Breathlessness and Hydroxyurea

[lucieboo]

I have been on Hydroxyurea for PV for 3 years or so, and have now developed marked breathlessness which is beginning to get problematic. I am having cardiac investigation 24-hr holter), but just read Maz's response from some months ago about side-effects on the lungs from Hydrea: sounds like me! What kind of tests are needed for this condition to be diagnosed? I know my haematologist will want me to stay on Hydrea as it is controlling my blood counts well, but quality of life is definitely deteriorating.

[Mazcd Partner MPNVoice]

Hi Lucieboo, I am sorry to hear that you are having this problem and that it is affecting your quality of life, that is not good. A common side effect from Hydroxycarbamide is that it can reduce the red blood cells to drop too low (anaemia) and you may notice that you are becoming breathless and tire easily. A rare side effect is lung reactions consisting of abnormal substances in the lungs, fever and breathlessness and inflammation of the air sacs in the lungs. You say you are having a 24hr cardiac monitor, once the results are back from that test your GP will either have an answer for you or will have to carry out further tests but exactly what they would be is difficult to say, your GP will be able to give you more information on his/her intentions for further tests. Hope you get it all sorted out soon and start to feel better. Best wishes, Maz

[lucieboo in reply to Mazcd]

Hello Maz

Thank you for your reply. I do not think it is lung inflammation. I had several replies from people with similar symptoms and for them also the breathlessness is being looked at as a heart or pulmonary problem. I rather think it is neither, probably something to do with the blood or Hydrea, but why is it never mentioned by consultant haematologists, and dismissed as 'some other problem'? There is a reason for everything.....it needs serious investigation. I have suffered this before, and it has gone away. This is my most severe episode, but today I felt better and was able to do a decent walk. I just cannot figure it out. I would dearly love to know what to do when this occurs: push myself to do more? or ride it out, relax, take it easy? Could it be something like the mast cell/pruritis/histamine reaction? The frequent stomach problems tend to be blamed on Aspirin, but this is also likely to be part of the histamine reaction (I have this also!). Or maybe something else entirely! Definitely linked with fatigue..but if you can't get your breath?

[Digger031145 in reply to lucieboo]

Did you get to the bottom of your breathlessness? Was it down to Hydroxycarbamide?

[lucieboo in reply to Digger031145]

There is no way to know. It could just be the PV (now myelofibrosis). My lungs are fine, oxygen saturation fine....But many people with PV are the same, just like the itching......I have good days when I feel fine, but I am old now (79) so it is quite likely I will suffer the normal old-age things plus the blood cancer. I try to keep active, walking and exercises every day, best I can do.

[Digger031145 in reply to lucieboo]

Good on you . Hope the exercises help you

[Inca]

I am also having breathlessness,I have had well controlled asthma for years,but it is not the same as that.My G P cannot detect any abnormality and I have had X Ray's,Lungs are clear,Mine is at the same time as severe fatigue,and like you is affecting almost everything I try to do.Next week having tests for the whole works....my reds are high,51 and Plaquetaire below the normal,I have P V and until recently managed fairly well over 7years,with the odd blip...this moment I am feeling the worst ever since he beginningMy Hydrea has been increased to 3 / 2 /3/2alternate days for 4 months now,I am sure this is the problem....see consultant,April,or before if the tests throw up a problem.Sincerely hope you get to the bottom of the breathlessness,it is so distressing and hard to cope with,Very best to you.

[Mardi in reply to Inca]

I am also asthmatic controlled but agree the breathlessness I got before treatment was diffent to asthma. It went away when I went on hydrea.

[Digger031145 in reply to Inca]

Did you get the the bottom of your breathlessness

[Nicky57]

Hi,

That's interesting. I have also been noticing breathlessness. I have PV Dx 2009 and have been on HU since then, originally I took a capsule made by Squibb (?) they were pink and blue but now I take it in a plain white capsule, l'm not sure who makes it but I've only noticed breathlessness since changing. I wonder if that is significant?

Bloods are fairly stable, echocardiogram was normal, I'm waiting for a further appointment with local consultant to discuss CT results.

All the best

Nicky

[Hidden in reply to Nicky57]

Nicky57

Ditto. my too. It can be a problem when you have to stop half way through a sentence or activity. I too have mentioned it a number of times to my GP and Specialist but they brush it off. I feel like they don't listen to me.

Anna

57 HU 500mg daily Aspirin. After two years of HU I am yet to reach levels in the normal range 150 -450 in Australia. With Hydrea I average mid to high 600s.

[lucieboo in reply to Hidden]

Hello Anna Garcia

Did you see Maz's response? I think this problem is very common with the disease. Your GP can't help you as I believe there is no solution. My problems come and go, worse in winter and in hot weather. I am staying inside mostly with the heat wave and just going slow, reading, listening to audio books...If you take Hydrea you must stay out of the sun. I am taking 1500mg Hydrea daily (3 tablets) and the haematocrit is well under control, the dose may be a bit high as my platelets have dropped rather dramatically. If Hydrea isn't getting your haematocrit to normal levels you probably should be having phlebotomies: talk to your haematologist. When mine was reduced too slowly (on first diagnosis, in Spain) I had a heart attack, because my blood was really thick, so beware! My French haematologist insists my haematocrit must be below 45% and I have a bleed if it goes above, I think it is good advice.

Good luck, and don't lose hope, as I say I have ups and downs in terms of activity level, but keep cheerful, and I am sure that helps.

[jillydabrat]

Hi luv, I am going through exactly the same thing. I was in the shower yesterday and I just could not get my breath and had to sit on the edge of the bed until I could breath more easy. I have mild asthma but this was not a asthma attack. I have reported this to my haemotologist before and she did tell me that hydroxy can cause smell clots in the lungs and problems with the heart so I am off today for a chest x-ray first and a cardiac echo on Friday. Even now, just sitting in my chair I can feel the extra effort in breathing. My haemotologist told me that I can be changed to ruoxolitnib if needed. Like your husband, it's affecting my life now as well, really limiting what I can do but I am not letting it stop me, in fact I am giving art classes at my sheltered accommodation scheme on Monday. Can't let this bugger beat me. Good luck with your haemotologist x

[Mardi in reply to jillydabrat]

Hydrea can cause small blood clots on the lungs???? Thanks for the info. I have heard that chemo can cause blood clots so this hydrea is a mild form of chemo.

[forwardocho]

Hello

I'm having the exact same issue at the moment. However, I was told my increased palpitations/shortness of breath were due to my being in menopause!

I find it so frustrating as I'm an ex dancer but now can barely climb a flight of stairs!

[Mardi in reply to forwardocho]

Another one of those ignorant drs blaming menopause or anything he thinks of . Please change drs!

[Vennie]

How comforting (if that's the right word) to know there are others with the same as I am experiencing. Some time ago on this site I wrote about blushing and gastro problems, found the gastritis due supposedly to aspirin irritation. Alternative med given, some relief. Then bloating - looks like I'm heavily pregnant - gastro blamed- then noted breathlessness but put it down to poor breathing technique (I'm a singer) , also BP erratic but finally got it stabilised now that I take 3 meds daily at different times. I had not seen my haem for a year - clinic telephone instead-when I did see haem just under two weeks ago and I told him of the last years range of symptoms, he told me he thinks the heart is labouring, so chest xray on same day, echo last Friday. Apparently blushing, big abdomen, fatique (which I've had from very beginning but is worse) breathlessness can indicate a heart problem. My life is on hold at mo because like you, it affects my quality. I am waiting for phone call or next apt in 3 months. I have ET (jak2) diagnosed after stroke.

[Vennie in reply to Vennie]

I forgot to say that at the moment I have a wheezy cough, a flu like symptoms, heat , sore throat,

[Inca]

Just want to say,it cannot be coincidental that we all suffer these problems at sometime or another,got to be the blood.I am having tests for everything but whitewash on Monday.....waiting with bated breath! Best everybody.

[lucieboo in reply to Inca]

I agree, it can't be coincidental, and we are sent all around other specialists to look at possible causes. It has to be the blood! I replied to Maz, hoping she will get this pursued.

[Mardi]

I only got the breathlessness before I went on hydrea. I didn't know there were side effects on the lungs from hydrea but I've had a lot of chest infections since I went on hydrea. I do have asthma and mild bronchiectasis however.

[sand-bog]

I am breathless (and eternally tired!) and was referred to a thoracic physician who told me he thought I had "bird fancier's disease" and suggested I got rid of my bird (a cockateil). I found a good home for him luckily and he seems very happy there but the next time I saw the doc he said he didn't think the bird was the problem after all - now he thinks it is my swallowing and wants me to go to a speech therapist - you would think at 75 years of age I would know how to swallow! No one has connected it to hydroxy - I think I will have to tell them ..... However we feel we must try and keep our sense of humour. Wish everyone well, Sandra

[lucieboo in reply to sand-bog]

What a shame about your bird! But at least you know now, we have all been sent on the roundabout for tests for anything you could think of, but it is definitely linked to the blood condition. I don't even think Hydrea is to blame. For most of us it is worse with cold, damp air. Take care, Sandra, and keep your sense of humour. The best thing is, it is variable, so you get good days as well as bad. Try the Yoga breathing exercises, no cure but probably helps.

[Mwalimu]

I too have had asthma in the past (before diagnosis) but notice that I feel a heaviness/tightness on my chest and feel breathless a lot of the time now. I find I feel better with a little central heating (19/20C) than a lot, but am constantly cold despite layers of clothing. My red cell count is good so clearly am not anaemic.

I would certainly appreciate knowing whether the feeling is a side effect of Hydroxycarbamide or something else. (I am over-weight which obviously doesn't help.) Before diagnosis I used to have 6 weeks of coughing etc before I could get rid of a cold but those days seem to have gone, thank heavens. Sallie

[Angelinagaffer]

Funny you should.all be talking about.breathlessness and stomach issues my friend and I have been discussing my.breathlessness today. I have.been.on hydro for 3weeks ,I was also told my.stomach issues were due to aspirin.

[lucieboo in reply to Angelinagaffer]

Hello Angelina: did you see Mazcd's reply? There is an ongoing study based on patients' 9 months diaries of symptoms and we all hope something interesting will emerge. These are strange diseases (MPDs) and it is frustrating when you can't pinpoint the cause of problematic symptoms as you struggle to find strategies to cope. I'm on Pantoprazole, Zantac and bicarb type things (like Gaviscon) for the stomach. I also use the coated Aspirin.

[Angelinagaffer]

I think it is the blood, because I had the stomach and breathlessness before the chemotherapy, before i was diagnosed and before the asprin. but my breathing does seem to be worse in the last two weeks. Most days, at some point , I feel like I am suffocating and crawl to the back door for air or during the night reaching for the power button on the fan, during these episodes, I feel so weak and I am unable to get the lid off the water bottle. May be the doctors don't know enough about our disease, may be that is why we are all sent around different hospital department because the disease is complicated. I was told I was high risk for heart attack and stroke, maybe that is why we are all suffering, it is part and parcel of our uniqueness. I have been eating parsley I get the one in the pot at the supermarket and just pick leaves off and chew throughout the day, my stomach has improved!¡!!!!🙌

[lucieboo in reply to Angelinagaffer]

Yes, be careful with your stomach. as I said I take Bicarb (Gaviscon will do) after breakfast, Zantac after lunch and Pantoprazole evenings. I don't eat much after 5pm, snack for tea. Parsley is good.

Sure the medics are missing something re breathlessness. I am hoping I will improve with the weather, definitely worse if it is damp-cold. Am convinced it is the blood, not medication/heart/lung origin.

Good luck and keep smiling!

[Hidden in reply to lucieboo]

Hi Lucieboo

I have been reading the posts about breathlessness posted about a year ago. I am also suffering from same. My husband brought me Ventolin which I now keep on hand. The symptom I find the most difficult to deal with beside the shortness of breath is the sudden variation in body temperature. I am finding it difficult to do grocery shopping or excerpt any energy as I fall flat and need to stop suddenly. Sometimes I have an urgent need to drink something. I found your comment on stomach issue interesting as I too have had stomach pain for sometime and was not aware this may be related to my ET Jak2. A chronic pain patient since 2005 and developed ET around the same time. Diagnosed by BMB in 2012. I have been on Hydrea for 2 years. I have only become really symptomatic in the past year. Finding it very difficult. Today was a good day however I still battled with the broken thermostat that my body has taken onboard.

Anna

QLD Australia

[lucieboo in reply to Angelinagaffer]

It is the blood! We are a mysterious bunch, doctors don´t like to say "I haven´t a clue!" so we get sent here and there. Well, I was down, I thought on the downward slide, now I am up again, so keep optimistic. Wish you all the best.

[Bridie123]

This is all very interesting, Hi luciboo, I have just read your message, then everyone else's. I will add to it with my account. It was what I call my fake heart attack that eventually led me to find out that I have ET. This was 2yrs ago, I had many tests including a angiogram leading to the conclusion that my heart is fine ,but interestingly I'm still out of breath at times, even when talking to someone, red face, large stomach, palpitations and oedema in legs. On a visit to the GP last Thursday he took my blood pressure and listen to my heart. Then I had a ECG and blood test because he thought my heart might be failing! It wasn't.....Few! Strangely though although my blood pressure is good and there is strong heartbeats, something is slow? Regards Carole.

[lucieboo]

I conclude these are just weird diseases. You can mention your symptoms to the specialist and they send you to someone else! I had a minor heart attack soon after diagnosis and before they got my haematocrit down to an acceptable level, and now I am treated as having heart disease, but I KNOW it was just a result of having thickened blood.

Keep taking the tablets! And exercise when you are up to it.

[Blood123]

My response can be for all. I am 70 female diagnosed with PV jak2 pos. In 2012. I take 500ng Hydrox and the last 2 years having 3 phlebotomies 2 weeks apart for 6 weeks. ... which I tolerate very well. I also have the breathless & tiredness. And it does come on suddenly, had all the heart tests and wore a heart monitor for a month. Cardiologist said he found nothing abnormal but I also have mitral valve and even ultra sound shows that to be mild regurgitation. I have palpitations and at times when I lay flat on my back can't get my breath so I'm thinking it's just the blood disease after it does affect the whole body. I still work hard but do give in to more resting between the hard work. Watch the sun, wear a hat cause I've already had. basil cell cancer removed from my head and pace yourself and stay hydrated! Good luck to all!