ET and fatigue

Havent posted for a while......I was diagnosed with ET over a year ago and have been on Hydroxycarbamide ever since. The main effect on me has been fatigue, however my haemotologist says that neither the condition nor the medication would cause the dreadful tiredness I feel. From looking on the site Ive noticed that fatigue crops up a lot.

I do eat a sensible diet and try to keep myself hydrated.

What are other people's thoughts on this

24 Replies

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  • I have always had fatigue. Sometimes it's really bad other times manageable. I try to exercise a little and eat good. Not much else you can do. It is what it is. My hemo said it is part of the pv.

  • Hi,

    Yes I'm just the same, diagnosed a year ago, on hydroxycarbamide and aspirin of course....... and just SO TIRED! Is it just an age thing? So many people on here do mention it, but then, so many are over 60. I don't know. Getting a little frustrated with my haemo consultant.... Looking for a specialist. Wish they'd not found out at times, they were looking for something else at the time!

  • Hi i get really tired and my heam doesnt think its my mpn im over 60 still holding off starting Hydroxy , but due for blood test this week then see consultant on 27 th problem is too i have other conditions also so maybe fatigue due to them other blood tests my GP done like iron etc were normal im on permanet eye drops too for glaucomma they make my eyes sore and look and feel tired so its all a bit hit n miss for me 😒

  • Thank you folks...I'll be 57 soon ... don't think its an 'age thing'. Even though my haemo says otherwise I do believe my fatigue is caused by the ET or the medication or both.

  • Hi Diane

    Try and change your haematologist, 80% of MPN patients suffer fatigue in some degree, this can be mild or extreme fatigue, a lot of people do not realise what fatigue is and think its just feeling tired...we know its not and if your haematologist isnt aware this is a possible symptom then he or she needs to spend a little time educating themselves on what an MPN is and how people suffer as a result of. I can understand GP's maybe not knowing but a haemotologist not knowing is somewhat negligent on their part.

    With regards to alleviating fatigue, keep hydrated and try and get as much excercise as you can, i know thats not easy but it really does help.

    All the best

    Paul

  • Thank you Paul

  • Hi Diane - fatigue hasn't been a major issue for me over the last 13 years since I was diagnosed with ET but is an increasing problem recently. Is it the ET itself, my medication started 9 months ago (Pegasys) or just getting older (60 recently) and still leading a very busy life..? I just don't know and while I'm reluctant to attribute every symptom to ET I don't just want to ignore it either. I cope ok now but if it gets much worse it will be an issue - I guess times will tell... Best of luck with yours..! Andy

  • Hi, I was diagnosed with ET at the age of 51 that was 4 years ago and it was the fatigue that I complained about for years no one picked up on the high platelets and sent me to a sleep clinic and eventually gave me speed to keep going I was on this for over 3 years when I went back again to my doctor to say I was still suffering severe fatigue and was not happy to continue to take speed to keep me going finally blood test platelets 1000 put on aspirin until platelets reached 1700 then on hydrea and in the last 6 months changed to anagrelide. Still have the fatigue and believe it will always be part of my life now. I find after about 12 hours of getting up I start to really feel the fatigue but have to work and most days this is up at 6.30 and get home around 7pm most evenings, So to answer your question "Fatigue" is a big part of the condition.

  • Thank you.... you see I was diagnosed with ET and put immediately on to hydroxycarbamide, so I always assumed it was the effect of the meds

  • Hi Diane

    I have ET diagnosed 2012 at 52. Fatigue was one of big problems I had leading up to and at diagnosis. I was bone weary all the time. I though it would go away once my platelets were under control as they have been for long while now. I am on hydroxy ( but very low dose). It is still there if not as bad. Paul I think is right it is a symptom of MPN and many of us experience and have to live with it whether all or sometimes and can vary from mild to severe. Don't have any answers I am afraid though I try to stay hydrated and exercise a little as Is recommended. Though I am not a gym bunny more walking. Take care Lizx

  • Urghhhhh it makes me mad when haematologist say this !!

    Imo if you are under the care of someone who says this then you should move to someone who really understands the condition!!

    Fatigue is a massive problem to many of us, I have posted on here about hitting the wall! It is not about feeling a little tired, but more about an overwhelming feeling of exhaustion. I have found that drinking water helps a bit.

  • Hi Diane

    I have been in your boat, and told the same thing,early on while on HU. I have been on HU, AG, a clinical trial SAR and now Peg interferon, and through them all the fatigue has been my biggest complaint, I belive the condition is the cause and meds add to it.I would suggest asking for a second opinion and see a specialist.

    Have fun,

    Ourlife

  • Hey Diane... :)

    I am only recently diagnosed with ET (prefibrotic MF).

    I commenced on 500mg for the first 4 weeks and then to 1000mg for the last five.

    I found the fatigue (mental fog unbearable), and the nausea keeps me awake at night depriving me of my sleep.

    I did notice during a very short break before changing over to Interferon, that I did feel a little brighter mentally, if that makes sense. But I still grew tired relatively easily as the day progressed.

    Hence, the fatigue and nausea might be a latent condition of our blood disorders, however, the associated mental confusion I was feeling thus far, I am beginning to attribute to the HU, as I am feeling a little clearer...

    Steve (Sydney)

  • Paul42 hit the nail on the head with his comment. The one recommendation to help combat fatigue is exercise. In the early days of my ET I had four young boys to bring up and worked as a mobility instructor for visually impaired children which involved a lot of walking and I guess I was on the go all the time and either the exercise I was getting or the fact that I didn't have time to be tired helped me through. It is a different story now I am retired and the children left the nest! I can get fatigued just watching other people exercise! LOL! No, seriously, fatigue is one of the most common symptoms across the board of MPNs and your haematologist should be aware of this. In truth I can set about doing a task now and suddenly it's like somebody threw a bucket of fatigue over me and I have to take a break before I can carry on

    I hope it's reassuring to find you are not the only one suffering. Best wishes, Jan

  • Thank you so much Jan....

  • I'm only really echoing what others have said but I wanted to add my voice to say - yes fatigue is definitely a symptom of ET. I'm not on medication [except aspirin] so I can't comment on the effects of that but I do have fatigue and a particular version of tiredness which is not like 'normal' tiredness. I was only diagnosed with ET last year when I was 35 but the symptoms I've had for the last few years seem to correlate with ET-like symptoms.

    Unfortunately not all haematologists agree that fatigue is a symptom - I've had a different doctor at each appointment [which is annoying in itself] and I would say about half acknowledge fatigue as a symptom of ET.

    In my experience and from what the doctors have said - hydration is a big help as is exercise even if it's just getting up and walking about a bit.

    Good luck and I hope you do eventually come across a doctor who can understand a bit more about MPNs!

  • Hi. I think it is a combination of both drugs and condition. When I was on Hu (1500) daily I had many "noodle" days. I am lucky as don't work and could just listen to my body when necessary. Now on Interferon the "noodle" days are less but still need an afternoon nap.

    Hope you find some resolution to this.

    Wishing you all the very best.

  • Hi Diane, as you can see there are a lot of people with MPNs who experience fatigue, and we are not all over 60, you might find the articles from Prof Mesa and Dr Scherber about fatigue in our November 2015 newsletter to be of help mpnvoice.org.uk/documents/n...

    perhaps you could ask your haematologist to have a read of the articles, I can post you a copy if you can't download it. Best wishes, Maz

  • Hi, After 4 years my Haematologist still says he has no idea why I'm so fatigue or any of the other symptoms I get come to that. I recently did the survey and have printed off the page where we had to score each of the symptoms there if we got them. i will be , proudly, presenting it to Mr Hofner tomorrow morning and my appointment!! stick that where the sun don't shine!!!!!!!!!

    Nod

  • I'm having an iron infusion in a month!!!!!!!!!!!!!!!!!!!!!!!!! That'll work....NOT.

  • Hi Diane

    I was diagnoised last year when I was at the age of 45. At the moment, I do not feel any fatigue yet, as I have not given any medication yet. Not even aspirin but I was being monitored every 3 months by blood test. I exercise 3-5 times a week. I do cardio and body weights. And I try to drink 2-3L of water everyday. Not sure it helps but so far so good.

  • thank you Swess

  • Like many others have said, look for another heam. Fatigue has been acknowledged for quite a while now and your heam is obviously not following latest data. Where are you based? Maybe someone here can recommend a good heam in your area.

    Good luck

  • Thanks for your reply...I'm based in Co Down, N Ireland

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