How do You Manage Side Effects Of Hydrea or Hydroxyurea for ET?

Good morning.....I stopped taking Hydrea for all 3 of my covid vaccines, as my doctor recommended but I ended up in the hospital for a week with severe dehydration . I am booked next week to have my fourth and I have not stopped the Hydrea as others on the forum did not stop and had no side effects did your doctor say to stop meds in order to take the vaccine. It is difficult to get any straight answers here from my new hemotologist.
I have been on Hydrea for four years and do have hip to ankle pain off and on but mine is due to sciatic nerve pain. I do have periodic itchiness on skin and scalp, also fatigue. Overall I think I am better for taking Hydrea than not. You may find that your side effects will change from time to time and you may feel stronger sometimes. Good luck and do not hesitate to reach out again

I am 68, female, have had CALR ET for 13 years, HU for 4. No problems with rx outside of slight hair thinning and soft nails, which could be age or something else. Tried biotin but didn't notice a difference.

Am looking at mitral valve repair at some point. Am hoping to stave it off until I am >70, which would make me a candidate for trans-cath procedure instead of open heart surgery. Your Medicare program ultimately makes these decisions ...

I have intermittent brain fog and fatigue, but better on HU. No one tells you that you might feel *better* on HU. But, then, hemos really don't tell you squat: You're fine, add three more caps of HU per week, I have sick young people in the waiting room, go home and wait for your stroke.

Yes, I exaggerate. Somewhat.

But nobody is going to help you with ET but you. You don't belong in cancer support groups because you have "benign cancer" (a contradiction in terms), and your cancer isn't curable. You don't "look sick," as friends continually tell you, as if you were a fraud. Everyone wants to know "when will you be done with your chemo?" Or tell you to stop taking "poison" and go to a homeopath. And you have to wade thru tons of BS for every bit of reliable info on ET.

I have learned you have to MOVE even if you don't want to. I do yoga 5x per week, which helps. Also have an elliptical machine. Hoping this helps with circ.

Have to say that, on a daily basis, my bad back, bad sinuses, and teeth create more discomfort than the ET. But my dad had ET and, though he died of something else, the HU stopped working and he began to have spleen enlargement, clots, and bleeding episodes. It affected his quality of life the last few years.

So I sometimes worry what's ahead.

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.

I 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.

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!

Thank 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

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?

I 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.

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.

Hydroxy 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!