Anagrelide

[Janis12]

Hello all you good people, just a question about Anagrelide. How many people on this forum are taking it currently or have tried it in the past ? I have ET and on hydroxycarbomide, my platelets have been creeping up so my hydroxy has been increased which has helped but I am not happy with the side effects. There is talk of trying something else and it seems it is pretty much up to me to make a decision (worrying). Interferon appeared quite attractive for various reasons but Anagrelide also seems to tick a few boxes mainly from the point of view it only reduces the platelets. Now I am no expert but I was thinking if the white cells are left alone then surely our immune system would remain in better shape and with the red cells also left out then no possibility of treatment causing anaemia. I have an appointment in a months time so I want to go in with a positive approach and a good idea of which direction to take as far as the meds are concerned. Another thing I was wondering, how does a haematologist become an MPN specialist, I know many of them have an interest in this area but are not classed as specialists...just trying to educate myself along the way! Many thanks to you all for reading this post.

[Ratton]

HiHave been taking anagrelide

Over 3 yrs,seem good for me.

[heathermc]

Initially on hu but after a year they put me on anagralide Initially 2 a day then 4 ..then 6 and back down to 4. I also take one hu a day

Platelets dropped from 1000 to 350 mark and remain there constantly

It was a game changer for me . Can cause headaches so I spread the dose out in the day

Can cause palpitations so make sure you get your heart checked . Drink plenty of fluids

I'm checked every three months now and have been on them 3 years .

Hope that helps

[Janis12 in reply to heathermc]

That all sounds like a good response to me. The side effects of anagralide seem to be much less than hydroxycarbamide, and from what I have been told the palpitations are not dangerous. Thanks for your response and I hope your medication success continues.

[lizzziep]

I’ve been on Anagrelide for a few years, no problems. When I first went on it I got a few palpitations but they faded. It’s kept my platelets down. The dose was reduced and they crept up a bit. Other counts ok except I’m anaemic but that’s not necessarily due to the Anagrelide.

[Janis12 in reply to lizzziep]

That sounds like a fairly successful outcome without to much trouble on the way. Many thanks.

[gset]

anagrelide has been successful for me but I was poorly on inteferon and HU

[Janis12 in reply to gset]

It certainly is a condition that requires a very tailored approach to the individual, I want to collect as much information as possible before I make my decision. Thank you for your response.

[Buggerbear]

Took anagrelide for over a year and it never dropped my platelets so I finally got off of it. Taking Jakafi (ruxolitinib) now but platelets still 600 plus.

Good luck and hope it works for you!

[Janis12 in reply to Buggerbear]

Interesting. I know some people take hydroxy at the same time as anagrelide to get a positive result so that's two drugs, I hope to avoid that. Best wishes.

[Buggerbear in reply to Janis12]

Yes I first took hydroxy (less than a year) with the anagrelide and only my Red Blood Cells came down. I was also getting plebotomies regularly too. I could not tolerate the hydroxy. I started Jakafi and continued taking the anagrelide. I started having really fast irregular heart beats so my Dr. finally took me off the anagrelide. I only take the Jakafi and aspirin now for PV and ET.

[TeddyRuxspin]

Hi Janis

I started on hydroxy but it made me itch like crazy and I piled on a load of weight. I switched to Anegrelide which worked for a while and then my platelets went through the roof. I was pretty upset to hear it was no longer working as I had no side effects. I was put on interferon which did not agree with me at all. I started having panic attacks, lost all my confidence and had a complete breakdown. Luckily I have a consultant who thinks outside the box and she put me back on the Anegrelide but on a different dose. Thankfully it worked and my platelets sit between 300-400 nowadays. It blips when I’m Ill or have an infection but the platelets always go back down to a safe range within a month of me being well. I have 3 monthly consultations and apart from some fatigue I have no side effects. I hope this helps with your decision

[Janis12 in reply to TeddyRuxspin]

Your journey gives me some comfort and hope that a change in meds is not the end of the world, if I was honest the whole thing really frightens me. I really just want to get on with life without this worry and I guess as time goes on there will be many more worries involving this disease. Then I remind myself that our disease is manageable, unlike many others so in some way we ae lucky. Thanks for sharing your storey.

[TeddyRuxspin in reply to Janis12]

Please do let us know how your meeting with the consultant goes. Hopefully you will have a good caring team who will listen to you and answer all your questions fully so that you can make an educated decision.

[Mirror368 in reply to TeddyRuxspin]

May I ask what dosage of Anagrelide finally worked for you? My hematologist recently mentioned this as a possible alternative, However, I have Paroxysmal AFib so I am hesitant.

Thanks, Eileen

[Gaithersburg]

I have been on Anagrelide 3 per day, 2 in the morning and 1 night since 2010 (13) years and it controls my platelets well as they were around 1,500 beforehand. I recently had a bone marrow biopsy and, as everything is going well, I was advised to stay as I am. Good luck with your journey.

[Janis12 in reply to Gaithersburg]

Bish bash bosh!! That sounds good to me, simple, no problems, carry on taking the tablets. Thanks for sharing, your storey has given me a boost and will help me make my decision.

[GK40]

Yes am on it....was on anagrelide for 14 years, then was out onto HU...hated it with many many side effects...now back on anagrelide..have been for a year abd much better off..platelets controlled and no side effects ! And plus my hair is growing back!! Your body, your choice!

[Janis12 in reply to GK40]

I like the sound of hair growing back (my biggest gripe). May I ask why you came off anagrelide after 14 years, did you ever get offered interferon? It seems that in the arsenal of drugs available to treat our condition anagrelide appears to be the one with fewer side effects. Thanks for your response and enjoy your new head of hair .

[MichaelS]

Hello Janis12, I had PV and on hydroxyurea/carbamide but my platelets went up to 880 and I had Analgrelide added to my medication. It reduced my platelets but creatinine went up to 159 very quickly so I had to stop the Analgrelide. All this happened in the 1990s. I had to be seen by the kidney department because I became Chronic kidney disease stage (CKD3b). My creatinine has reduced to 139 just recently, and I think the upper limit for it is 110.Remember that everyone is different and what happens to me doesn't mean it happens to you. I wish you a controlled history with your blood and life 😊

[Janis12 in reply to MichaelS]

Sorry to learn that you had such a bad experience with Anagrelide, as you say we are all different but the more I learn about the experience of others the more I believe this resembles a game of Russian roulette. Thanks for your response and best wishes.

[ts75]

ET, ana for 2 years. Felt bad for a week or so (heart, headache), now don’t notice anything and all my blood is normal. One pill morning, one before bed. If it wasn’t because long-term might be better with Peg, I’d stay on ana! Had high white blood count before but also normal now w ana!

[Janis12 in reply to ts75]

Hmm, long term is one of my considerations re Anagralide. It is a difficult choice, all the meds have their own pros and cons I am beginning to wonder if tossing a coin would be easier. Thanks for your response.

[stillkicking]

Hi Janis,

I have been on Anagrelide for about 2.5 years now and take 2 in the morning and 2 at night. I started at about half that dose and built up to what I take now over a period of about 3 months whilst tapering off the hydroxyurea that I had been on for a couple of years prior to changing to Anagrelide. I did experience episodes of palpitations for the first few weeks whilst adjusting to Anagrelide, usually they would come on about half an hour after taking the medication and make me feel a bit odd for a few minutes, then settle down again. Once my body was used to Anagrelide I had no further trouble with the heart.

I have done much better on Anagrelide than I did on hydroxyurea, so I am very thankful for it. Of course these things work differently for each person, so it is important to try with an open mind and see what drug suits you best. I do know that some people do very well on hydroxyurea, and so I would not want to influence you against that, but I am happy to report that Anagrelide can work very well for some of us.

[Janis12 in reply to stillkicking]

Hi, many thanks for sharing your experience. It appears you had a smooth transition from hydroxy to anagralide, the palpitations seem a minor inconvenience. My main issue with the hydroxy is the hair loss, I am finding it very upsetting. I also suffer from acid reflux which I didn't have pre hydroxy so I am now taking meds for that. I think some of the side effects creep up on you and before you know it you feel 'not quite right' but cannot put your finger on anything in particular. I asked about anagralide when I was first diagnosed with ET but my haematologist was reluctant to do this because if the side effects but after three years on hydroxy and now better informed, it seems it is the hydroxy that is the 'bad boy'. Exciting times ahead! I hope you continue to do well on your medication.