Palpitations

[linphy]

Hi everyone i have been on Anagrelide and Asiprin for 8 weeks, but the last week I have had awful palpitations and a racing heart. Does anyone else experience this.

Happy Easter

Lin

[Dianne-Guisborough]

Hi Lin

I too am on anagrelide ( like you I have recently started it - approx 6 weeks ago) . I was told when it was first prescribed that if I had any episodes of breathlessness or palpitations that I was to let my haematologist know, so I think it is best if you let your haematologist know - definitely worth phoning your Haematology Unit .

Hope you get some help and advice from those looking after you .

Dianne

x

[bruddery]

Hi Lin, I was put on Anagralide about 2 years ago, after hydroxyurea stopped working. I too had severe palpitations, whooshing sounds in the ears and I could constantly hear my heartbeat whilst on Anagralide. I stuck with it for about 3 months. When I said to my haematologist what was happening, I was taken off it immediately, my file was marked severe reaction to Anagtralide. I was then given Ruxilitinib. It took me several months to get rid of palpitations and the sounds in my ears. All good now though. I would most definitely get in touch with haematologist ASAP. Good luck with it all. Janice

[Hidden]

Hi Lin

I have been on Anagrelide and aspirin since 2008, it has controlled my platelets well for all that time, the palpitations were difficult at first to deal with but as they were only just after taking Meds I learned to live with it, heart scans showed no signs of anything untoward but I became more concerned about the affect on my body.

I am now making the change to Pegasys, still taking low dose Anagrelide until platelets are controlled by Pegasys hopefully.

Side affects from Pegasys different but still difficult.

As others have said speak with your consultant, it is sometimes hard to weigh up what is for the best but they should be able to explain what is happening, a big part of this is if you can cope with the effects of the medications.

Good luck and hope things improve for you

Lynn

[Lab-Rat in reply to Hidden]

Hi Lindiloulou

Please could you tell me the side effects you are experiencing with pegasys? I am about to start interferon and am dreading it. We do not have pegasys in South Africa so I will be injecting every 3d day. I have a demanding full time career and am anxious that I may feel unwell from the regular injections. Kind regards

[Hidden in reply to Lab-Rat]

Hi there, the Pegasys is not as bad as I expected and if what I read is correct the affects can get better with time, here's hoping.

I have had headaches, general flu like aches and pains, a general vagueness and foggy head. I don't think I feel as bad now as I did initially.

I do feel everyone is different and as far as I know some people are fine with interferon others are not, my thoughts on this are that at this point I feel it's a better option in the longer term if I can cope with it.

I dose up with paracetamol an hour before injection and drink plenty of water which seems to help.

It's certainly worth a try to see how you get on, stay positive, hope it goes well.

I struggled with the first injection, I could not bring myself to inject it, purely because I was afraid of the side affects but now it's second nature just 3 months on.

Take care.

[Lab-Rat in reply to Hidden]

Thank you so much for your helpful reply Lindy! Best wishes.

[Lab-Rat in reply to Hidden]

Sorry to bother again, if you do not mind me asking: what is your injection frequency?

[Hidden in reply to Lab-Rat]

At present I take 180 dose once weekly. Yvette everyone is different, you may or may not have any side affects at all, it won't be until you try that you will know.

Put yourself before work Yvettte, talk to your consultant about your fears and do what you and they feel is best for your health in the long term, I am no expert just have my own experience to go on along with advice given on this site.

I have listened to others on this site but trust that my consultant will advise me if I am thinking along the wrong lines

Your employer should also make reasonable adjustments for your condition.

Perhaps Maz could get some advice from the professionals for you also.

[Lab-Rat in reply to Hidden]

Thank you so much!

[Hidden in reply to Lab-Rat]

Take care

[linphy in reply to Hidden]

Hi Lynn

Thank you, I did contact helpline yesterday morning. I was experiencing awful palpitations and full of a cold. Helpline was very helpful, i had an ecg which was fine and a blood test, haven't got the results for blood test, I'm seeing consultant Monday.

Lin

[Hidden in reply to linphy]

Glad to hear your getting help Lin, but sorry to hear your having issues with palpitations, take care. Hope it goes well with your consultant.

Lynn

[Norman45]

I was diagnosed with ET six years ago and started on hydroxy but had to come off it after 18 months because I felt so unwell. I then went on to Anagralide which still left me feeling off colour most days. Palpitations were one of the worst side affects especially in the middle of the night.

I would wake up with my heart racing and it would take several minutes to slow it down and get comfortable enough to sleep again. It was not a very nice experience and you have my sympathy.

Last year, after a BMB, I was diagnosed with post-ET MF and started on Ruxolitnib which took away most of the bad side affects apart from fatigue and breathlessness.

Life is very much up and down; good days and bad days. Thank goodness for an understanding wife who has taken the strain when I've been badly down.

[linphy in reply to Norman45]

Thank you that's a great help. I was diagnosed with ET January this year. Started on hydroxy but within 5 weeks was taken off it, made me feel so ill. Anagrelide I had the odd palpitation at the beginning but now it's getting worse lasting longer. Meant to be seeing my consultant in 2 weeks, but as you say think I should contact him sooner. My husband has been brilliant making sure I'm ok

[lizzziep]

I was changed from hydroxy to Anagrelide about 7 months ago. I got a lot of palpitations at first, but they faded a lot, now I know to expect a few about 2 hours after taking them. The haematologist knows and says to let them know if they got worse.

[lynnieb]

Hi there,

I just take aspirin at the moment, for ET Jak -ve. I'm 46, female, and over the last year, my palpitations have got much worse, with runs of ectopic beats that drive me mad. Sometimes, they keep me awake, and take my breath away. So, I don't know if it is the Anagrelide that you are taking, or just another, (YET another!!) symptom of this frustrating condition. Ask for a 24 hour ECG. That will show precisely what is happening.