what if I stop taking hydroxyurea?: hi everyone... - Fight MPN

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what if I stop taking hydroxyurea?

mustabshra profile image
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hi everyone, again need some advice. Three weeks ago my platelets suddenly creeped up 1500. Dr put me on hydroxyurea(2 tablets daily) . Before this I was only on aspirin for seven years with ET. Today I saw Dr. again . My platelets are 1100. Days asked me to continue taking hydroxyurea, but I am afraid of this drug. As it’s highly toxic. If I stop taking it, will my platelets again go up?

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mustabshra
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hunter5582 profile image
hunter5582

To answer your question, if you discontinue the hydroxyurea, your platelet levels will likely go back up.

With platelets at 1500, cytoreduction is likely indicated. Note that you are at increased risk for hemorrhage as well as thrombosis with platelets that high. Specifically, you would be at risk for Acquired von Willebrand Disease (a bleeding disorder).

In deciding to initiate cytoreduction with any drug, there is a risk/benefit analysis you have to do. I believe that you are a younger woman with ET. Most people in your age group would stay with aspirin-only; however, with platelets at 1500 your risk profile changes. The question would perhaps be better phrased as "Which cytoreduction agent is best for me?"

There are more choices for cytoreduction than hydroxyurea. Pegasys is another medication used, particularly for younger patients. Pegasys is usually preferred for people of childbearing years. Note, however, that Pegasys can take longer to lower platelet levels than hydroxyurea. Anagrelide is another option but most would prefer to use Pegasys. There are also drugs in clinical trials/studies such as Bomedemstat, Besremi and Jakafi.

Suggest that you discuss a long-term treatment plan with a MPN Specialist. One of the options would be to stay on hydroxyurea for a while to achieve a more rapid reduction in platelets then transition to Pegasys or another medication. You could also choose to transition to another medication now if you feel that the risk/benefit profile for that choice is preferable. This is not a black & white decision. It is a judgement call that must be informed by your treatment preferences.

Wishing you all the best moving forward.

brightlys profile image
brightlys

Hunter already gave a stellar answer and I just wanted to share that I was briefly taken off HU when we thought it was causing a skin reaction (it turns out the rash was something else) and my platelets jumped back up within 9 days. HU has a short half life and leaves the body pretty quickly.

I get your concerns about HU though. I have similar concerns, but I have a high symptom burden and so I've decided to stick with treatment because it helps ease symptoms for me.

I've heard great things about Pegasys and that does seem more recommended for younger patients. I would love to go on it but I get ET-induced migraines and the specialist I see is concerned it might aggravate the migraines. But if he thought it was a good fit for me, I would switch to Peg in a heartbeat.

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