Anita Stewart.

[Anita53]

Hi all. I am 69 and have had ET and then P V for 13 years. I have been on hydroxy 50 my per day for nearly 2 years. My blood counts are fine and I haven't needed phlebotomy for 18 months. My problem is that I get very breathless after walking a few yards. I have had a chest x ray which was clear an electrocardiogram and an echo cardiovascular which showed my heart to be strong and healthy. My consultant says he has never met anybody else with my condition who complains of breathlessness. Any answers out there!?

[jane13]

i get this but only occasionally - have pv now myelofibrosis. my haem also thinks nothing to do with him but a) have read that u get this with low platelets - don't know why - and this would apply to me b) a previous consultant told me that MPNs lead to the production of an adnormal distribution of some cell types - e.g. smaller sticky platelets, or an abnormal size distribution of reds and that this can effect how they do their job like maybe how much O2 they can carry.

but " i don't know" is the short answer - good luck finding out

[MPort in reply to jane13]

Hi Anita,

It could be connected with a lung condition. I remember reading about breathlessness and MPNS but can't remember the details. You might be able to investigate this if only to eliminate it.

[Karol_Rua]

Hi there, have you been checked for iron deficiency anaemia? As you say your blood counts are 'fine', you obviously don't have an elevated red blood cell count. For some reason not entirely understood, we MPN people tend to be susceptible to anaemia, which can cause severe (and embarrassing when you're 41!) breathlessness and palpitations. There is a fine line between having too much iron but too little isn't fun when you try to do simple exercise and flights of stairs. Definitely speak to your haematologist as a GP might not understand the consequences of prescribing (too much) iron if you are found to be anaemic.

Good luck! K

[Stevesmum42]

Hi Yes I too get breathless especially on hills or stairs, just a few minutes ago before logging in here I had to walk up a fairly mild hill , and I am just getting my breath back. (ET on 2 Hydroxy daily), Heamo doesn't give me any explanation. So sorry no answer to you apart from saying it appears to be shared by many of us.

Keep well Regards Sandy.

[teenia in reply to Stevesmum42]

I have same symptom on slight hills and stairs and then breathing goes bac to normal. Some times just getting up and own qwick will do this also .Thanks for your imput .food for thought will ck with hemotolagist in june appt.

[Hidden]

I have ET and get breathless but I also have Sideroblastic Anemia and my Heam feels this is responsible for the breathlessness. I take anagrelide 4 times daily as the HU made the anemia worse for me.

[linds]

Hello.

I have PV and also MF and am anaemic,

Makes walking far difficult to say the least but funny enough I can do stairs. I do deep breathing exercises when I stop which helps a little but it is such a nuisance. Hope you get on top of things.

[teenia]

hi anita , I also have ET and am on hydrox 500,3x day. I also have been stugling with shortness of breath,and have run all the meantioned test.

[Aime]

Hi Guys I have PV but overweight too so I put breathlessness issues down to that. Now I am wondering if this is the cause.xxAime 😺

[skodaguy]

Do you have a dry cough? I had PV,now progressed and was put on hydroxyurea/hydroxycarbamide. Over 3 weeks I developed a progessive dry cough and shortness of breath with exertion. Knew i had got pneumonititis as a side effect, stopped taking the drug and it subsided over the same time. Consequently saw a Prof of haematology in Sheffield who said he knew it happened but had never seen it. Only cure is to stop taking it.

Now i go out on a limb. MPN's are slow cancers but drugs can act fast so if you can't see your doctor for a while you may want to consider doing what I did and just stopping it. A week off is unlikely to affect your life expectancy but could well improve your quality of life.

Please accept I talk as an informed member of this group but not as a Dr in any capacity since my retirement.

[Kerri2]

I also has this. Dr felt this symptom should have abated with HU and refered me for all the same tests -normal. Then after my next draw he cut my dosage in half I did experience relief from shortness and daily headaches. My platelets are slowly rising which I feel is confirmed by the increase in headaches. I just went from monthly draws to every 3 mos, so still have another mo to wait.

[Inca]

I am very breathless at the moment,6weeks ago my blood tests were excellent,my consultant delighted.Blood last week ,H C T risen to 49,Plaquettaire(platelets)dropped way below normal....have had Laryngitis in between times and bad allergy ,hay fever like,do not normally suffer that.So new tests next week to see what is going on.Normally I am as active as possible,still work as sculptor,have my horses and two G S D,dogs.Ihave the usual fatigue we endure,the breathing problem tho,is not good.I am 76 ,so don't expect to run like Mo Farrow.....no signs of any lung or chest infections.....So why I wonder.Keep well everybody .

[Mazcd Partner MPNVoice]

Hello Anita, sorry to hear that you are experiencing this breathlessness, one of the rare side effects of Hydroxycarbamide is : lung reactions consisting of abnormal substances in the lungs, fever and breathlessness and inflammation of the air sacs in the lungs. It would be a good idea to speak to your consultant again and just check to see if it is the Hydroxycarbamide causing the problem. Best wishes, Maz

[Anita53 in reply to Mazcd]

Thanks for replying to my email. I have read about that on the hydroxy leaflet. I have no other of the symptoms but I will have a word with my consultant. I'm wondering if it could be anaemia as my ferritin level is only 13 even though my reds are fine. Love your hair by the way! Luv Anita.