Found the courage to post!

Hi everyone!

I have been following this forum for a year now but have only just plucked up the courage to post a comment.

I was diagnosed with ET, CALR positive in Jan 2016 when I was 47 and it appears that my platelets had been steadily rising since 2011. I am not in the high risk category but because I was symptomatic with chronic headaches the haematologist put me on aspirin and Hydroxycarbamide. I am currently on 1000g a day and my platelets are now stable around 370 with no more debilitating headaches! This forum has been great in helping me understand my illness but also in getting me through the bad days. I was previously a healthy person who took no tablets and I found it quite hard at first to get my head round the fact that this illness was here to stay and I would need to adjust to living with it. Your posts have helped with this a lot so a BIG THANK YOU to you all.

My question is regarding low white cell counts which I have on the HU - I constantly feel very fatigued and pick up all viruses going which will leave me feeling wiped out for days. Anyone have any tips for this?

Many thanks in advance

Michaela

10 Replies

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  • Hello Michael,

    Although unable to reply to your specific question, glad to see you 'plucked up the courage to post '.

    As you'll see this is a very diverse and supportive forum and I'm pretty sure you'll receive plenty of replies soon.

    Take care of yourself.

    Gary

  • Promise I wrote Michaela but I got 'corrected'

  • Hello Michaela, how nice to meet you. I have MF so different symptoms from you but I do share the fatigue bit and in truth I have not been able to crack it however much I try so I push myself so far and then give in. Sometimes I sleep a full twelve hours and then other days have bursts of energy that remind me of my old self. I am 69 by the way and up until five years ago only took a pill for high blood pressure!

    Having a compromised immune system makes all of us with these conditions vulnerable to infections. My biggest tip is that I have become a fanatical hand washer and try never to touch my face when I am out anywhere. I do travel to London on many occasions and dread it when anyone sneezes on the train. I am known to take a breath and move away from them if possible, hoping not to breath their air. This winter I have only had one bad infection - that wretched cough that lasted for weeks, so maybe something is working. If I know someone I will be seeing is really unwell with shingles for instance, then I cancel the date for another time.

    I do think eating lots of vegetables and fruit plus the regular water intakes are valuable too.

    The other tip is to always use a straw when drinking in a pub/restaurant - glasses are a notorious way of picking up germs. If it looks strange well I don't care as my health is valuable. I do agree that a man drinking a pint of beer would not like to do this though. Ha, Ha!

    Also, when travelling on a plane, a little vaseline around one's nose can trap germs (so I understand).

    Well hope this was not too long but my sympathies are with you and I wish you all the best.

    Linda x

  • Hello Michaela, so pleased you have plucked up the courage to start posting and interacting with the lovely people on this forum. With regards to the fatigue, it might sound odd but when you are feeling fatigued the best thing to do if you can, is some sort of exercise, just gentle, you don't have to go to the gym, but even if you go out for a walk this can help, and keep well hydrated, this helps as well, but there are some days when nothing works and you just have to give in to it, I myself have ET and am on Hydroxycarbamide so know how you are feeling, and some days I feel like my whole body is made of lead. With regards to infections you will be prone because of the Hydroxycarbamide, all you can do I'm afraid is to be careful when around anyone with a cold or whatever and if someone sneezes on you, tell them off. Best wishes, Maz

  • Many thanks for your lovely replies - I think you are right- gentle exercise and being careful around possible germs! Some good tips from Linda - I'll put those into practice too. It's so good to have people who understand 😊 xx

  • Welcome Michaela and ten out of ten for posting. I had MF and a stem cell transplant and had to avoid infection after that as I had the immune system of a baby. Friends and family knew that if they had colds/infections or knew someone who did 😀 then stay away from me! Six years in, with a slightly improved immune system, I am still wary and careful. Maz is spot on about exercise, even a short walk and fresh air can give you a boost.

    Now you have joined the conversation ask away as often the answers to questions asked by one member help another.

    Chris

  • Hi Michaela. Welcome to our forum. I am taking interferon so not much help to you. My heam would like me to start hydroxy, because I have such low ferritin levels but I don't think it will make me any less fatigued and from these posts, it seems like you get a lot more infections. I have my young grand children on a regular basis and seem not to pick up their colds, I'm loathed to change things. I wish you well. Mel x

  • Hi Mel, I don't know anything about interferon but when I read the posts on this forum it seems that people have differing experiences with hydroxy. Some don't seem to suffer too many side effects at all. I would say from my own experience that my body has adjusted to the medication over time and for me it is just the low white cell count that causes me problems, my iron levels have stayed in the normal range. Fatigue seems to be an issue for most people with an MPN regardless of what meds they are on so it may be worth giving hydroxy a try... I haven't got Grandchildren yet but my mum says that it is the best thing ever!

    All the best, Michaela

  • Welcome Michaela, I can address the infections part of your post. I have had a separate immune system deficiency disease that began prior to my ET. I've cut down the amount of infections I catch by carrying hand sanitizer wipes with me and using them whenever I'm out. I also never touch my eyes, nose or mouth until I've returned home and thoroughly washed my hands. If someone coughs or sneezes I cover my nose with my sleeve and move away if possible or keep my nose covered until a few minutes pass. And I wear face masks (the flexible type like you see surgeons wear) anytime I fly or if I'm in the emergency room of a hospital or walk-in clinic. I get the really thin light weight ones. I know it may sound extreme but it keeps me healthier and reduces the times I have to get on steroids for lung infections. Finally, in case you didn't see the earlier posts about skin infections, clean and treat all cuts right away and keep an eye on them so you don't get infections. I'm glad you've joined into our discussions. Katie

  • Thanks for all you replies - have any of you had any success with taking supplements to boost your immune system.

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