How to cope with palpitations from Anagrelide.

[Mufftreacs]

What is the best way of coping with palpitations caused by Anagrelide?

[fee13]

You should see your specialist as anagrelide can cause heart problems, you may need to change treatment plan.

[Mufftreacs in reply to fee13]

Thanks for your reply. I have seen my specialist and have had to come off HU because I have a leg ulcer after 13 years. She has put me on Anagrelide for a few months to try and heal the ulcer. I have had an ECG and other tests prior to starting this new treatment . I think she is hoping to put me on to Peg in a few months time.

Just wondered what the best methods of coping with palpitations are?

[fee13 in reply to Mufftreacs]

I'm afraid I can't help you there because I don't know the mechanism of how anagrelide effects the heart. It can help with relaxing breathing exercises generally.

[Wyebird]

Hi, I take 10 anagrelide a week plus hydroxi. I was on 14 anagrelide but it made me extremely light headed.

I don’t know if my method will help as it depends on your dose.

I take 1 at night just before I sleep. Then I spread out through the week at night the other 3. Three nights in a row my body cant cope with. I also noticed that slowly increasing my dose helped.

Maybe a mixture of hydroxi and anagrelide could be a first step then decrease hydroxi and increase anagrelide.

How many anagrelide tablets are you on a week?

[Mufftreacs in reply to Wyebird]

Thank you for your reply. I am on 14 per week at the moment but have had to stop HU completely due to the leg ulcer.

Only just started on Anagrelide so do not know what to expect.

[Wyebird in reply to Mufftreacs]

Hi something else you could do and I did this to stop the palpitations.

Take one as soon as you go to bed then when and if you go to the toilet in the night take a second. I was told to take 4 hours at least apart. That way Palpitations were minimal for me but lightheadedness wasn’t.

Keep me informed.

[Mufftreacs in reply to Wyebird]

Thanks for the advice. I think we were not offered Peg as we are over 60,

My consultant is going to try me on Peg once my platelets are down and my other blood counts have come up a little. Will keep you informed,

[Wyebird in reply to Mufftreacs]

It’s worrying when one med is not working isn’t it.

[Ladygolf]

After 12 years on Hyrdrea my platelets started rising while othercounts especially neutrophils were falling. After a BMB which showed no progression my hematologist switched me to 28 Anagrelide a week. After two months he increased to 42 per week. My heart was jumping out of my chest along with a list of other side effects. When I saw my hematologist he said the palpitations and greatly increased blood pressure wouldn’t hurt me but I asked him to switch me to something else. he said there was nothing else and started talking stem cell transplant. This totally freaked me out and we ended up going back to 28 per week. I wore a holter monitor which showed abnormal heart rhythm and skipped beats but Dr. says nothing to worry about. I am worried but seem to have no choice but to continue. I take 2 just before bed and 2 with breakfast. It’s been 8 months and my body seems to be adjusting. I don’t notice the palpitations at night when sleeping and in the morning they start about 2 hours after I take it. I try not to do anything strenuous in the mornings and I do deep breathing when they start and try to concentrate on other things and now some days hardly notice the palpitations. If you have to be on Anagrelide I suggest you persevere and I think the palpitations will lessen in severity over time. They are very frightening and hopefully your doctor can switch you to Peg soon.

[Mufftreacs in reply to Ladygolf]

Good grief! Those sound massive doses. No wonder you had side effects .

Thank you for your advice and encouragement though. Much appreciate any tips as starting a new med after 13 years is quite daunting.

[Wyebird in reply to Ladygolf]

You are inspirational. I too was given the choice. Increase hydroxi or go back on an increased dose of anagrelide. Oh don’t understand why interferon wasn’t offered to either of us though.

[lizzziep]

I seem to notice the palpitations at night more, usually when in bed. I try to do deep breathing and holding my breath a between breaths. I mentioned this to my specialist nurse but she said the level of palpitations I was getting should be ok! I was on hydroxy previously but got ulcers after 3 years. Been on Anagrelide nearly 3 years now.

[Mufftreacs in reply to lizzziep]

I have had to stop HU completely and suddenly so I think it is a bit of a shock for my body.Will have blood tests fortnightly to check platelets.

Thanks for your advice. Much appreciated.

[StreetPastor]

Hi there,

I've been on anagrelide 19 capsules a week for eight years.

Once your platelets are under control I would say that learning to relax helped me. If you have had checks and all seems OK I know that I get very stressed and anxious which I'm sure doesn't help with pain and heart rate etc............It's difficult as we are all different. Oh I cough on the odd occasion I get them now, sounds silly but helps me x

[goldenvision in reply to StreetPastor]

I find coughing helps too

[Wyebird in reply to StreetPastor]

I’m concerned that as we get older ( I’m 63) my body won’t be able to tolerate the palpitations. Has anyone any knowledge of this?

[Mufftreacs]

Such a comfort to know you have been on them for 8 years . You have done well!

I do agree stress is s great problem when you have an MPN. I shall try to switch off but like you, find it hard.

I know what you mean about coughing. I have actually had palpitations before when they gave me a generic version of HU. I too, found coughing help.

Thanks for your help,