I was diagnosed 3 years ago and have suffered with frustration of little or no information or support from my haemotologist who I use to see every 4 months but since covif via phone .my question is for the past 9 months as soon as I lie down to go to bed my feet pains all night and I have not slept unless I take strong pain killers which makes me feel like a zombie . I have seen my GP and a foot clinic and they don't know . I have read on the internet it could be side effect of the 3 yes of 1500mg of hydroxycarbomide which affects the nerves. I have mentioned this to my haem. who said it's too risky to changey meds . Does anyone have similar side effects and how they managed it
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Jahill
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There are a number of things that the foot pains could be. Some of us do experience leg/foot cramping as a function of the MPN. If what you are describing is peripheral neuropathy, that is one of the serious adverse reactions to hydroxycarbamide. It may be that you need a dose reduction or to change to another medication. Unless you have a history of thrombosis/microvascular events, not sure why it would be too risky to change your meds. Suggest getting second opinion on this from a MPN specialist. This is a list of docs with the requisite expertise mpnforum.com/list-hem./ .
Sounds like what you were describing is Restless Leg Syndrome (RLS), and it might be an unfortunate complication of having to continually take toxic drugs to manage our MPN condition(s)...
However, and having said that, I can recall having had RLS for quite some time before I was ever diagnosed, hence, it may just be one of those side-effects we MPNers must learn to live with, unfortunately.
If you are not seeing an MPN Specialist, expecting your Haem' to really understand you and your MPN, (might be a fruitless exercise), like Hunter has already suggested below, I would try to find myself a better person who might also be able to suggest some better options in Med's too...
What a silly thing to say (that change of preps are risky) !!
On most University hospitals docs will want to change all of the time, in fact they are rather possessed with changing.
All preps are the same, in the end. They kill blood platelets. But maybe your hospital is under-funded, so he lie in order not to lose face. Who knows.
OK-- your painful feet : That can most often be solved !! 1st you have to work the vene pump effektively. If you lie on your back you can grip your footlink ( the leg right over your foot and squeeze it tightly and at the same time move your hands towards your knee (like trying to pull up very unwilling nylons -lol.
You have to do this movement 20 times on each leg at least once every day.
The pain is caused by lazy blood circulation. Many very old people are the same.
It is also a very good idea to take a rest/nap with your legs up against a wall.
It is exactly the same thing which happens to people who are about to faint : You make them sit down with their head between their knees, which means that their heart is in a higher position and their blood will run easier to their heads. No witchcraft at all
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