HYDROXYCARBOMIDE - SO TIRED!

Hi to all,

Just thought I would drop a line to ask if anyone taking this drug suffers with any tiredness or headaces? I have had ET now for 16 years and been on Hydroxycarbomide for 9 years. Lately my WBC has dropped to a low level and been exhausted with bad headaches. I am 48 and run a training company bringing up 2 teenagers on my own. Find it so hard to even wake up let alone get out of bed!. I take 1500 mg a day and platelets average about 450 - 500 every month. I have also noticed my feet are burning in bed..how strange? Also does scare me with the thought of possible leakemia after 20 years plus..does anybody share these concerns/ailments?

Denise

20 Replies

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  • Hi Denise

    I was diagnosed with ET last year and was started on Analgrelide, which didn't work for me and then put on Hydroxy, I take on average 1000/500 alternate days this keeps my platelets at around 500. The hydroxy really helps but only for a few months at a time and then we have to tweak the dose, by increasing my dose for a while. Its not ideal I know but allows me to continue with as normal a life as possible. I have always had burning toes, even before my diagnosis, I just didn't realise it was ET to be honest I had never even heard of it until they told me I had it. I don't really get headaches but I do experience visual disturbances and blurred vision. I too hold down a full time job and struggle with fatigue at times which is so inconvenient. I am now starting to accept that I have this condition and I have been having a good run these last few weeks with no symptoms whatsoever. However, this week has been difficult for me to get up and I felt terrible this morning, blurred vision, tired and a spaced out feeling. I made myself go to work but I gave up at about 10.30 am and drove home, it was scary driving on a motorway when you feel like this. Anyway I am not returning back until Monday as I am going to try and rest and see if this passes on its own. By the way I have always found if I take a 75mg aspirin when my toes start it eases the pain. Oh and yes like you, I worry that this is progressing, although I try to ignore it as I don't want to create my own reality.

  • Hi Mallard,

    Many thanks for your detailed e mail. I am sorry you have not felt good today and had to come home to rest. I am on 1500mg a day with aspirin and have been for 9 years. It is really telling on me now and like you have spaced out days unable to concentrate let alone have motivation. I thought it wasnt related but now think it def is. I never dwell on my illness but wish I could win the lottery and not have to battle every day.

    Do you you feel better real soon

    Denise

  • HI

    i am hydroxcarbamide i was put on it when it was found i had a blood clot on my liver it was then i was put on it a few year ago i have to go for a sleep in the afternoon they got my platelets under control and i am still on the hydroxurea

  • Tiredness and fatigue is a constant battle and I really feel sorry for those unlike me who are still trying to hold down a job. I now no longer have to do this but when I think back - because I am now convinced that I have had my condition (PV) for more than ten years, I can empathise entirely. The struggling to wake up in the morning, the complete weakness in my limbs and overall weariness, struggling to work and then struggling to concentrate and even focus my eyes on the computer. You put it down to being "a bit under par" but always feeling that others seem to have so much more stamina and a feeling that you struggle sometimes to keep up. I really think myself that the hydroxycarbamide AND the condition itself cause a bit of a double whammy where fatigue is concerned. I am in a bit of a tiredness trough at the moment and willing it to pass so that I can feel normal again until the next bout. I take an extra 75mg of aspirin every time my toes start to hurt or burn and the relief is almost instantaneous. Consultant will give you advice on this. When I was first diagnosed I had Allopurinol in addition to clear all the debris swimming around in my blood stream which was clogging up the small arteries in my toes etc and this made a massive difference at the time as I had been unable to walk because I could not stand the pain of putting pressure on my big toes.

    Although it is not much consolation when you feel really bad and sometimes it drags on, there is always the feeling that some people have much more debilitation with other conditions and you just try to get on with it and count your blessings.

    It's nice though to have other people who understand to discuss it with and there is always the feeling that even the doctors have to take into consideration the debility that is caused by MPDs and listen to their patients. Those who do not have these disorders cannot understand the impact is has on lives.

  • Hi CrazyDaisy,

    Many thanks for your lovely e mail. It sounds as if you have and are still going through the mill. Like you I sometimes cannot get up in the morning and takes me hours to come round. Yesterday I felt spaced out and my limbs ached for England. Not bad today and have to make the most of my good days.My feet are ok in the day but in bed asleep I wake up to my feet on fire including my skin all over. Its terrible. I do not think my boyfriend understands me at times as my ex husband didnt. They have no idea how I feel and annoys me sometimes that my partner just shrugs it off. My ex husband couldnt care less, especially when I took Interferon for years which was just so so awful. Lovely to chat on here to exchange feelings and emotions and not on my own.

    You take care and hope to chat soon

    Denise x

  • Hi Denise

    My husband has PV and his main symptom whether from hydroxy or condition is the tiredness. He was discharged from the army as was no longer able to do his job. He is my house husband now! Thank goodness we can do that. Money is really tight as get no benefits but we battle on. We are going to the MPD forum in Cardiff today. Am excited to have a day out, burn know he will be exhausted for the next few days. Is there any way you can scale down your business or bring in someone to help? Stress makes my man worse, do you find that? And are your dermatologists sympathetic? Take care. Xxx

  • Hi there,

    Many thanks for your e mail and so sorry your husband has this condition. It must be difficult for both of you. Some days my bones ache for England and very low energy levels. I have scaled down my training as was near on to collapse some days but have to keep going to pay the mortgage and support 2 children. Hope today goes well and be good to get some feeback.

    Best wishes

    Denise xx

  • Hello,

    I also suffer from the heat problem but I have that feeling on top of my foot or on my leg.

    The tiredness comes and goes. Some days I can sleep till just before lunch and some days I feel very normal, as before I became ill.

    Stress is a real killer! I have a partner that forgets and loses keys and all sorts( He is just absent-minded)but that really makes me stressed, and boy, do I feel it! Also work, is stressfull (dental practice) so every night I feel drained. I have noticed that I have become more prone to feel ill, not to actually develop anything really, just the feeling of being ill.

    It is a non predictable illness this, isn't it?

  • Hiya

    Thanks for your e mail. You will have good days and bad days as i do. I seem to pick up the slightest bug as my white cell count is below normal. Generally i can wake up and never feel 100 per cent fit or active. As regards stress. My 2 children are 11 and 14 and find recently that I am snapping at them and just want to be left alone at times. exhausting when been travelling with work then get home and have to start again. You need to keep your immunity well balanced with lots of vit c. Chemo can drop your white cells alond with red blood cells. Last year my Consultant pushed my chemo up but made me anaemic. I felt shocking. Back on 1500mg a day now and just borderline.

    I hope you feel better soon and nice to know we can exchange views and comments on here

    Best wishes

    Denise

  • Hi Denmoor,you've hit the nail on the head! I was on Hydrea for 10years and can relate to all you have said. I am now taking anagarlide and although the fatigue is still an issue it is not as bad as when on Hydrea. I could not get any other medication other than Hu as I have the wrong post code so I asked for a second opinion in London which has opened up a whole host of possibilitys.Have you considered a change of medication?

  • Hi

    Thanks for the reply and glad you have come to a resolve. I have tried Anagrelide for 6 months and gave me terrible palpitations so chemo is a last resort for me. I was even wired up to the CCU at the local hospital to monitor my heart. That was scary and never again. Just have to deal with the fatigue and lets hope I live till I am 100!

    All the very best

    Denise

  • Thanks for the reply and glad you have come to a resolve. I have tried Anagrelide for 6 months and gave me terrible palpitations so chemo is a last resort for me. I was even wired up to the CCU at the local hospital to monitor my heart. That was scary and never again. Just have to deal with the fatigue and lets hope I live till I am 100!

    All the very best

    Denise

  • Hello, I thought that Hydroxycarbamide was the medication with the least side effects, is it not so?

    I guess it is different from person to person..

    My doctor never really discussed medication when I was new to it (2007).

    But, I think I have mentioned before, it seems like I have more side effects from the medication than the actual illness!

    I have been well and healthy all my life, always on the go, and now I am like a sloth...

    Not really me at all. I don't sleep very well at all. Very unsettled in my attempts to sleep.

    Really, I don't like to complain but I guess that I can a bit here, You all will know what I am going on about.

    :-))

  • Reading all your comments I really feel the hydroxy could be to blame for the tiredness. I have had PV for 7 years. My Platelets are normally around 600 to 700 unless I have an infection/cold when they rise, my red blood count is normally around11 to 12. I take clopedigral daily and have occasional venesections. I work full time, am out of bed by 6.30 am and walk 25 minutes to and from work each day, and have 5 grandchildren so my weekends are busy as well. I have resisted the Hydroxy so far but my consultant has said we will discuss it agin when I am 60, 2 years away. Of course I would rather take it than have a stroke, but I feel I am doing the right thing by resisting it for the moment. Really wish I could have got to the Cardiff Forum. Best wishes to everyone.

  • Cardiff forum was fantastic guys. Feel so much more positive now. And we are going to push for a transfer to a specialist in MPD not just a haematologist. Think a specialist would have tried hubby on something other than hydroxy by now. I advise any one to get to a forum if you can.

  • Hiya,

    Thank you so much for taking the time to reply. Sounds very positive that there could be an alternative to hydroxy. I am seeing my Consultant in 2 weeks and shall push for a further review xx

  • Hey there, Just wonder about this tiredness...

    I can get very very tired very very quickly. Instant.It doesn't happen every day of so, but sometimes I just feel like falling asleep, sitting up. I have resisted to actually lay down and sleep as I suspect that I won't fall asleep when the night comes, if I did that. Must add, that I have never in my life been able to lay down in the middle of the day, unless being ill.

    Also, I have never been able to sleep in a car. Now, I just fall asleep and sleep like a baby!

    Still...if something wakes me up in the middle of the night, I stay awake for 3-4 hours after that.

    How sad am I?

    Denmoor, by saying that there might be an alternative to Hydroxycarbamide, do you mean some medication?

    I am taking

    Clopidogrel

    Propranolol

    Omeprazole and

    Hydroxycarbamide.

    It looks like some sideeffects are the same between them so no wonder I do have sideeffects.

    The hospital where I am going don't have a specialist in MPD, I have to settle for an general Haematologist.

    I have E.T.

  • Hi Swede

    I reckon that with your. Condition along with taking chemo then that is probably why you are so tired. A major side effect is fatigue and I have woke today still tired with little energy. I am afraid that maybe you will have to adjust your lifestyle accordingly and hope that you rest when your body is telling ou too

    All the best wishes

    Denise

  • Thanks Denmoore, I think you are spot on. The medication and the rest is the problem.

    I am just home from a daytrip to Anglesey! (scubadiving trip) So, not rest but still rest, if you get my drift...

    Now, I am tired for the right reasons! Having been outside, in the fresh air, for 9 hours plus the car trip.

    The 'other' tiredness is not just tiredness, it is some sort of...half unconsciousness really.

    So. will have a glass of red with my late dinner and just enjoy to be tired!

    Just a sort of real joke...I woke up yesterday morning and realised that I must have totally run out of ideas for my dreams.I must have used them all as I dreamt of a recycling centre!!!!!!!!!!!! ;-))

  • Hi again,

    Yes some days I have 'spaced out days' like you and just not on this planet. It is rather weird and strange to explain. I hope you enjoyed your wine as I too enjoy my Pinot grigio but do not drink as much now as makes me feel even crabbier in the morning!

    Hope to chat soon

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