Any advice?

[Dawn79]

Hi everybody! I have been on hydroxyurea for two years now. It is not keeping my platelets at a level where my oncologist is comfortabke with. They are constantly up and down. I am on 14 pills a week right now. My doctor wants me to switch to Anagrelide. I am not sure about this treatment. Has anyone else taken this. He has also ordered a LDH on my bloodwork. Any info or advice would be greatly appreciated.

[wiskie]

Hi Dawn, I was on Hydroxy for 10years, then they stopped working, also been on Anagrelide, but made me poorly. I am now on Pegylated Interferon injections & pleased to say my platelets are more stable after then rising to 2000. Unfortunately these drugs have side effects, I was taking 21-28 hydroxy at one point & then developed skin cancer too .

Wiskie

[nodmeister]

When I tried it I was like a 90 yes at old with emphysema! I could hardly walk a couple of yards without being out of breath.

[nodmeister in reply to nodmeister]

Stupid auto correct, should say :year old's!

[Tico]

Hi Dawn. I can't really give you any advice because I have the same problem as yourself with platelets constantly up and down with big variations in highs and lows. A number of haematologists can't explain this. I have not tried Anerglide but I have discussed interferon with him. At the moment especially during covid I am unwilling to try any potentially potent or toxic new drug because of potential side effects. I have been on Hydrea for around 12 years and at my highest was taking 35 a week, luckily only taking 21 a week now. I can only advise you talk to your haematologist and decide whats best for you. Good luck.Tina.🤗

[Dawn79 in reply to Tico]

Thank you. I have different feelings about starting a new medicine. With all of the covid does make it more concerning. Thank you for your time. Good luck to yourself and best wishes.

[Wyebird]

I’m on both - 16 hydroxi and 9 anagrelide.

Please note I can’t tolerate 10 anagrelide.

Also four years of rising platelets and rising meds - I’m stable and have been for a few months.

[Cja1956]

Hi, Dawn, I’ve been on hydroxy since 2008 at various doses. Over the years my doctor also tried anagrelide, but I couldn’t handle the side effects. In my case, I found that platelets always fluctuate. At one point around 2016, he told me I had progressed to PV from et and he put me on Jakafi. By 2018, I developed anemia and I could barely function. He seemed perplexed so I finally got the courage to find a new hematologist and I found an mpn specialist who said I didn’t progress to PV, but to post ET MF. The one constant in all this is the Hydroxyurea. I always took it in conjunction with the other meds. Jakafi caused the least side affects, but my doctor thinks that it’s one of the reasons I developed anemia. The anagrelide caused heart palpitations, increased brain fog, and dizziness. Some people on the site say anagrelide takes some getting used to but I was only 52 when I started this whole process and working and I couldn’t afford to wait to see if I could handle the side effects

I hope I wasn’t too confusing. It’s just that there have been so many changes in my medications over the years and it’s hard to remember details.

Good luck on your mpn journey.

[Dawn79 in reply to Cja1956]

Thank you! Not confussing at all. I have just felt so tired and sluggish lately that i dont know what to do. I have to push myself to get anything done and it seems its hard to keep one foot in front of the other. Im 47 and feel awful. I wish you the best. Thanks again for your time.

[hunter5582]

If 100mg/day of HU is not working, perhaps a different med is in order. There are other options. Some people benefit more from PEGylated Interferon or Ruxolitinib. Anagrelide is a second tier med as well. ALL of these meds have a risk/benefit profile. We each respond differently to them.

If you have not already consulted with a MPN specialist rather than a regular hematologist, this would be the time to do so. Just in case you have not seen it, here is a list mpnforum.com/list-hem./ .

[Dawn79 in reply to hunter5582]

Thank you for your reply. Very intereating. I will look up doctor in my area.