Hi Jimbo.
Sorry to hear that your are struggling with your new meds. Hopefully things will settle down. I really struggled at first with my blood pressure meds but things improved after about a month. Even though it was negative news, thanks for your honesty and please keep us posted.
Happy new year!
Sammy
Glad to hear those headaches have remained not so bad @Jimbo165, and your ablutions are improving! A couple of positive side effects from switching to hydroxyurea Iâd say.
That dratted fatigue though⌠It took about 3 months of taking hydroxyurea for my fatigue to fade to tolerable levels, maybe thatâll be the case for you? Hopefully even faster!
Something I felt I could control when the fatigue was bad was drinking more water to help flush the chemo and any of its detritus out of my body. Iâm sure you know the drill about keeping hydrated @Jimbo165!
I hope your appointment goes really well this week and donât forget to enjoy your time off. Rest when fatigued and resume activities if possible. And hereâs to a less fatigued 2025!
Thanks so much for the updates and developments @Jimbo165.
Sorry to hear about your loss of all appetite, your increased tremors/shakes and your deepened fatigue levels and interesting that you are feeling very much more emotional.
It will be interesting to see what your consultant says, I would say donât hold back on the severity of your symptoms.
I also think of myself and if I lose my appetite then it has a knock on effect on my thoughts, emotions. medical issues etc, etc. however It might just be me that is such a complex being!!
When I was working full time I know all I did was work, sleep and run a house, it was no life and I realise that even more in hindsight. I definitely did not realise the emotional impact either.
Please do let us know how you get on at the appointment with your consultant on Friday.
In the meantime be ever so kind to yourself, you are very special to us.
I hope you enter 2025 smiling, I aim to if I am still awake.
Hi Jimbo 165,
Iâve been on hydroxycarbamide for about six months. At first my fatigue levels were worse. However, looking back I can see that fatigue has faded over time. Presumably my body has got used to the treatment (but Iâm not a doctor so this is only a guess). A few days ago my wife said she thought my fatigue levels are less now than before I started taking hydroxycarbamide. Thinking about the amount of DIY Iâve been doing over the Christmas break without needing to sit down and rest Iâm inclined to agree.
Wishing you and everyone reading this a happy New Year.
Lucky
Hello again @Lucky, happy new year. Just wanted to say how glad I am to read that your treatment is going so well!
For me it was such a relief when I started noticing my own fatigue fading away. There were points where I wondered if Iâd always be so zoned out and lacking energy too.
Long may our improved energy persist! Did you notice anything particular helped with your fatigue?
Hi Duncan,
Thanks. The reduction in fatigue was so gradual that I cannot link it to anything in particular. My guess is that treating the Polycythaemia vera (PV), i.e. the underlying cause, is whatâs helped. I hope it continues to improve.
Yes, it is a huge relief. Thinking back, a year ago I couldnât have done half of what Iâve achieved in the past week or so.
Lucky
Good evening @Lucky and @Duncan, your words and experiences are heartening to read as it offers the potential for some relief, albeit in the future; I just hope that my fatigue levels donât get any deeper than they currently are!
I am due to undergo my âHGV Driver Stress Testâ on the 20th of this month, to allow me to carry on with my job, and Iâm not looking forward to it. This will be my 3rd one since my heart attack back in 2017 and it involves 9 minutes on a treadmill at ever increasing speeds and inclinations, all whilst connected to an heart monitor with the doctor trying to hold a conversation with you! No wonder its called a stress test!!
It is what it is although a nice lottery win would obviate the requirement for the test. Mind you, Iâd need to actually DO the lottery first.
I hope you have both had good New Yearâs and are ready for whatever 2025 throws at us. I donât want to worry anyone but the year starts off with WTF, and the last time that happened was in 2020, the year that Covid19 struck! 
Take care, stay safe, be kind to yourselves and keep on smiling.
Best wishes,
Jimbo165
Happy new year to you too @Jimbo165! Had a quiet evening after a lovely blowy coastal hike yesterday and am heading out soon to start the year as I mean to go on⌠with coffee!
Iâm heartened that youâre heartened @Jimbo165! I really do hope your fatigue fades like it has for me and by the sounds of it @Lucky too. Maybe it might be the case that youâll have a sort of plateau of fatigue and things will improve from there? It seemed that way for me, my plateau being an exhausting camping trip I could barely manage as my fatigue was so horrible. It was the only time I needed intravenous saline adding during phlebotomy once I got back from camping as I was so dehydrated and weakened! Grim.
As for that stress test, well I know how horrible they can feel. Had a few since my heart attack. Maybe you could take some light walks in advance? Youâve got a few weeks to get into the habit!
As for it being a WTF year I was like whatâs happened already?! What horror is it now?! But of course the year starts with a Wednesday, ThursdayâŚ
And I agree @Lucky, I think the fatigue fades as our bodies get used to tolerating the cytoreductive qualities of the hydroxyurea. Donât quote me on that, Iâm certainly no doctor!
To muscle in on your conversation @Duncan @Jimbo165 @Lucky you have got me thinking and I know you are talking about another sort of stress test @Jimbo165, but I always say that I have never dealt with what personally stresses me well since I was diagnosed and it fatigues me .
Well I think my fatigue calmed down very slightly when I came to terms with my diagnosis and also understood my fatigue.
Obviously treatment based fatigue is something different.
I will be thinking about you @Jimbo165 and all I shall say is rather you than me, I certainly could not deal with the stress of a stress test, please do let us know how you get on. Take it steady.
Hi Jimbo165,
Thanks. Hope the stress test goes well.
Lucky
Oh @Erica muscle in, I say! Your expertise in tolerating fatigue has treated you well and youâre always here to wisely advise us relative newbies. Iâm so glad your fatigue is not as strong as it was. I find even just a slight increase in energy these days gives me the confidence that I can manage more and more, like a good news snowball 
And by the way, I bet you could ace a stress test!
Hi dear @Erica, I hope you are well. Yes, it seems slightly ironic that I have to undergo the stress test. The only reason I do is because of my heart attack back in 2017 and before my Essential thrombocythemia (ET) diagnosis. If I hadnât been so stupid and NOT had a heart attack then my HGV medical would have only been a paperwork exercise.
I have been through this twice before, the first time about 2 months after my heart attack, and then 3 years ago at ârenewalâ time.
I do wish I wasnât sooo fatigued though, but it is what it is and, with @Duncan and @Luckyâs encouraging experiences, there is the hope that it may ease off in time, but not, I fear, before the medical fraternity, and my own bodyâs reluctance to cooperate with said medicos, have arrived at the correct dosage of Hydroxycarbamide.
Well I am off to bed in the hope of some sleep before work âhoves into viewâ in the morning.
Take care all, stay safe, be kind to yourselves and keep on smiling.
Best wishes,
Jimbo165.
Hi Sammy,
I have been taking hydroxycarbomide at various doses for 3 years with no hair loss. It is also keeping my platelets at a normal level.
Good luck !
Hi @Ellison welcome and thanks so much for your experiences on hydroxycarbomide.
I really look forward to hearing more about you so please do keep posting.
Take lots of special care of yourself.
Hi Ellison,
Happy new year!
Thank you so much for your words of advice. Mostly people tend to visit these sites when they are suffering or in need of support so it is great to hear from you with positive words. I am hoping to hear about more good experiences.
Thanks again for taking the time to reply to my post
Sammy x
Hello, I was diagnosed with Essential thrombocythemia (ET) 3 years ago, im now 66, I was prescribed Hydroxycarbamide from day one, dosage was doubled, then doubled again and finally to the dosage im on now 500mg 2 tablets daily every day.
In the early days i had some of the side effects but now they are quite rare. I still have days where i feel very tired but as i work full time you just plug on.
I havnt let it curtail my holiday destinations having been to Cyprus, Spain and Italy, just use plenty sun factor and i think you will be fine. Live life and dont let it dictate your life, things could be so much worse.
Good evening dear @Erica, and everyone else, I hope that you are all okay and that 2025 is going well for you so far.
Just an update for you following on from last Fridayâs visit to LRI. My platelet count has come down a bit, to the mid 400âs or so, which is good to hear. However, and lets be honest there seems to always be a âhoweverâ with me, my liver (never the most reliable of organs) and my kidney (usually well behaved) are under stress/struggling with the new medication, and the function of both has deteriorated some.
The consultant said that she isnât too worried about my âorgansâ, which is easy for her to say as they arenât hers, and that there can be some âseasonal variationâ at this time of the year, which I take to mean that we all eat and drink too much at Christmas and New Year. 
The other improvement is that I have gone back to 4 weekly appointments for now.
As always, take care, stay safe, be kind to yourselves and keep on smiling.
Best wishes,
Jimbo165
Oh @Jimbo165 yes, there always seems to be a âhoweverâ and I agree with you they are called âvital organsâ for a very good reason and I am sure you are very attached to yours.
I had to laugh at âseasonal variationsâ that is a new one on me and sounds like you added too much salt to your dinner or youâre a weather report.
Good news you are on 4 weekly appointments
Oh, I am smiling from just reading your post, now I cannot get the Four Seasons by Vivaldi and The Four Seasons âOh, what a nightâ out of my mind
Hi Colin,
Thanks so much for sharing. My son is only 12 and he certainly wants to holiday. I know I can use sun cream and be in the sun but without my long curly hair I would feel so vulnerable and unattractive. I know it sounds so shallow and I will certainly take everyoneâs advice and experiences very seriously.
Take good care
Thanks again for sharing and all the best for 2025 xx
Sammy