Does anyone else here suffer from breathlessness? I often feel breathless and don't know if it's the ET, enlarged spleen, or the meds (hydroxicarbomide and aspirin) . I also have an underactive thyroid gland which I take levothyroxine for, and I take omoprazole to prevent the acid reflux I get, so maybe it could one of those?
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I too get very breathless when I walk up any inclines I have to stop a lot to get my breath back, also my muscles feel very weak and legs very heavy.have mentioned this to my GP and Heamo but they make no comment, So assume its part and parcel of the condition.
I'm on aspirin and Hydroxy also.
Sorry this is of no help to you, do not know if this is related to the meds or the ET .Regards Sandy.
I felt like this last year when my iron stores were severely depleted and my thyroid had become more underactive. It took a course of iron and some tweaking of my thyroxin to sort it out. (Under the supervision of a doctor! Don't start mucking about with your levothyroxine yourself!) I also take omeprazole and blame it in part for what happened last year.
It's a while since I was breathless, but I live in hope of Daniel Craig knocking on the door and changing that!!
That made me laugh lizzziep - I would like that type of breathlessness too.....
Hmm dripping wet in those sky blue trunks lizzziep? ? Would leave you shaken and stirred 😆 xx
Hi, Have also felt pretty breathless at times, especially going up a hill, yet am v fit, walk and swim a lot, so thought it odd.....but now makes me wonder if it is part of ET. At present, not on Hydroxy or anything except aspirin, but, looking back, it was worse when I was on something. Tinkerbell13
Hi janwh, can't be very nice for you, I would mention this to your haematologist or GP. Maz
Me too, I have ET jak+ on aspirin and hydroxy, its worse now than it was when first diagnosed!!!
Hello, I have PV and have frequently suffered from breathless but I understand for me it was due to being helped to have low HGB. I have taken omeprazole at times and it hasn't made any difference to breathlessness. How are your red counts? With ET I don't know. Best to ask your hem, I think. Hope you soon feel fitter.
Hi, I have ET on aspirin and hydroxy too and do get bit breathless sometimes. However I also have underactive thyroid, taking Levothyroxine for it like you. Sometimes I don't know what causes some of my symptoms the ET, the thyroid the drugs or what. If the symptoms persist and it's worrying me or anything I just check with my GP and if necessary he does an extra blood test for me to try and work out what it is. I do sometimes think it is the thyroid rather than the ET as my platelets have been pretty well controlled but some of the symptoms or contra indications of both drugs are the same! Take care hope you feel better soon. Liz xx
I have ET, Calr positive on aspirin 75ml and Hydrea 2000ml each day. I too have problems with breathlessness and muscle weakness I'm fit and walk a lot but yet if I have to climb a little hill or the stairs I'm breathless and my muscles are so weak. I have terrible aches and pains most days at my last appointment in September my Haematologist ran some additional blood tests should get the results in December. I also suffer terrible from restless legs most nights it seems to be getting worse and my quality of life is suffering and I'm not sure we get listened too. I do work long hours but sometimes its a struggle to keep going but how can you explain your condition without appearing like a big moan.
I do think the breathlessness is part of the ET as I do not have any other medical conditions.
Hi irishmod.
Your symptoms sound so similar to mine. I too suffered from restless legs in bed.....don't like that I need my sleep...I have posted before the fact that since I have been taking magnesium my restless legs don't make me lose sleep any more. Please do Google Magnesium and read the effects of lack of this important mineral....but PLEASE check with your doctor before taking it.
Best wishes Sandy.
Oh your symptoms are so like mine - shortness of breath, restless legs at night time etc. I, too, have E.T. JAK negative, CAL positive. I am on varying amounts of Hydrea according to my platelet levels and aspirin.
Thanks for the advice yes I have heard about the magnesium and have been taking magnesium for the last few months but it has not helped, I also got my doctor to check for magnesium level in my blood and it was normal. I wish it had helped!
Thanks again really appreciate your reply,
Could it be the physical shape of the RBC's? When the factory overloads production, sometimes the product is not quite up to regulation. In other words, if the design does not carry the maximum amount of oxygen, the body doesn't get served and the lungs have to work harder.
It's not nice, and can be really frightening. I know, as I have it too, mostly when I'm laying down though.
I've had numerous lung function tests and X-rays they've all come back fine and clear. So my GP and haematologist can only say that it's a symptom of PV.
I'm not on any meds for my PRV except for Aspirin and take lansoprazole.
I have PVR Jak2 pos and on Hydroxy and aspirin; have terrible breathlessness and when I take the dog for a walk in the morning I almost encourage her to stop and smell every blade of grass so I can rest and catch my breath! Nice to know I'm not alone, GP doesn't seem too concerned about it. All the best, Sandra
I am often breathless,have PV,lungs ,chest clear.....I carry on if walking dogs or whatever,doesn't get worse or better! Head spins tho and legs get tired.
On Hydrea,Plavix,Isoptine,Omeprazol.....If I rest for a couple of hours,I wake up breathless,think it is just the P V ,and of course all the Meds must affect us one way or another,Best to you all.
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