Afib

[Cookiebaker]

Have others with ET had AFib? I haven’t noticed any posts about it. I am now taking Eliquis and 75 mg of Metropolol. I am waiting to see an electrophysiologist to have an ablation. Can’t wait as AFib is no fun and the drugs for it on top of Hydroxyurea make me feel like a zombie!! As always thank you for being here.

[Andrew8]

Anagrelide and Hydroxycarbamide

I was diagnosed with ET in April 2016, and put on Hydroxy, but suffered extreme fatigue in December 2106, changed to Anagrelide, but fatigue continued until April 2017, when I was diagnosed with Atrial Fibrilation, after cardio hospital treatment and medication was re-diagnosed with MF, and changed to Jakavi. After two cardioversions my AF is now stable, with reduced medication. Developed shingles in August 2017, and some rash is still present but manageable with Aloevera gel. Platelet level stable at about 500, and spleen is only slightly enlarged. Still keep active, 70 , cardio rehab weekly, swimming , walking, etc, but some days just have to be a lazy one. Tend to do too much on the good days, but grateful for all the wonderful treatment at Aberystwyth hospital.

Update 8 August 2021. I am reasonably sure that my cardio problems are due to a side effect of Hydroxycarbamide ( which is well documented ) In 2019 I was experiencing general fatigue, and it was suspected that the cardio medication to control my heart rhythm, may have been responsible, so the dose was reduced, but this did not help, and in December 2019, I went back into AF, and despite treatment for Thyroid, I showed no improvement, and was not offered another cardioversion. Earlier this year with no apparent way forward my wife kept looking for ideas from Dr Google, and came up with possible magnesium deficiency. So I tried taking magnesium tablets, and the background fatigue has largely improved, but I am still left with the fatigue and breathlessness when doing anything more than light general exertion, which is usual with AF. However I have now been offered another cardioversion which if it works may improve my capacity further. Jakavi seems to control the platelet levels well, and all the other blood factors seem to remain stable, but again the symptoms of shingles is a listed side effect, and of course Jakavi is a very expensive medication ( £2k per month I was told ) .

Further update 20 August – had cardioversion on 11 August, which worked, now less breathless and generally feeling less tired, but need to gradually increase my exercise to improve fitness. Just hope the better rhythm lasts. Due to see cardiologist next Friday, so hope the ECG will be OK.

[Cookiebaker in reply to Andrew8]

Oh my goodness…. You have had a struggle with AFib, shingles and MF. I hope you have a good report on your next cardiology visit. Thank you for your experience.

[hunter5582]

I did have paroxysmal Atrial tachycardia with PV. At the time I was taking hydroxyurea and diltiazem. That was a VERY bad combination in terms of additive adverse GI effects. I opted for the catheter ablation to treat the tachycardia. The surgery was successful. I was conscious for most of it and was able to watch the surgery on the monitor while the ablations were occurring in my heart. They had to put me under for the last part so I missed that part.

Th main thing of note is that I did have some reactive thrombocytosis following the surgery, which is normal. It is something to anticipate but not to worry about it. the platelets will go back down as the heart heals from the procedure.

Do please let us know how it goes.

[Kari1961]

Not AFib with me, but I did/do have Supraventricular Tachycardia with PV. It's controlled with medication. They tried me on a few - beta blockers and digoxin and they either didn't work or the side effects of taking them were horrendous. I now take Verapamil x 2 daily - and I've not had a significant episode of SVT for many years, I also tolerate the Verapamil well.

I hope the ablation improves things for you.

[Juliet46]

Hello, I was diagnosed with A Fib in May. My cardio is still trying to find out the cause. Since April I have been on 1000mgs of hydroxycarbamide per day so now I’m wondering if the increase in hydroxycarbamide is the cause of the AF. I have pointed out to the cardio that I take hydroxycarbamide but no one has linked the two.

[IrishHiker]

Not A Fib but Atrial Tachycardia. They originally thought it was A fib. Went through the gauntlet of tests and afterwards they put me on Bisoprolol . If you feel too tired on your beta blocker speak with your doctor. They can either reduce the dose or switch to another drug till quality of life is improved. Good luck😊

[Cookiebaker in reply to IrishHiker]

Thank you everyone for your experience with cardio. I will stick it out on metropolol another two weeks until I see electrophysiologist . And then inquire if I can try something else until I can have the ablation. Have a great weekend.

[hunter5582 in reply to Cookiebaker]

I will note that while Diltiazem (calcium channel blocker) on top of HU made me very constipated, it did not cause the asthenia, dyspnea and other adverse effects that atenolol (beta blocker) did. There are other med options if you need them prior to the catheter ablation.

Please do let us know how things go.

[Cookiebaker in reply to hunter5582]

I will let everyone know how I get along. Thank you.

[Eadaoin]

I was diagnosed 23 years ago with ET. I had a pacemaker implanted for vasovagal syncope 10 years later then developed AF. Three years ago I had an AV Node Ablation. This is not a cure for AF but it means I don’t feel it quite as strongly as before and there is less discomfort. Hope this helps.

[Cookiebaker in reply to Eadaoin]

Thank you for sharing your experience. It is so enlightening to hear from others. .

[Cookiebaker in reply to Cookiebaker]

I saw the electrophysiologist and in addition to AFib I have symptomatic PAC’s. He said an ablation could help with AFib but wouldn’t effect the PAC’s. He said take Flecainide and that would help both conditions and it has. He also decreased the beta blocker metoprolol and that has helped. I wanted to ask others if they take both Eliquis and baby aspirin. I called my hemo and he said to ask the cardiologist if I should take both. He said just take Eliquis but I don’t know if he knows anything about ET. What are the rest of you doing? I am 72 . Thank you.