I was taking Anegralide for 6 months- I had a heart attack purely because of the drug- I knew from the start it wasn’t right- I had all the bad signs on the instructions but at the time I only had a haematologist looking after me NOT an MPN specialist! I now have a superb MON specialist( this is so important)- he told me he never prescribes Anegralide as he is not comfortable with this drug.
I was on Hydroxyeurea for 24 years in variyi g strengths and a when it stopped working this is when I was out on Anegralide. I didn’t have many side effects in all of those years!
I am on Peg interferon now! Good luck!

Hi Patty2,
I understand how you feel about not wanting to try Anagrelide because of the heart side effects. It is true that no medication is perfect, and each medication has its own risks. I think you are right in saying that you will seek a second opinion from a specialist who will have more insight and help you find the best treatment for you. Your doctor will help you find ways to reduce the effects of Hydroxyurea or try other medications.
Sometimes seeing a doctor can open up new avenues that you were not aware of, and I hope you find the right balance. Good luck and stay strong..💗

Hi JillLancaster,
Thank you so much for sharing your experience. I really appreciate the information you provide about using HU. Hearing that you have not had any side effects and that it has been helpful all along makes me feel more secure. I hope to find the right medication for me as you have shared. Thanks again

The thing is, we have a blood cancer, and oral chemotherapy of whatever ilk seems the treatment of choice.

People with other types of cancer have treatments tailored to those, and deal with the side effects.

This is the land of MPN’s that we live in,

I was diagnosed with ET early in 2001 and have been on Hydroxyurea all but one of:those almost 24 years, but for a year fairly early on when I took Anegrelide.

Anegrelide controlled my platelets and I didn't have any side effects but there was a reason my hematologist took me off of it. I believe he was concerned about side effects or long term effects, but I don’t recall.

That said, Hydroxyurea dosage increases have effectively managed issues that have arisen over particularly the past 4-5 years, and one of the reasons my hematologist has said this is the best drug for me is because it targets all problematic blood levels.

I also believe that other medications I take would prohibit me from taking alternative drugs that I have read about here.

I transformed to PV last year, and have been at the maximum dosage of 2000 mgm of Hydrea a day for over a year. I needed three phlebotomies plus the dosage increases to get the PV stabilized, but have now not needed a phlebotomy in over a year and monthly labs have remained stable across the board.

I have been experiencing in recent months some side effects at this dosage, and those are currently being assessed and treated.

My hematologist and I are discussing what can be done in terms of reducing the hydrea dosage, tho my immediate concern is what will happen to my blood counts.

I don’t want to resort to frequent phlebotomies as an alternative, as those bring their own issues, so right now we’re waiting for the results of some diagnostics and treatment, and will reassess.

I’ve been thinking I need to update my “Story” here, to reflect these, and will do that soon.

I agree that anything we take, particularly at very high doses, will probably cause side effects, and it’s chemotherapy, after all.

I’m 75, and have been diagnosed with an MPN almost 24 years, and am grateful for my excellent treatment that has allowed me to live and enjoy my life with only a few inconveniences. And that includes the Hydroxyurea.

And let me add that I survived the “shower” of pulmonary embolisms that brought me to the ET diagnosis in 2001, and 7-8 years ago, when I was still on blood thinners, a small hemorrhage on my brain stem.