I was diagnosed in April with reasonably high levels...I have had Venesections almost every week since ... My levels are not improving too much... I am getting so exhausted & itching, does anyone else suffer from the "brick wall" exhaustion?
Any ideas what I should do !!
Hi Sue, sorry to hear of your diagnosis but a big welcome to this forum where you will get excellent support from lovely people who are fellow sufferers and really understand what you and your family are going through.
The MPN Voice website is an excellent source of trustworthy information and Maz our editor monitors the forum and can also provide with a buddy for one to one support.
At the moment, you will see the list on the MPN Voice website, there are forums taking place up and down the uk which are really worthwhile attending- I was assuming you live in the U.K.?
The fatigue is the symptom which the majority of us struggle with. Plenty of fluids, fruit and veg, energy foods like nuts and pasta help but sometimes you have to listen to your body and rest. At some stages exercise does help if you can drag yourself to do it but find something you enjoy doing.
Itching can be helped by plenty fluids again - 2 litres a day at least (which I think does include water and juice from fruit and veg. I'm on antihistamines both from my GP and haematologist, they definitely help. I also find Aveeno moisturiser helps and recently started using Olay Quench (which I got through Amazon) and it helps too.
Take care, keep in touch. I'm sure you will get more answers to your post shortly. We're all here to help and support one another. Kindest regards Aime xx😺😺
Hi Sue, if venesections are not reducing your levels effectively then there are other treatments available. I also have PV with very high platelets so venesections would not work for me as they would push the platelets even higher. I started interferon injections 22 months ago and they have normalised all my levels: it has been a life saver for me! Others have had good results on HU or on Ruxolitinib. I suggest discussing alternative treatments with your haemo. Good luck! Susana x
Hi Sue, sorry to hear that you are having problems with the itch, I can see that you have had some great replies, you can also have a look at this information on our website which might help you
mpnvoice.org.uk/living-with...
with regards to the fatigue, it can be very debilitating, one of the best things you can do is exercise, I know that some days when you feel you can't get off the sofa the last thing you want to do is any exercise, but it does help, going out for a walk can make you feel better, or if you can't get out then do something inside, like dancing around the kitchen, just something to get yourself moving around. Best wishes, Maz
Hi Sue
Sorry to hear that you are having a bad time. You have not mentioned whether you have started medication since your quite recent diagnosis. I feel coming to terms with being told you have a life long health condition is in itself exhausting. Maz has given you sound advice. Also, be gentle with yourself as a change in health is a real shock sometimes necessitating a lifestyle change.
Like you, I also have PV JAK2+ and had weekly venesections. By degrees the frequency became less and is now every eight weeks. I found the "itchies" a real bug bear and have tried many different creams. I turn the temperature right down in the shower. I have stopped using shower creams. Instead I "soap" myself with aqueous cream. I use E45 Itch Relief cream as a body lotion and find it really good. It is expensive and comes in a 500g pump action bottle.
Warm wishes and a hope things improve for you. xxx
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