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How do You Manage Side Effects Of Hydrea or Hydroxyurea for ET?
I was diagnosed with Essential Thrombocythemia last November and am on Hydroxyurea 1500mg daily in an effort to reduce my platelet count, still in 9000s. Developed peripheral neuropathy & pain left leg, hip to foot. Oncologist thinks due to arthritis back per X-ray, wondered if others have this also, maybe due to the disease or meds?. Dr. says rare disease so difficult to predict outcome/symptoms. Anyone know of support group in Seattle area for this? Have called the local hospitals, cancer lifeline, etc.; no positive results.
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2.5 years on Hydroxy with two Hematologists (seasonal resident). Started with reading in the 800's, tried to control it with 500mg, edged up over a million a couple times, went to 750, now at 1,000mg for a year, I'm in the high normal range. 75, Xarelto for a year due to cardiac issues, stopped the lo dose after recent reports of incidence of brain bleed. Initially I was fatigued, possibly fogged but now, other than losing my hair EEK! I have adjusted to it. I have the rarer mclr mutation.
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2 ReactionsGood morning wa34937......I too have ET and have been taking 500mg of Hydrea daily for almost 4 years, also 80mg of aspirin. I still have fatigue but in different degrees. I have not lost any hair. I do have some itchiness and headaches but mostly doing well with exception of low hemoglobin that started two months ago. Having some trouble bringing it up to were it should be. Good luck with your treatment.....Claire39
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1 ReactionHydroxy is a carcinogen, I think it has exacerbated my sensitivity to sun. I had early melanoma removed last year, way beyond a simple removal, and let's just say I get a full body scan every six months. Everything has side effects. I'm getting blood draws every six weeks, my Hematol monitors my blood counts and says I'm ok, but he didn't see the melanoma coming? Life is good!
Wa34937, so sorry to hear about your hair loss and skin cancer. This is exactly why I’m hesitant to start the Hydroxyurea! It’s a powerful drug and, (as stated in my correction) my platelets are only in the upper 400 range and have been that way for 4 yrs. I think this drug is overkill in this situation. I’m attempting a second opinion at this point. Thanks for the input.
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1 ReactionI was diagnosed with essential thrombocythemia in January, and have been taking hydroxyurea since then. Between now and January, I have had minor illnesses on three ocassions. My doctor recommended that I discontinue the medication for a week each time I was sick. Recently I heard that starting and stopping the medication can increase cancer tumors. Since my disorder does not involve tumors, is there any risk in starting and stopping the medication for ET? I would appreciate any comments. Thank you.
Welcome @betherelynda and @arti4. I moved your recent posts about essential thrombocythemia and hydroxyurea to this existing discussion:
- How do You Manage Side Effects Of Hydrea or Hydroxyurea for ET? https://connect.mayoclinic.org/discussion/side-effects-of-hydroxyurea-et/
I did this so that you can read previous posts and easily connect with knowledgeable and supportive fellow members like @pearly @huronshores @claire39 @mjpm2406 @cblowers1 @tresman10 @esperanzam @stevehurlburt @lefsequeen @markdi @dwlowrance @wa34937 @mpt77 @lzimmerman and more.
Beth, I hope others will weigh in on your question about stopping hydroxyurea temporarily while dealing with other illnesses and how that might effect the progression of ET. May I ask how long you paused hydroxyurea each time? Were the doctors concerned about drug interactions with other medications you needed to take for other conditions/illnesses?
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2 ReactionsThank you, Colleen!
I paused hydroxyurea one week each time. The first time was for Covid in February, second time was for unknown (perhaps flu or cold), and this time for Covid again last week. I didn't have to take any other drugs during my illnesses, and I don't take anything else. Hydroxyurea is my only medicaton.
Thanks for any insight you can provide.
Lynda
Hello! I have been taking hydroxyurea for ET since 1994 when I was 39. Wow, that's almost 30 years! I have never discontinued HU usage during any illnesses, and I've never heard that I should. I've since had a brain aneurysm hemorrhage and subsequent stroke, so, honestly, I wasn't aware enough at that time to think about medications during that month of so of hospitalization. At one point when I was on the youngish side, I became worried about potential side effects of HU and was told by a Mayo hematologist I could stop. But after I stopped I had a few TIAs and just decided it was too risky to go off. I've never had any side effects from HU. I just take my 500 mg daily with my vitamins any old time of day and never give it another thought. I'm actually taking an extra 500 mg twice a week right now, as my numbers were creeping up a bit. Over the years my HU dosage has changed a bit here and there. I can tell when I start having a lot of headaches. But, honestly, my life is as normal as can be with ET and HU. I don't waste any precious life moments worrying about it 🙂 The brain aneurysm bleed was far scarier. It happened after an intense exercise session. So, my motto henceforth: too much exercise kills--haha! Chill and enjoy life!
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1 ReactionI also kept taking HU during my bout with COVID fall of 2020. I also take a daily baby aspirin, and have since 1995. I feel it's better to stay consistent than constantly fluctuating the dosage.
I am booked for long awaited hip replacement surgery end of August. May have to pause Hydroxyurea briefly then. I have not been advised as yet but will see Hematologist soon so he will advise then. I will post again, as to what he said to do.
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