anagrelide

[kp27kathleen]

Just starting low dose of this drug today after 3 yrs of HU. Reading the side effects has me terrified. Wonder if anyone older that 60 has ever had heart problems while on Anagrelide. It sounds like a terrible drug but HU was causing so many side effects. Platelets have been normal for 2 yrs. Thanks a lot

[Marketa]

i have taken anagrelide for more than 2 years, my heart is ok, the worst side effect is diarrhoea every day, it means last two years, which is very uncomfortable. i am 44.

[kp27kathleen in reply to Marketa]

Oh dear that's not so good either

[scousesbird]

My husband has been advised to go on it too along with interferon because he didn't get on with Hu either. He's got to let consultant know what he decides. He is of the same mind as you - side effects for both are awful. (He's 60). So I too would be interested to know what you have asked about so he can make his decision. At the moment he said he would have more venesections rather than take either because the side effects will make him too ill. X

[kp27kathleen in reply to scousesbird]

Unfortunately my heme is a person of few words. I think she really wanted me on HU. Just gave me the info sheets and told me to come back for blood work in Sept. She doesn't really like anagrelide but doesn't come up with a good reason. The dose is minimal 0.5 each day so I guess I'll give it whirl. The pharmacist said to keep a close eye on pulse rate and blood pressure.

[wendycu]

Hi, I’ve been taken angrelide for 9months now. I was fine taking one a day now I take 2 a day I have heart palpitations (not bad one but they are there)

The doctors are keeping me on 2 a day for now. No other side affects.

I was very scared at first but I remember I was like that when I started Hydroxy 12 years ago.

I said to my self, take the challenge of it doesn’t work At least I’ve tried.

I hope it goes well for you. Take care.

[kp27kathleen in reply to wendycu]

Very good way to look at things

[Arty16]

I did had a lot of side affects with HU. So was advised to move to Anagralide. Since being.on Anagralide no side affects great. Was warned when I started that I may have side affects but quite often they lessen after 6 weeks. But I was lucky and had none. Platelets normal .... aged 47

[kp27kathleen in reply to Arty16]

Oh boy I hope

[SuekJ]

Hi, I’m 58, I was put on Anagrelide 8 months ago after a year on Hu. I already had coronary heart disease and was very worried. My cardiologist was consulted and gave the go ahead. I have been fine with minimal palpitations until about a month ago, started getting 90-120 beats per minute at rest and really bad palpitations, my Angina symptoms are back now and I’m worried. Waiting to see cardiologist. I take 4 a day. Platelets hover around 400-470. And yes, diarrhoea isn’t much fun either! Please remember each person is affected differently and you may not suffer any side effects at all, I hope it goes well for you

[kp27kathleen in reply to SuekJ]

Thanks for answering

[tessa46]

I am 71 and have ET diagnosed after a minor

Stroke in 2015. I was very reluctant to go on any medication because I have a long history of problems with side effects. I have been on Anagrelide for 7 months, low dose 0.5mg daily, no side effects so far platelets ok. Previously on Pegasus interferon 45mcg for 15 moths and felt very well on it, platelets swiftly going down to normal. Unfortunately I developed a retinal occlusion, no proof it was definitely related to the interferon but I was taken off it as a precaution. Only suggestion I would offer is to make sure he starts on a low dose. We are all different, you don’t really know the impact until you try.

[kp27kathleen in reply to tessa46]

Thank you. 0.5 daily

[Belgobrit72]

I was on anagrelide when first diagnosed in my early 40s. Was fine for first 6 months although it didn’t really bring my platelets down. Then I started getting heart palpitations which completely freaked me out. Was put back on aspirin only for a year or so but as platelets were creeping up I had to start hydroxy. The thought of chemistry was quite scary but I have been fine with it and now platelets are under control. Guess we all have to find what suits us

[kp27kathleen in reply to Belgobrit72]

I'm glad for your success

[Lifam]

I have been on HU just over 2 months, no idea about Anagrelide. But one thing for sure is side effects of our medications are all terrified, it may not affect you, hope you'll be fine.

[Ladygolf]

I am 66 and took HU for 12 years until it lost effectiveness. I started Anagrelide 8 months ago. Started with 4 a day then a month later raised to 6 a day. I spent two months with headache, abdominal pain, diarrhea, and severe heart palpitations and elevated blood pressure. Finally told hematologist I couldn’t take it anymore and he reduced to 4 a day. Had less symptoms but he was unsympathetic and suggested I was still young enough for a SCT. I was shocked as I had felt pretty normal since diagnosis in 2006. I switched hematologists and new one said to keep taking Anagrelide and my body would adjust to Anagrelide. It has. No more headaches and palpitations are less severe but diarrhea continues. It has reduced my platelets well. It seems in Canada there is no other good option so I have to live with it.

Hope your husband does better on it than I because we all react differently. Good luck.

[Wyebird in reply to Ladygolf]

Why didn’t you a sct. I would have jumped at the chance?

[Ladygolf in reply to Wyebird]

Because I had just had a BMB and I am still true ET. My life has been relatively normal since diagnosis 2006. I asked hematologist what the long term (5 years +) survival rate was and he said about 50%. I would much rather put up with all the Anagrelide side effects than take those odds of dying in less than 5 years or not even live through the procedure. I am still pretty active, golfing 4 x a week. My new hematologist says we can try combination therapy if Anagrelide dose has to be raised and becomes intolerable. I would be willing to try interferon if he could get it for me. An SCT would be a last resort. Why would you jump at having one?

[Wyebird in reply to Ladygolf]

Because my life isn’t normal. At the moment I’ve lost at least 50% of my life. My energy has left me almost zombified. Althlough I have had good days. I used to teach PE. I retired when I was 57. I had 3 good retirement years. Swimming at least 3 times a week plus at least 3 exercise classes plus. a 4 mile power walk. At the moment I’m struggling to swim twice a week. I don’t do housework or the ironing. Mind you I didn’t realise that life expectancy statistics were so poor with SCT

Hope your quality of life continues.

[kp27kathleen in reply to Wyebird]

What is SCT?

[Ladygolf in reply to kp27kathleen]

Stem Cell Transplant

[prof_de_francais]

I was on anagrelide for a while and it did cause a big increase in my heart rate. Because of heart problems in the family, I was taken off it and put on hydrea. Just give it some time and see how it affects you. I am 64 and this is the age when my mom started having heart issues, so I did not even want to potentially go down that road. When on anagrelide, I just wrote down my heart rate periodically, but if you wear a fitness tracker or smart watch, then it is really easy to do that. Keep us posted on how it goes, and try not to worry until there is something concrete of concern.

Cindy

[kp27kathleen in reply to prof_de_francais]

Thanks Cindy My thoughts just keep twirling.

[Wyebird]

I was on hu for just over three years. Then anagrelide was added. 1st 1 a day - no good

2nd- 2 a day

After 3 weeks I had to go back to 1 day. I was very light headed.

Platelets needed me to increase with the hu or anagrelide.

I went to 10 a week plus my 17 hu.

Brilliant results. I e now dropped two hu a week possibility I can drop more. I have noticed I have to spread the extra 3 tablets a week out and not take them on consecutive nights. I’ve also noticed that I rarely get if any palpitations. I even think if need be I could increase it( hope not).

You don’t say what your dose is.

I’m 63 ET Calr

Gooduck

[kp27kathleen in reply to Wyebird]

They are just starting me on 0.5 daily

[Osteomyelio]

Yes, I had frightening heart palpitations but learned to live with them. Was placed on HU after 5 years of anagrelide, but I don’t like how I feel on HU. I will try HU for a few more months and if I don’t feel better I will see if I can go back to anagrelide. ( I have had advanced cardiovascular work ups that indicated my heart was fine while on anagrelide- the palpitations apparently were just a symptom in my case)

[lizzziep]

I'm 66 and have been on Anagrelide for over 3 years now. I was previously on Hydroxy but developed side effects so was changed over. I do get occasional palpitations, but nothing too scary. No other side effects, and my platelets are in normal levels. I am anaemic, but that's nothing new. I am on 4 capsules per day. I had checks on my heart beforehand and was told everything was ok. You get used to the odd palpitations, and don't notice them unless they happen at night when I am in bed. I expect everyone reacts differently to them.

Best wishes

Lizzie

[kp27kathleen in reply to lizzziep]

Thanks so much

[Otterfield]

I was on Anagrelide only for the first two years after diagnosis. I was on the PT1 trial which they stopped in 2003, and I was put on Hydroxycarbamide. Later I was put on a combination of both. With side effects, I found that if I spaced the tablets throughout the day it was fine. Just very occasional palpitations which went away quickly if I had a lie down. I have now just started Pegasys, but can honestly say that Anagrelide has been my "favourite" drug, if there can be such a thing.

[kp27kathleen in reply to Otterfield]

So happy to hear that.

[Osteomyelio in reply to Otterfield]

Why does anagrelide seem like your favorite?

[Otterfield in reply to Osteomyelio]

Because the side effects were much easier to live with than Hydroxycarbamide. I had bad headaches for a couple of weeks and then occasional palpitations. With HU on a high-ish dose, I had anaemia and mouth ulcers. Recently I have been on 2 HU and three Anagrelide a day and have still been anaemic. I am now being switched to Pegasys and hoping the initial side effects will ease.

[Anag]

Hi Kathleen,

I started with Anagrelid right off the bat. 1 in the morning then 1 at night. Then 2 in the morning and 2 at night. Had a bit of palpitations after an hour of taking them. Then I had to increase to 3 and 3. Strong palpitations and I couldn’t keep up with my breathing. I even spread them out as far as possible over the day. Was better but still quite uncomfortable. I reduced to 4 spread out over the day and I am ok. It does make me a tad tired, but so can deal with that.

I cannot take HU because I have inborn anaemia or Interferon because Inhave Hashimoto. When I was exercising last year (and super happy) I was only on 3/day and felt great. In the fall I tried a detox that didn’t work, my intestines freaked out and my thrombos went up and I’m back on 4. I’m starting light exercise again.

Another side effect is a bit of difficulty sleeping and some brain fog.

[kp27kathleen in reply to Anag]

Thanks so much.

[Anag in reply to kp27kathleen]

I tried to be as clear as possible and I hope to have helped you in any way I can. All the best with your treatment! Anag

[kp27kathleen in reply to Anag]

Thanks

[Mufftreacs]

I am 78 and just started on Anagrelide. Had to come off HU after 13 years with a leg ulcer. I too, was very nervous but had several tests on my heart before starting.

I started off a two a day but have had to increase it to 4 as my platelets shot up to 1100!

I do get a few palpitations but the soon go.

I do have diarrhoea though, but it is manageable.

Good lock and hope this helps.

Kate

[kp27kathleen in reply to Mufftreacs]

Thanks Kate. I made an appointment with cardiologist to get his approval.