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
How lovely to hear from you! We struggle on. My haemoglobin is 9.9, my haematocrit has dropped to 31, so I guess I'm a bit anaemic. I am not having treatment for that and I continue on Jakavi, 10+5mg daily. I am taking a diuretic, recently upped the dose, and beta blocker for heart arrhythmia, which has helped a bit with the breathlessness, but I have an urge to sleep in the afternoons which I fight as best I can. The balance issues aren't awful, but I walk with two sticks, Nordic-like but slowly!
My haematologist warns me every time I see her about possible progression to AML, of which I am aware, but if it happens, so be it! There is no remedy. I consider myself lucky to have survived 14 years already with this disease and at the age of 82 I am doing fairly well. Yes, it is frustrating to be slowing down so much, but I try to enjoy each day. I am applying for French citizenship but am unsure if I will live long enough to acquire it, it takes a long time.
We still have our little spaniel who is a delight, but my husband mainly does the dog walking and I go as far as I am able.
I am sorry I have been slow to reply. I wish you all the very best. I think the only thing we can do is count our blessings and pace ourselves. Cecilia x ☺️😊
Delighted to hear from you Cecilia & to know you are still chugging on like me determined but slower.,our H C T & H G are in the same range & I need Nordic hiking sticks to walk our G S Ds.Hubby gets them further than I do,one now is just I yr old & we are busy training him ,I get breathless still,I have a stent which was fitted when I began with P V 14 yrs ago ,so cardio man checks that & consultant the M F .The injections seem to help my platelets are going up,not much but better than before.
So yes I think all considered we are doing well to keep going .I do need to rest a couple of hours in the afternoon,I fight it but after a few hours in my studio I really need to.I. listen to the radio or my audio kindle ,dose a bit,hot days knock me out not that we have had many so far. What is A M L? I tried to google it & got money laundering ! Is it a Leukeamia I am guessing!
Keep going well,I still have Jakavi as well,seems to be ok at this point in time.Very very best to you,
We just have residency,as you say will we need to be Fr Nationals the time & effort?🥰 Sally
AML is acute myeloid leukaemia and I know that a proportion of those with myelofibrosis progress to this. My haematologist keeps warning me about it, but as there is nothing to be done and it just speeds up progression I don't know why she bothers, there is no cure or effective treatment. What are GS and DS? I guess dogs?? I use Nordic walking sticks too and am a bit lost without them. Hot weather to be avoided, better inside with air con if necessary. I like audio books too, but sometimes miss bits when I doze! I am so SLOW getting up in the morning, but at least I do sleep.
Hi Cecilia,G S D is German Shepherd Dogs ,Berger aAllemande here.We have always had the breed fabulous faithful guards& devoted only to their own people.I did guess eventually
sorry lost my concentration & pad slipped.I did guess that it was Leukeamia,I did have a Bone Marrow Biopsy for it several years ago,since then I have had more of those the last one showing M F .As you say what can we do about it….maybe it will not happen hopefully.First really hot day & yes I cannot cope ,have to get outside early morn or evening,knocked out totally this afternoon as hubby hasn’t got AC going yet.No doubt we will be back to rain in a few days !!So pleased to chat to you,as we are keeping going in spite of old age!!In my head I am 24 not 84,Only way to manage the depressing blood problems we have.Very Best to you keep going with the hiking sticks,they do exercise the arms as well I think ,so they are a good over all to keep reasonably fit!!🤸♀️Pity we are hours away could discuss the whole thing over an apéro or coffee
Hello Lucieboo - I'm so glad to read your post. My other half was diagnosed with myelofibrosis just last week, he has been J2 negative essential thrombocythaemia since 2009. His consultant is going to monitor him before treating him so, for the moment, he will continue to take hydroxycarbamide and aspirin. On the whole he is an extremely fit 81-year-old but ...... For the last couple of years, he has complained of feeling wobbly and not quite able to balance sometime. He adamantly refuses to tell his GP or even his consultant - so it was with some relief that I read your post this morning, and now I'm reading the other responses to you and feel rest assured that this feeling seem to be quite common with this disease. I will take this opportunity to wish you well with your treatment.
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Myelofibrosis
