I have been taking Jakavi for three years after diagnosis of post-PV myelofibrosis. I get very breathless and can't walk far, but seem to cope reasonably with other activities given my age (coming up 82). I had a fall last year when my balance went quite suddenly and I passed out briefly: no signs of a stroke on the scan. It hasn't happened since but I often feel that my sense of balance is not good and I feel light-headed. I am trying to lose some of the weight I put on with Jakavi, with some success, so it could be low blood sugar. Anyone else experiencing this? Thanks.
Lucieboo.
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lucieboo
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This is certainly something your GP should be consulted about. Have you been tested for postural hypotension i.e. blood pressure changes from sitting to standing? I'm in a similar position to you, taking Jakavi for post ET MF and also have extreme breathlessness and balance issues. I was tested for blood pressure issues which in my case were negative but my problems seem to be caused by inner ear crystals shifting - both these problems seem to be quite common as we age. I've had a procedure called the Epley Manoeuvre plus a lot of physio both of which have helped my vertigo issues and balance but I walk with care and brought things down from high cupboards in the house to avoid going up steps. GP also said to keep off caffeine, alcohol and drink plenty of water. I miss my daily strong cup of coffee!
i’ve been suffering with post ET MF since 2019. Your symptoms are extremely common among people with our condition. There are times I can’t even stand up for more than a few minutes without becoming short of breath. Usually it’s when my hemoglobin is low, so you might want take a look at that next time you get bloodwork.
Breathlessness is certainly a particular nuisance to us. Mine feels like when my haemaglobin was down to about 7 and I needed a transfusions. Now I'm on EPO injections it keeps the figures better but not the breathlessness. Lungs, heart and low B12 have all been checked - doesn't seem to be anything left to check. I don't think it helps the balance issues either.
I’m on EPO injections too. The breathlessness and balance issues are always there. Some days are worse than others. I also have been told I have an enlarged heart and fluid around the heart. I’ve read research articles that said that people with MF have a high incidence of heart issues. I’m glad you’re ok in that regard.
After two heart echos two problems showed up and I thought at last some explanation for the breathlessness. However my haematologist sent the results to a cardiologist who reported back that in medical terms they were 'trivial'. Like you some days are worse than others and I've just had to use coping strategies and carefully plan my day. You no doubt do the same. I used to be so active so it is very frustrating.
I was interested reading your post as I have been on Jakavi , ruxolitinib for a few years.
Six months ago I got an ulcers on my ankles which have only just cleared up... thankfully. Prolonged due to drugs I believe. Now I am stuggling to get on moving again finding myself v. fatigued and stiff which I had put down to the decrease in mobility due to being bandaged from knee to toe.
I will consult both my GP and Consultant high lighting the issues. Thanks
Hi Lucieboo,I have been wondering how you were getting on.Like you I am MF now & experiencing exactly the same balance & breathlessness. Also had a few nearly ‘passing out’ & desperately tired all day times.So depressing when you are used to walking with dogs etc & losing breath by the time you leave the house.I am having injections to boost the red blood cells which obviously are low,just above the 9 I think they go by here in France. I was so pleased to see your post& know you are still chugging on.Keep as positive as you can,there are new meds that we can take my consultant tells me,if the injections don’t help
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Myelofibrosis
