Connect
← Return to Long term medication Hydroxyurea
Discussion
Long term medication Hydroxyurea
Blood Cancers & Disorders | Last Active: 5 days ago | Replies (98)Comment receiving replies
@lindy25 That’s what I thought too. I thought maybe I overdid it at the gym, then thought I was getting the flu. It is cumulative so the side effects build over time. By the time I figured out what was happening, I couldn’t move. Every day was worse than the one before. Interferons are now the go to treatment for MPNs and will be officially FDA approved the end of this month. I am taking Pegasys and will be switching to Besremi soon. It is the only thing that can reverse the burden and ease symptoms. Plus the side effects ease over time as your body adjusts.
Replies to "@lindy25 That’s what I thought too. I thought maybe I overdid it at the gym, then..."
@mdramsey48 glad I read your post, I've bn taking HU for 3 years, I'm 78, In past month my legs hurt so bad I am having a hard time walking my dog. I'm seeing a specialist in another city in September for another opinion about my ET and taking HU. My platelets are not coming down but I can't continue taking the HU.
Connect
@mdramsey48
Good to hear of the different treatments offered and tried. I have had success with the HU so far. The biggest problem I have is my foot pain and I really think that is more the disease progression than the HU. Plan to stay on it until I realize different. I know it is toxic... I wonder what isn't as far as treatments go? 🙂 I also had blood clots when first diagnosed but none found since. I was on Warfarin for about a year and since no actual blood thinners except for baby aspirin, ginger, and other natural supplements as well as the Hydrea which is supposed to keep the platelet production suppressed. going on 11 1/2 years past initial diagnosis. All this time on Hydrea. BTW, may be important to mention that I take the Hydroxyurea exactly like my first hematologist/oncologist told me to: one 500mg capsule in the AM, one at bedtime. Also, I did notice as soon as I began taking them all those years ago, I had a pretty bad heartburn reaction. He put me on an acid reducer and it has not been a problem since, (except if I eat really spicy or greasy foods). I am taking Esomeprazol at present, one capsule a day. Seems to control the heartburn effect.
But this is really good that we can listen to others experiences and encourage on another.
Thank you for taking the time to post here.