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Early Side Effects Of Hydrea

A myMPNteam Member asked a question 💭
Melbourne, AU

I’ve just started hydrea after two years of venesections and monitoring of my PV. Bloods are now in the red zone and finally have been taking the proffered hydrea. A few days in, I am struggling with extreme tiredness and low level dizziness. Can anyone tell me if this is normal in the early weeks of taking hydrea 500mg daily?

June 9, 2023
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A myMPNteam Member

It may take a couple of weeks for you to get used to the dosage. Tiredness and dizziness seem to be a common side effect of the drug. As someone has already suggested, you may want to take your dose at bedtime and leverage the tiredness for a good night's sleep. Remember that you're putting a 'poison' of sorts into your body and your body's reaction to it is 'normal' If I take my dose in the morning, I can guarantee that I'll be both dizzy and tired in about an hour after. It generally passes within two hours, but I'm not quite up to my usual game. I take a fairly powerful blood pressure medication at night, which I've found somehow doesn't like being mixed with the Hydrea. I now take it in the late afternoon or early evening, after I've done whatever it is that my 76 year old body is still capable of doing🙂. It's also important that you don't let the fatigue take control of your life. Make a point of getting out and doing something every day, even if it's just a brief walk around the neighborhood. I've found, as have others, that exercise helps with both fatigue and dizziness. Good luck, and welcome to a club that nobody in their right mind would want to join!

June 10, 2023
A myMPNteam Member

Fatigue and dizziness are common hydroxuturea adverse effects. While some people tolerate HU and benefit from it, not everyone can. Unfortunately, some of us simply cannot tolerate this medication. I am also one of those who could not tolerate HU. I experienced toxicity even at very low doses. I have done much better on the interferons (Pegasys/Besremi). They have been much easier to tolerate and more effective than HU. In 18 months on a low dose of the IFNs, my allele burden dropped from 38% to 9%. I am very pleased with my response, maintain a complete hematologic response with minimal side effects. I feel much better now than I did when on HU and using phlebotomies. My quality of life has improved significantly. I feel better now than I did 10 years ago.

You do have other choices if you find that HU does not suit you. Jakafi is another option for those who fail on HU. Besremi is now recognized in the NCCN guidelines as a first line option for treating PV. You do not have to fail on HU to consider it. Note that Besremi and jakafi are both very expensive. (Roughly $14,000/month) HU is very cheap. ($25/60 tabs). Insurance formularies prefer the cheaper drug even when they are not better for the patient. It is harder and more work for the prescriber to get Besremi or Jakafi approved. You may need to advocate for yourself should you choose to pursue this option.

It does help to have some basic information about hydroxyurea when you are taking it. Here are some resources to help answer some of your questions.

https://www.drugs.com/monograph/hydroxyurea.html
https://online.epocrates.com/drugs/230/hydroxyu...
https://www.oralchemoedsheets.com/sheets/Hydrox...
http://ethrombo.blogspot.com/2017/10/taking-che...

It is best to review your questions and treatment options with a MPN Specialist. Note that most doctors, including hematologists, have very little experience with MPNs due to how rare they are. Here are two lists.
https://mpnforum.com/list-hem./
https://www.pvreporter.com/mpn-specialists-canc...

Wishing you all the best.

June 10, 2023
A myMPNteam Member

Hi, I had extreme exhaustion when starting Hydrea. I decided to take it at bedtime and it has made a major difference. I am still tired but not exhausted. If I overdo doing things for a day or two my exhaustion comes back. I am learning to pace myself and learn my limitations. I try to walk every day which helps also.
All the best to you.

June 10, 2023
A myMPNteam Member

G'day Peter... :-)

That is a rather interesting set of responses you've received thus far...
My own personal experience of HU was that I found it completely intolerable!
I suffered from "Brain Fog", mouth ulcers (that have never completely healed), & the most dreadful fatigue.

One suggestion above may help a little, (taking at bedtime). However, if I were you, I would be talking more w/ many others before deciding to keep taking HU...
In our little Aussie MPN-MATE group, there are a number of people who were taking HU for a great many years. One of them Warwick, has now had over 50+ skin cancers removed, (including a part of his ear). Another, developed a seriously painful leg ulcer, that simply refused to heal until HU cessation was enacted...

On the Central Coast of NSW, there's a Dr Cecily Forsyth, who treats MPN patients w/ Pegasys' Interferon. One of those (Mark), is now only injecting once every 6 weeks, & all his bloods are within normal range. The other possible advantage is that Pegasys' also has some peer-reviewed scientific articles, that suggest a complete molecular reversal may be possible. In other words, a 'Cure'!

Best wishes

Steve
(Sydney)

June 10, 2023
A myMPNteam Member

I had unusual fatigue and bone/muscle pain after 2 weeks of Hydrea and was trying to cope, but during week 3, I broke out in hives. Stopped taking it immediately and two months later when I saw the MPN specialist at Vanderbilt, he started me on Ruxolitinib.. What a difference for me! So many symptoms are gone now and I’m feeling better than I have in 2 years.

June 10, 2023

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