exertion- something everyone needs to be aware of.

I enclose an excerpt from a study carried out for perusal.

The full report is also available from ncbi.nlm.nih.gov/pmc/articl... 9

( I hope linking to relevant items is allowed)

READS :From January through July 2008, we examined at our outpatient clinic and prospectively enrolled 30 consecutive patients with Behçet's disease and 50 healthy control participants who were matched for age and sex. Basal electrocardiography, echocardiography, and treadmill exercise testing were performed in all patients and control participants. The heart-rate recovery index was calculated in the usual manner, by subtracting the 1st-minute (Rec1), 2nd-minute (Rec2), and 3rd-minute (Rec3) recovery heart rates from the maximal heart rate after exercise stress testing.

Patients with Behçet's disease exhibited significantly lower heart-rate recovery numbers, compared with healthy control participants: Rec1, 24.28 ± 8.2 vs 34.4 ± 7.6, P = 0.002; Rec2, 49.28 ± 11.2 vs 57.5 ± 7.0, P < 0.05; and Rec3, 56.2 ± 12.11 vs 67.4 ± 8.7, P = 0.014.

To our knowledge, this is the 1st study that shows an impaired heart-rate recovery index (indicative of reduced parasympathetic activity) among patients with Behçet's disease. Given the independent prognostic value of the heart-rate recovery index, our results may explain the increased occurrence of arrhythmias and sudden cardiac death in Behçet's patients. Therefore, this index may be clinically useful in the identification of high-risk patients.

I have never been advised about this and my consultant knows I try to excercise whenever I feel up to it in order to maintain my fitness as far as is possible.

If I had not found this article after seeking more info on any heart related effects of Behcets, I may well have cracked on regardless in my ignorance and ended up in serious trouble - or Dead

I had been experiencing a strange fluttering in my chest (arrhythmia) "abnormal heart beat" and discovered this report. thought I would post it in case anyone else is not aware of the implications.

Best Regards to all.

[Michja]

Fleagle that's a wonderful read.

My daughter Jaida has been though the BD cycle and at the moment she is the best in five years. This is due to Infliximab and a wonderful rheumatologist.

My 11 year old loves to run and yes I do get the "fuffy chest syndrome" when she plays any sport mainly because she hasn't been able too until now. Jaida has made it into the 100 and 200 meter Victorian running finals, after winning her races. I have no idea how she will go but we are thrilled for her. BUT one thing I have noticed the last 2 months as her body recovers from BD is that when she plays sport she can end up in a hole very quickly. As a mother and it drives Jaida crazy, I tell her to take it easy , baby steps for a stronged body. To get her muscles and joints ready for the inter school runs, Jaida only ran 2 x 100 meter three times at slow jogs. It's so hard to know what her body can and can't do. We have no help as no one really knows what to expect. But Jaida has mentioned her heart going fast and it feeling funny. The problem is Jaida has been living with BD since the age of 5 and has a massive pain threshold, every specalist has said so. This has lead to hospital visits due to her not thinking it as bad as what it is. The psychologists have helped.

I'm going to invest in a heart monitor for Jaida. Thank you so much.xx

[fleagle in reply to Michja]

Hi michja, glad the article held some interest for you, I know by reading posts on here that sadly most people are too compromised by Behcets to even think about any form of Excercise !

I think that the problem is for anyone who does venture into any form of exertion related activity, is that you never know if you are feeling 100% and have to push yourself to try and do anything in order to see whether you are OK to exert yourself !.

I find that I push myself and in the past I have either got away with it and felt much better for excercising - or been knocked flat by it and have been bewildered by how exhausted and wiped out I have become.

I have gone from riding 50 miles on a bike whilst in remision- to being so exhausted I have to lie on the bed and sleep for an hour after gently walking my dog for half an hour - whats all that about !!.

The biggest problem I find with Behcets is knowing how far to push yourself -I am ex military and my mindset conditioning has always lead me to push myself in any activity I undertake, My mantra has always been - "Its easy to think of 100 reasons why I should not excercise today" and the hardest thing for me is accepting that I am not really the man I used to be in terms of capability.

Anyway I think that a heart rate monitor is a must for anyone with behcets who wants to excercise.

I see that Jaida has a high pain threshold, which is something to be vigilant about as its easy to shrug off irritating gripes that would stop somebody with a low threshold.

I think the secret is "a little often" rather than all out bursts though how do you tell a young person that !

I hope that Jaida continues to enjoy excercise and that the introduction of a heartrate monitor gives you a better clearer picture of how Jaida's condition is .

Best Regards

[sian34]

Hi

I had some tests on a treadmill for breathing problems whilst still undiagnosed for Behcets (it did only take 25 years!!).

It took so long for my heart rate to return to pre exercise level that in the end the tester gave up. Just said it was not what should be happening. I find you get a lot of this - if you respond too much outside the expected parameters medics tend to dismiss it as ' not possible' or the machine must be wrong! Drives my usually mild husband crazy!

[RatLover]

I have mainly neuro-behcets, but I also have other organ involvement. I have a pacemaker and have had 4 cardiac ablations for arrhythmias. One of which was a type of SVT called Inappropriate Sinus Tachycardia which is a chronically elevated heart rate and an inappropriate heart rate response to exercise (and exercise recovery).

[fleagle]

I didnt realise how complex behcets is - and more worryingly -I dont think my present rheumatologist does either !! I need to get over to Liverpool and see the experts - but my GP seems a little reluctant to send me there - as if it will be treading on my present consultants toes.

I know my present consultant is overwhelmed with her workload after one of the other consultants left so appointments are hard to get .I had FIVE cancellation from june last year (my original appointment date ) ended up seeing her in october and thats no good to me as I had flare ups but nobody saw me to witness them or intervene..

mine is definatly triggered by stress too.(something I need to discuss urgently with a specialist)

[goodlife]

Hi fleagle....I too have been working really hard at my fitness between flares but I've had a rotten 3 weeks with the fast heartbeat and chest pain and breathlessness on exertion. I'm hoping to get to my COE this week as I've felt dreadful. Thanks for the great post but I'm wondering how you got on since your last comment.

[camie]

Thank you I didn't know this and have being pushing myself thinking I was just out of shape I find the bike hard but walking is worse because of joint pain I think I'll just have to be content at being a crock ha ha thanks again

[Jaxxi]

Thanks for the info, Fleagle. I have been reading about the anti inflammatory benefits of exercise and have recently joined a gym - mainly for hydrotherapy pool and yoga, but I do use the equipment for 15 minutes or so. Being quite unfit after 3 solid months of flare have decided to start out very gently doing a few intervals at around 130 bpm peaking occasionally to 150, three or four times a week. I am 56 and my Behçet's is milder than it was 10 years ago when I was getting lots of angina-like pain. Happy to report that these chest pains have improved over time and heart rate seems to be recovering OK but I will certainly be keeping a closer eye on it in future, especially if I am having an off day.

Currently there is a lot of hype around about HIT, where you exercise as hard and as fast as you can for 20 second intervals for a few minutes a week. It is quite popular with middle aged people as studies suggest that it balances out blood glucose and could be useful for pre diabetic conditions. Probably not to be recommended for people with Behçet's, though!!!

[fleagle]

Interesting to read other peoples experiences, thanks to all of you for contributing.

I am seeing my consultant again today after recently speaking to my GP about my latest flare up- every time I have a flare up it starts with slightly different symptoms, until the usual cardinal features appear later on.

I am having uncomfortable pains in my chest area ,and I am not exercising until I have spoken to my consultant- I dont think its my heart but not 100 percent sure.

I would be a fool not to mention it and an even bigger fool to exercise strenuously until I am sure.

I was woken in the night with this painful "digging " sensation in my chest and Its coming and going throughout the day - though interestingly it didnt get any worse walking the dog earlier. It may be some sort of inflammation in my dudeonal area - as I have had bad inflammation years. I hate coming on here and sounding like I am a dripping moaning sod so I will stop now and report on what my consultant says today.

Hopefully this spring like weather will make everyone feel better.

best regards to all of you.