Morning @Erica @Jimbo165 and everyone- it’s so good to hear others having the same issues even though I shouldn’t wish it on others!! We should comprise a list of alternative symptoms that the medics never mention! 
Have a good day
Gillyj
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I haven’t posted for a while but have enjoyed reading all the comments on this forum this afternoon and congratulations to @Jimbo165 on the birth of his grandchild. Since I started taking pegasys my platelets have went from 622 to 484 and I have seen a reduction In the main symptom of this condition which Is fatigue, not much difference but I do feel less tired since I started taking the pegasys so hope that continues. I hope everyone Is keeping as well as can be
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Hello again @RA2000, couldn’t help but pop in to say how great your platelet count is! Good stuff, I hope the fatigue continues to improve too. Try not to worry should any increases happen in future blood tests, my haematologist reminds me that our blood cell numbers can be pretty variable for all sorts of non-sinister reasons.
I’m so glad your fatigue has lessened, it’s still my main nemesis with all this! What have you found that seems to improve your energy levels, may I ask?
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I still feel tired every day but since I started taking the pegasys I have noticed a reduction In my fatigue I don’t feel as run down maybe It’s because my platelets have dropped my consultant did say the pegasys could help with the symptoms, my employer has let me go down to a 4 day working week Instead of the 5 day working week I was doing so maybe that’s helped as well. I have also started taking a magnesium and vitamin B6 tablet every day, I wasn’t told to do this by my consultant but someone I know recommended giving them a try.
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Hi @RA2000 and @Duncan , really pleased to hear your platelets are down and you’re feeling better. My platelets have come down into the 300’s but my energy levels are still very up and down, one day bags of energy and the next very lethargic which is weird.
All we can do is keep taking the drugs
Take care
Gillyj
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Isn’t it heartening when treatment works @Gillyj, I love reading about it going well for folks around the forum! My fatigue can be a bit like yours, where one day I feel I can manage more or just need to do more, and in-between days tend to be more sedentary, with less walking and activity. My dog does not enjoy the in-between days so much!
I wonder too why this is, like maybe it’s related to when our body makes most blood cells, or something to do with dosages on certain days? Presumably when our bodies overproduce blood cells that takes up more energy. Hmm I’ll ask at my next appointment with my haematologist, this has got me thinking!
I get the impression @RA2000 from how my haematologist describes my regular CBC results that when our blood cell numbers are closest to normal ranges (even for people without blood disorders) then we are likely to have fewer symptoms. I’d say I still get side effects from hydroxyurea and other medicines, but not so much the Polycythaemia vera ('PV') I live with.
That’s great that you’ve been able to adapt your work hours, I hope you enjoy the extra time off! More time for you. It’s funny you mentioned magnesium and B6, I’ve read about them being taken to improve energy. I’m vegan and take an iron-free multivitamin and would say do pass any additions to diet past your haematologist—I was taking a different multivitamin with iron at diagnosis which probably worsened my response to treatment initially! Not to be alarmist, it’s good to check just in case.
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Hi @Duncan - do let me know what your haematologist says as I’m very interested to know
Gillyj
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Will do @Gillyj, not seeing him till the end of May but it’s on my list! He’s always so gracious when I take him my probably rather dim questions 
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Good morning @Ceri_BloodCancerUK @Chrispy @Duncan @DuncanB @Erica @Gillyj @Willow @RA2000 and anyone else I have missed off of the list.
Just a quick message before I hurtle off to work, slightly later today as it is a Bank Holiday, I want to wish you all a very Happy Easter/Good Friday to everyone one of you. I hope that it will bring peace and harmony to your day and all that you may be doing over this long, apparently holiday, weekend.
As always, stay safe, take care, be kind to yourselves and keep on smiling.
Best wishes to you all.
Jimbo165
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Thank you @Jimbo165, and the same to you!
I will be spending my day down at our new allotment, grappling with a bountiful harvest of weeds 
If anyone needs to contact the Support Services team, the phone line is open 10 - 1 today, tomorrow and Monday.
Happy Easter!
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Hello @Jimbo165 and thank you for your kind message. It’s a shame you have to work today. Hopefully you can have Monday off maybe? Happy Easter to you. Willow x
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Oh @Jimbo165 the first Easter wishes I have received, thank you.
I would like to wish you all a very peaceful. Happy Easter too. I note you are hurtling off to work.
I await my on line food shop and then I am going to meet a friend for a coffee/ hot chocolate or ice cream, I live on the edge. Then this afternoon I am meeting a friend for coffee/hot chocolate.
My son is coming round tomorrow morning for tea/coffee/cold water hot chocolate
As always, stay safe, take care, be kind to yourselves and keep on smiling.
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Happy Easter @Jimbo165 and hope it’s not too demanding a day at work.
Take care
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Happy Easter to you all @DuncanB @Erica @Willow @Ceri_BloodCancerUK and everyone else! I too am off to do some weeding at my daughters having done all mine! That sounds like a lot of hot chocolate @Erica enjoy 
Gillyj
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Good afternoon @Willow and everyone else, from a sunny, if windy (not me!) West Midlands, I hope you are all well and enjoying the extended weekend break from the routine madness of our “normal” routines. I am doing okay-ish, and had a relaxing day yesterday, which included meeting up with a friend for a cheeky carvery, speaking with all of my daughters, and avoiding doing anything else! Today has been a “recovery day” and, sadly (and sorry Willow) I am back at work tomorrow, Easter Monday. Work has been difficult for the last few weeks, following the sudden, unexpected and surprise resignation of my fellow lorry driver. There was only two of us and, for the last fortnight, as well as the coming week, I have constituted 100% of the HGV/HIAB force at my branch, and have covered approximately 1500kms in the last 10 days of work, not bad for “local” deliveries! Help is at hand as the new driver starts work in one week’s time. And it someone I know and have trained/guided in the past: just hope he hasn’t forgotten too much of what I had previously taught him! 
On the health front, I have seen one of the doctors at my GP practice, about my head pains (as opposed to headaches) and have been taken off of one of my dicky ticker meds and, I can report, the head pains have mostly gone, and are certainly down by about 90%, so I am taking that a s a very positive outcome.
As always, my Forum Friends, take care, stay safe, be kind to yourselves, and keep on smiling.
Best wishes,
Jimbo165
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Hi Gillyj
Yeah I’ve gone from crazy good balance to a stumbling womble haha !! To be fair though, I’ve had Essential thrombocythemia ('ET') for 22 years and I’ve only ever been on hydroxycarbamide/urea. So it’s taken a while for my balance to get worse, it started about 3 to 4 years ago, I had to get rid of my inline skates and just a few years ago I got rid of my motorbike too.
In the past 6 months I’ve started shaking/trembling too, arms and legs, weakness or more precisely a feeling of weakness and loss of control in my muscles. Absolutely ruining my golf game.
I am trying exercise bands for my arm strength to see if that helps and I volunteer do walking duties which seems to work for a while.
Hope this helps 
p.s. its trashing my typing too
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Dear @Timriach
Thank you for posting. I am sorry to hear about the symptoms you have been experiencing. They sound really distressing for you, especially if it is ruining your golf (wife of a golfer here!)
Does you haematology team know about your symptoms? If not, it is important to let them know. Whilst Hydroxycarbamide can affect the nervous system hydroxycarbamide information, these symptoms could be unrelated to your treatment. It is important to find out what is causing them for you.
Take care
Fiona (support services nurse)
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Hi @Timriach that sounds quite distressing for you, sorry to hear it! I was about to say that it could be caused by other conditions and have you talked to anyone about it- and then I read the nurses reply to you saying exactly the same thing! I nursed years ago and you can’t take the nurse out of a nurse!!
Take care and do keep us posted
Gillyj
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Good Evening All,
Welcome Tony in the first instance I am also newly diagnosed since January 2026 with Myeloproliferative neoplasms ('MPN') Essential thrombocythemia ('ET') with CALR mutation and I’m still getting used to it all I’m a 54 year old female who thought I was just going through peri menopause as some of the symptoms are the same but fatigue is my worst and night sweats and the breathlessness but I am surrounded by hills where I live in most directions. I find I can also get quite dizzy often after I’ve just eaten which is a weird one, then there’s the cramps and pins and needles too. I am just thankful i was put forward on the NHS pathway as would have struggled on. My platelet count in 2024 was 644 which was ignored by my GP, 517 last December and the good news I heard today when my bloods were done after diagnosis they were 458. The haematology nurses have told me today I am at low risk and to ensure I stay hydrated. My next appointment is in May which will be 4 months after diagnosis. So will have to wait and see. It’s a lot to take in and understand being told it’s a cancer but I can live a normal life which seems bizarre and a contradiction but I am coming to terms with it a bit more now as it’s not quite as worrying as my Mums lung cancer, which has grown unfortunately.
Having the forum helps to get information from others and to also vent.
Happy belated birthday to @Jimbo165 too, sounds like your coping amazing well with it all working full time too, do you get driving fatigue as I can’t concentrate the same but I think there’s just so many bad drivers anyway which doesn’t help.
I’m just glad I risked a little mini break to Spain last week despite having severe health anxiety and worrying about DVT etc. Is it normal to over think it all though?
Keep talking any advice is always appreciated x
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Hi @Sparklesummers,
On the health anxiety that you mention here and on another post of yours, I wanted to reassure you that you’re very much in fellow company here, and I think it makes sense that a diagnosis recalibrates your sense of risk in ways that are hard to dial back down (even years into remission, I struggle with this).
You’re always welcome to reach out for moral support on the forum, and we have a page on mind and emotions that covers a range of things people find helpful, including mindfulness exercises and information about counselling - it’s worth a look. And if it’s ever getting on top of you, it’s worth mentioning to your GP or haematology team, as there’s a lot of support available through both, or you can also self-refer to support via the NHS as well.
Of course, our Support Line is also there if you’d like to talk any of this through - 0808 2080 888 (option 1) or support@bloodcancer.org.uk.
Take care,
Ceri - Blood Cancer UK Support Services
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