Haemo Update

[azaelea]

Hello all! I had my consultation with Haemo Dr. this morning after a four week interval. My platelets have increased since last month's visit when they had pleasingly and unexpectedly gone down from 600 to 450, which was acceptable. They are now in the 500's . This is while I have stopped Hydroxy because of side effects. I have been off this since 9th January and feel much more like myself again apart from aches and pains from my ongoing Polymyalgia Rheumatica which I can deal with. I am taking my daily Aspirin. However, Haemo advises that I SHOULD be on platelet reducing medication , suggesting Anagrelide . I've been left for another four weeks to settle down further after which she wants me to start on small dose Anagrelide . I am very wary of this as I know many of you have reported having palpitations and heart issues when taking it. I would welcome your thoughts and feed back on this medication. Thanks and good wishes, Fran

[Applesnpears]

Platelet counts can vary over time (infections,level of hydration etc) and the analytical techniques are not always as consistent as you might hope. Platelets have a habit of sticking together, making it hard to get an accurate and consistent result.

Results might be 10% greater or smaller than the " true" value so if the true value is 500 the reported result might be between 450 and 550.

Your doctor probably wants to get your platelets down

and is probably suggesting anagrelide as you might find it has fewer side effects than hydroy. Its hard to know how anyone might react to a particular medication and you could always switch back to hydroxy. Talk to your doctor about having a plan - for example try the anagrelide for a few months and see how it goes. I assume the doctor has already assessed your heart ( ECG etc) to check there are no underlying issues.

[azaelea in reply to Applesnpears]

Thanks for your reply. My Dr is very easy to discuss the medication with and has said she would start me on a very low dose of Anag to see how I cope. I did mention to her about some people experiencing heart matters but, no, she didn't suggest assessing my heart performance. I will make sure I get it checked out before attempting to go on Anagrelide. Regards,Fran

[Hidden in reply to azaelea]

Have you considered Peg Interferon?

[azaelea in reply to Hidden]

I mentioned this to my Haemo when I saw her two months ago but she told me this was way down the possible drugs for ET. I would question this as I know there are many of our friends on here who are happily on Peg Interferon she didn't mention it at all this time. Maybe I'll suggest it again. Thanks for your reply. Regards Fran

[Cja1956]

Hi, Fran,

I've been on anagrelide on and off over the years and I personally could not handle the side effects. It was my least "favorite" drug. I've been on HU every day for 12 years and but it has been adjusted many times due to side effects. It's important to keep your doctor abreast of how you are feeling on these drugs. Some people are able to handle the side effects of anagrelide, especially if you start at a small dose. Everyone reacts differently.

I wish you the best.

Cindy

[azaelea in reply to Cja1956]

Thanks for your reply Cindy. I'll see how I go over next four weeks till I see Haemo again when it will be decided. She did say she would start me on a small dose. Everyone does react so differently to all these drugs I know. It seems that HU is tolerated very well by the majority of us. Regards, Fran

[Mazcd Partner MPNVoice in reply to azaelea]

Hi Azaelea, this might help you

mpnvoice.org.uk/about-mpns/...

best wishes, Maz

[azaelea in reply to Mazcd]

Thanks Maz. I'm having a read of this with interest. Will see what transpires when I see Haemo in 4 weeks. Regards, Fran

[jointpain]

Hi, my wife is on Anagrelide 1500mg a day and 500mg of hydroxy every other day for a year now, Her once high platelet count of 1900 is now a middle of normal and has been for 11 months now.

She doesn't have any side effects that we know of, and feels absolutely fine.

If your Dr suggests Anagrelide give it a go😷

[azaelea in reply to jointpain]

Thanks for reply. I am pleased your wife is doing well on both HU and Anagrelide and please send her my best wishes. I will see how things go when I see Dr in 4 weeks and will continue my research in the meantime.

[grgracey]

Yes ....so many side effects...too much to handle..

[grgracey]

We are the same azaelea I am off with hydroxyurea since I cannot tolerate anymore of the side effects and I am with aspirin only and platelets went up again so nervous of what will happen next...I cannot avoid to worry my self about this thing. I need to see my doctor I know she will get angry because I discontinue on my own the hydroxyurea medication. So hard living in this world if we have very serious health condition.

[azaelea in reply to grgracey]

Hello Grgracey, nice to hear from you. Is it Essential Thrombocythemia you've been diagnosed with? Same as me. I'm JAK2 Positive. I am hoping my platelets will not have risen too much more when I see Haematologist later this month .will see what she says, but I don't want to go on anything else if I can avoid it. What number were your platelets? I know it's difficult, but try not to worry. When do you see your Dr again? Let me know how you are. Regards, Fran