How fast do you start to feel hydroxyurea symptoms?

Posted by mlmk0601 @mlmk0601, Mar 16 1:14pm

Im 64 and have been diagnosed with ET since 2022. My platelets are now at 768,000. I Will be starting hydroxyurea 1 per every other day this coming Monday. I was wondering your experiences on how soon did you start to feel the onset of symptoms ? I’m so scared. I cried all the way home after picking up the prescription and then some.. not sure if I should have someone stay with me in the first week just in case I have a bad reaction.

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@bevjg

I'm an active 84 yr old female diagnosed with ET 2 years ago. My platelets rose to about 800,000 and I was hospitalized with multiple pulmonary embolisms. My Hemotologist started me on 500 mg HU daily. My platelets dropped to 240,000 quickly. I experience NO side effects. I truly believe if you are looking for side effects you will have them. The power of suggestion can be strong. Believe me you do not want pulmonary embolisms!! Take your medication and move on with your life.

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Great response.

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@ger63

I am 63 and have been on HU for 3 years. The only side effect I have experienced is a slight fatigue and pain in my hips for a few days after beginning the drug. I do have some skin issues to my lower extremities ( red dots) like Petechiea. Other than that all is good. I take 500mg daily for 5 days. I wish you the best.

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One thing I forgot to mention: I do have extremely dry skin and attribute this to hydroxurea.

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I started having heartburn from the very first dose of Hydroxyurea or Hydrea. . The doctor prescribed an acid reducer. I have been on several, (omeprazol, etc) but am now on Famotidine which I take each time I take the Hydrea, which is twice a day.
I have breathing problems which I have had all my life so it is hard to gauge, but lately I have had more episodes of breathing difficulties which could be from the 9 years of treatment with Hydrea. Either way, this is the best treatment for me right now with what I have to deal with. I have a good pulmonologist which helps.

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I have been taking Hydrea for four years. I can't really say that I can attribute anything in particular as symptoms of hydrea. OK, I have dry skin. I use a high quality moisturizer to treat that. I use Cetaphil.

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mlm0601, I have had little or no effects from taking Hydroxyurea (Hydrea) for 6 years now. I do not know too much about ET but I do know about Polycythemia Vera (PV) which is one of the evil Myeloproliferative neoplasm (MPN) sisters. I was diagnosed with PV 6 years ago but probably had it long before that. My platelets were in the high 500,000 range, now they are under 400,000. I get tired late in the afternoons and evenings but is that from being 65 years young? Who knows? I find staying active, going to my gymnasium, and being part of 3 volunteer groups helps immensely. I caution you not to look for medical advice on the internet. It is a landmine of partial truths, exaggerations, and wild information. I am told taking Hydrea outweighs the risks of no treatment at all. I wish you the best in your journey. I am about to start another busy day which is how I like it. J.

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@bluegrasspv2018

mlm0601, I have had little or no effects from taking Hydroxyurea (Hydrea) for 6 years now. I do not know too much about ET but I do know about Polycythemia Vera (PV) which is one of the evil Myeloproliferative neoplasm (MPN) sisters. I was diagnosed with PV 6 years ago but probably had it long before that. My platelets were in the high 500,000 range, now they are under 400,000. I get tired late in the afternoons and evenings but is that from being 65 years young? Who knows? I find staying active, going to my gymnasium, and being part of 3 volunteer groups helps immensely. I caution you not to look for medical advice on the internet. It is a landmine of partial truths, exaggerations, and wild information. I am told taking Hydrea outweighs the risks of no treatment at all. I wish you the best in your journey. I am about to start another busy day which is how I like it. J.

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Yes, age or ET is one of my constant questions. I'm 70 now.

Just based on how my dad's aging process went with ET, I'd say ET accounts for about half the fatigue issues. He and I were constitutionally similar: high energy, lean, active. We both crashed about age 55-60: falling asleep in our chairs in evening, less stamina, weight gain, and depression from feeling useless.

I may be in better shape because I don't smoke or drink, and I am more adaptable to spending an afternoon reading or knitting (though I am itching to wash screens and rugs now that spring is here). I also started ET treatment earlier, so I hope to avoid the clots and spleen enlargement Dad dealt with.

I recently learned that Dad's biological father died from a massive, sudden coronary embolism at age 61 back in 1959. The biological father's family told me that relatives noted he had become very tired. I have to wonder if ET was an underlying factor. It's not an inherited disease, but researchers think that the tendency to the genetic driver mutations might be.

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@loribmt

Welcome to Connect, @barbweav Thank you for sharing your positive experience with Hydroxurea. No one wants to take meds daily but when they can keep us healthy and avoid potential issues with too many red blood cells, or for others, too many platelets, the meds become life savers.

Did you have any symptoms leading up to your diagnosis of PV or was this found with routine blood work?

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Routine bloodwork only.

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@johnra

I have been taking Hydrea for four years. I can't really say that I can attribute anything in particular as symptoms of hydrea. OK, I have dry skin. I use a high quality moisturizer to treat that. I use Cetaphil.

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I have been taking Hydrea for PV for almost 2 years. I have had considerable hair loss for the last 8 mths or so. Bald patches on top and back of my head. Worse still is the rash which is driving me crazy, is mainly on my shoulders & tops of my arms, few patches on my chest & throughout my scalp. I tried moisturisers, to no avail. Did have rash for a couple of weeks last year but was so relieved they faded away. I'm tired all the time and struggle to do the basic housework. I will be 77 in June.

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@mags17

I have been taking Hydrea for PV for almost 2 years. I have had considerable hair loss for the last 8 mths or so. Bald patches on top and back of my head. Worse still is the rash which is driving me crazy, is mainly on my shoulders & tops of my arms, few patches on my chest & throughout my scalp. I tried moisturisers, to no avail. Did have rash for a couple of weeks last year but was so relieved they faded away. I'm tired all the time and struggle to do the basic housework. I will be 77 in June.

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Hi Mags17,
Are you taking a heavy dose of Hydroxyurea? Have you seen a dermatologist about the rash? When I had 7 vaccines in less than a year I developed psoriasis on my legs and scalp. The legs cleared up with prescription cream but the scalp somewhat bothers me. I must admit I scratch it. My hair is a little thinner but I am on low dose. I am 80.
I have to say I do not remember anyone mentioning rash from Hydroxyurea.
Best wishes, Eileen

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@mags17

I have been taking Hydrea for PV for almost 2 years. I have had considerable hair loss for the last 8 mths or so. Bald patches on top and back of my head. Worse still is the rash which is driving me crazy, is mainly on my shoulders & tops of my arms, few patches on my chest & throughout my scalp. I tried moisturisers, to no avail. Did have rash for a couple of weeks last year but was so relieved they faded away. I'm tired all the time and struggle to do the basic housework. I will be 77 in June.

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I am 72 and have been taking hydrea for about 12 years. I have recently started taking an extra 500 mg 3 times a week and have noticed considerable hair thinning. I also need a 20 minute nap around 4 pm.
My platlet count is always very high. Even with the extra doses my counts are over 750. I have lots of energy still and try to have a positive outlook on this disease. I consider it a nuisance and that helps me with the mental acceptance
Janice

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