ET and hydrea: I have ET and after 6 years I... - MPN Voice

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ET and hydrea

Silveryeam2 profile image
7 Replies

I have ET and after 6 years I stopped taking my Hyderabad 1 year ago because they kept increasing my dose and was upsetting my stomach.

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Silveryeam2
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7 Replies
hunter5582 profile image
hunter5582

Some people simply cannot tolerate hydrea (HU). Others can and do benefit from it. I am also one of those who cannot tolerate HU. It was also ineffective for me. Fortunately, there are alternatives. Pegasys is the other first-line treatment option for ET. I found Pegasys both more effective and much easier to tolerate. I later switched to Besremi. Note that I have PV with both erythrocytosis and thrombocytosis. The interferon have done a much better job of managing the platelet levels in my case.

Your care team should have already reviewed all of your treatment options with you (Pegasys, Jakafi, Anagrelide, other things in clinical trials) . Should you find that you do need to consider cytoreduction, please be sure to review your treatment options with a MPN Specialist. mpnforum.com/list-hem./

All the best moving forward.

1219Smokey profile image
1219Smokey

That is exactly what happened to my husband, unfortunately after almost three years I amstill arguing because if you have an haematology unit who dismiss everything that they

are told then that is lethal. I wish you well and hope that you always get honesty.

Sandra

Jamesxyz profile image
Jamesxyz

How many pills were you taking?

Mirror368 profile image
Mirror368

Were you drinking sufficient fluids? It is recommended you drink a minimum of 64 ounces of fluids a day. If my stomach bothers me at all I have a glass of water.

How many Hydroxyurea were you taking? Low dose aspirin?

Eileen

Sheena2020 profile image
Sheena2020

I take between 500 and 1000 mg of hydroxyurea per day. At first I had stomach upset. I started taking it after dinner and I drink a whole glass of water with it, and that has helped.

Scaredy_cat profile image
Scaredy_cat

like most people who reply on this forum...you need to see an mpn specialist. They are more aware of alternative medications

TLJ-1 profile image
TLJ-1

Since hydroxyurea has a half-life of 1.9-3.9 hr in the body (a pretty broad range for us humans but still short), it is probably better not to take all of the capsules at once during the day as some people seem to do. If your dose is 1000 mg, then take one in the morning and one at night. This may decrease some side effects and could improve efficacy.

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