PV cough

[Harrisonmatty93]

Does anyone with PV suffer with a tickly cough? I’ve had one for about 4 weeks now and it’s beginning to worry me.

I also have Budd-Chiari syndrome.

Thanks in advance

[hunter5582]

I have not heard of a cough as a PV issue, but do experience the same thing at times. In my case it is seasonal allergies. It seems we got an early start on those this year. Suggest consulting with your GP.

[MCW22]

I coughed for years, particularly at night and when eating anything cold and also when I went down the chiller aisles in the supermarket. Consultant said they could see no reason for it and so nothing more was said, however after going on ruxolitinib I realised after a while that the coughing had stopped. Just occasionally struggle after an ice cream but nothing like as bad as it used to be.

[Harrisonmatty93 in reply to MCW22]

Thanks for the reply. My cough is more present at night as well. Tends to start getting progressively worse mid afternoon.

[PupsBestFriends]

I have PV and have had an occasional cough for about 6 weeks now. A few times an hour it causes one or two quick coughs and I feel a slight tickle if I inhale deeply.

I have been on Besremi for 6 months and I know it says to "call your doctor right away" if the cough produces yellow or pink phlegm, but I haven't coughed anything up.

[plum27]

I have had a persistent, dry, tickly cough for about 8 years now, starting before I knew I had PV but in retrospect I wonder if it is related. I have had all sorts of tests, all with the conclusion that there is nothing treatable wrong with me, but it has made it difficult to work because a few minutes of talking in a meeting leads to a few hours of coughing and once it's worked up it takes a few months to settle down. Harder to deal with now that codeine and tincture of morphine cough syrup are no longer available without a prescription. Nothing over the counter works and I don't have time and money to keep going back to the GP for a prescription and they don't have time for me. Mentholated lozenges help and alcohol helps me calm down enough to get some sleep, though I'm getting worried about how much it takes. I got Covid last year and it took 4 months for my throat to calm down.

I have no idea if it relates to my PV, of course. But the doctors have not been able to find any cause.

[Harrisonmatty93 in reply to plum27]

This seems similar to me. The more I cough, the worse it gets.

[Seakayak]

That's interesting. I have a recent ET diagnosis but had been having difficulty with a persistent cough for the previous 2 yrs. GP diagnosed reflux but gastrologist was unconvinced. The issue with talking a lot at work meetings causing an uncontrollable outbreak happened for me too. I have reluctantly admitted to myself that staying away from alcohol - particularly wine - does help a bit. Still not sure if related to the ET or not.

[plum27 in reply to Seakayak]

Just like me. GP said reflux but multiple tests of my lower esophageal sphincter showed absolutely no reflux in any conditions and Tamulosin did nothing to relieve the cough. My cough started about two years before my PV/ET was diagnosed, following a clot in my retina.

[TheaterCrazy]

When I saw your headline PV and Cough I stopped and reread it, amazed, and pleased. I never thought about putting together my PV and my cough of 4 years. It’s been called an idiopathic cough because they can’t find any reason for it. I’ve seen many many doctors. They had no answer.  

One of my husband’s contemporaries , a Pulmonologist, went back into practice recently. My husband is 82, so this is not a young man who is back in practice, but he is a man who has loads of experience. He ran me through lots of tests which all came back negative.  

At our second meeting with him, he said he’d had a young woman and a young man with an MPN years ago who had an idiopathic cough. He could not recall if they had PV. 

He prescribed Gabapentin, and I demurred, explaining that I had taken it before and the side effects were impossible to stand.  He persuaded me to try it for two weeks. At the end of a week I was calling his office to thank him. My cough was gone. If I forgot to take the Gabapentin, my cough returned.

I can not attribute my cough to my PV but it came before my PV diagnosis as did my burning tingling feet and lower legs and hands AND my fatigue. The Neurologist found nothing and the Internist found no reason for my fatigue (they all reminded me that I was old - so many ailments are attributed to old age!). I also saw Dermatologist for itching. She ran lots of tests too. Nothing came back as the cause. Then I was diagnosed with PV,  all three of those symptoms made sense. Could the Cough and PV make sense some day? 

[MCW22]

It would seem that a lot of people with PV also have heartburn and reflux, myself included. I believe its something to do with the esophagus that results in the cough. Maybe esophageal spasms.

[Peter18]

I was fascinated to read the comments written in reply to your question.

I went to see my GP regarding a persistent cough some years ago (2016-2017). I had lots of tests but no clear diagnosis emerged and my GP suggested it might perhaps be "post-nasal drip" (I frequently have a blocked nose, one one side or another) and acid reflux.

In February 2018 I was diagnosed with PV following blood tests for a quite unrelated matter.

The cough has continued on and off sincce then. It's normally loose which makes it easier to clear. I, too, find it's more noticeable in bed - does the prone position contribute, I wonder?

Anyway, best wishes to all the PV+cough community out there!

[IntheBag]

Hi, I have ET and Budd Chiari. I was diagnosed June 2020 and have always had a persistent cough pre and post diagnosis, I believe I was asymptomatic for quite some time prior. My haematologist sent me for a chest X-ray and all came back ok. She does feel it’s to do with reflux and interestingly I was traveling home from a work trip and the gentleman sitting beside me started saying how he has recently been diagnosed with Laryngopharyngeal reflux (LPR). When I am at my next appointment I am going to pursue this angle.

Hopefully you’ll get some clarity soon.

[Harrisonmatty93]

I think I would benefit from a chest X-ray to rule anything chest related out

[Cja1956]

I was diagnosed with ET 15 years ago and I also have had a persistent cough since. Over the years, I’ve seen several doctors and have been diagnosed with acid reflux or GERD, and about 3 years ago with sleep apnea. I started using a cpap machine and it really helps. I resisted getting tested for sleep apnea for years so I suggest you look into it. I have more energy during the day and I don’t wake up at night with terrible coughing fits like I used to.

I wish you all the best.

[Barbiebreath]

Yes! I have never thought to correlate it to the PV but maybe that has something to do with it. Mine is an uncontrollable tickle which leads to a cough when eating or drinking. It’s not always but enough of the time that it’s gotten my attention. 🤷‍♀️

[Harrisonmatty93]

This sounds very similar to mine. I attribute to PV as it has only started around 4 weeks ago. I’ve had PV 7 years but around 4 weeks ago I started to get unwell again

[289651]

Before I was diagnosed with PV I was taking medication for high blood pressure. Was having a cough. After I quit taking it. The cough went away. The doctor said it was a side effect of the medication.

[Jelbea]

My diagnosis is ET jak2 positive. I have been on hydroxycarbamide for almost 2 years. About six months ago I started having some difficulty when swallowing which often ended with coughing. I was told by my GP it was GERD but I was not convinced. MacMillan nurse said it was nothing to do with ET or hydroxycarbamide treatment. I became increasingly worried and GP arranged ENT appointment. I had tube passed as far as vocal cords and all normal and was again told it was GERD and given Lanzoprazole. I did not think I had GERD and I arranged for a gastroscopy privately. This did not show any reason for swallowing difficulty and I definitely don’t have GERD.

In my case it is probably an age related problem with no answer and now I know there is nothing sinister I can manage symptom - some things are easier to swallow than others.

One thing I did learn is that when coughing starts try to resist by yawning. I thought this sounded silly but find that it works.

[Hidden]

I also suffer with a cough and have always put it down to a weakness since having whooping cough when I was 15. However, the past year I’ve had more then my fair share of coughing bouts, was diagnosed with PV in December 2022, I have to take blood pressure medication and notice that my cough has not subsided since then. The contraindications of the meds include a cough. It’s a minefield!

[Lenten]

yes my husband has the PV cough and takes Hydroxy Vera.

[Jo3560]

Hi I also have Budd Chiari, PV and JAK 2 positive. I take hydroxycarbomide, intaferon, warfarin and aspirin and always have a cough !! Cough started in 2005 when I was first diagnosed and put it down to the build up of ascites . Most days I have an annoying cough ! When I next have an appointment I will discuss with haematologist.

[Xuzy]

Hello how did you get diagnosed with Budd chiari and what treatment are you taking