I was diagnosed with ET 10 months ago. I have times when I experience shortness of breath. I am very active , work out 4-5 times per week.

[Lunacdh]

I feel like I have to take extra breaths or yawn frequently.

Has anyone out there experienced anything similar?

[Aime]

Hi Lunacdh, I have PV and notice in the last 6 months my body seems to take extra big sighing breaths on its own. If it doesn't happen, I do sometimes have to yawn like you do. Regards Aime

[Lunacdh in reply to Aime]

Thanks for the reply Aime! Do you think this has anything to do with the MPD? I have had blood clots in my liver.

[Aime in reply to Lunacdh]

I have only noticed the breathing since being diagnosed in 2012 so I was blaming my PV but tend to blame it for most things!! Aime xx

[PVPVPV]

I am PV and 61 (today!). I have periodically experienced something very similar since my mid 20s. It comes and goes without any pattern or warning and is not related to my PV.

[Sherry2 in reply to PVPVPV]

Happy Birthday!

[Aime in reply to PVPVPV]

Happy birthday. Aime x

[catkinspolymer]

no not me after 19 years of ET , the extra breathes are now old age,

town crier 69 yo

[beetle in reply to catkinspolymer]

I'm interested to see you have had ET for 19 years - roughly the same as me. Could I message you for a more private discussion?

[catkinspolymer in reply to beetle]

I am happy to answer ET questions in this public forum

[beetle in reply to catkinspolymer]

Thank you - I guess others can learn from this too. I am just a very few years younger than you I think and back when we were diagnosed there was little information out there - in fact my GP told me that ET was not even in the average medical textbook. Things have changed a lot since then. Have you ever taken any other meds for ET or just HU? Did you ever have a BMB? I had my first one only 2 years ago. I took Busulphan for a while which could be implicated in my progression to MF but for a long while I was on as much as 4 x HU tablets per day -or maybe I am just one of the small percentage destined to progress anyway. Does ET impact on your life at the moment? Has your dose of HU remained relatively stable or have you noticed an increase over the years? I know we are all so different but there are not many people on forums who have had ET for this long so I am very curious to hear your experience. Best wishes

[catkinspolymer in reply to beetle]

Hi , its quite a long story , As I had just fathered a second baby girl , I had a medical done privately in 1986 and the blood technician wrote " basofiles present MPD ?" . my Gp was told but I suspect he did not even know what MPD was. I carried onto 1996 doing nothing and was feeling very seedy with chest pains that wore off with exercise. My now new GP sent me to a cardiologist and he did blood tests and found platlets up in the 2000 level instead of about 300 and referred me to a heamatologist . He started me on HU and aspirin and did a BMB . He built the HU up to about 17 to 18 tablets a week but that has now fallen to 11 to 12 a week. For the first 10 years that controlled the platelets fine and the blood PCV stayed below 45 . However I have been having venesections for the last 9 yeras every 8 weeks or so to keep the PCV below 45. I realized back in 1996 that I might have to retire early so I had planned financially for it and retired in 2002 . I was having trouble doing the 10 hour days that as chief engineer of a busy factory was expected. . My energy levels are pretty good , I drink wine in reasonably large doses and have long continental holidays with my caravan. My baby daughter is now 28 and just finished a PhD in virology.

One further think I am Jak 2 negative, Whilst I may not make very old bones I do intend to do as much as possible in the time I have left. I do avoid long distance flights but that's also because i detest airports and all that goes with them . The regulations on moving sheep means they are better treated than airport customers.

Overall my ET interferes very little on my life.

all the best Town Crier

[catkinspolymer in reply to catkinspolymer]

ps I take one baby aspirin and one cod liver oil tablet a dy as well

[beetle in reply to catkinspolymer]

Thanks, We are all so different aren't we! Glad you are doing well. At least you show that not everyone progresses to MF even after so many years,

[RebeccaLubitz]

Yes, I have ET and have had similar issues. Are you on any medications?????? I originally was on Hydrea and because it prevented me from working out, I stopped it….my muscles didn't work and I had shortness of breath. I work out 5-7 days a week. I went on Pegasys which was awesome, no muscle fatigue, no side effects, controlled counts beautifully. Unfortunately, I developed a rare side effect of Pegasys…….lung lesions, it definitely affected my breathing after about 3 years of use.

[Lunacdh in reply to RebeccaLubitz]

Yes Rebeccalub I am on Hydrea and aspirin and Warferin. I've had this weird breathing thing long before I was diagnosed with ET. It comes and goes and usually lasts two weeks. It does not affect my workouts. It's just frustrating !

[Mazcd Partner MPNVoice]

Hi Lunacdh, I have had some advice from Prof Harrison and she has advised that you should speak to your GP about the shortness of breath, it is all too easy to blame our MPD for aches, pains and different symptoms, it is always best to get them checked out in case there is another cause for them. Kind regards, Maz.

[Joe1]

Hi I was diagnosed 6 months ago , so quite new to me ,But I believe I have had the problem for quite a while. Like you I like to be active albeit not to the same degree that I was , due to tiredness and fatigue. I swim 2o lengths twice a week, Gym once a week and Yoga once a week , also walk and golf when I can. HoweveIr I do get the issues you talk about and have had a little bout recently followed with a hevay cold , which compounds things. I thought it was side effects , but think more that it is the condition. I was an active runner up until I had mild MI 3 years ago, which some could argue may be associated to the ET that I have. I do think that with ET , you need to take as much rest and exercise as possible ( I know how does that work ). Keep your chin up !

[Sherry2 in reply to Joe1]

Hi Joe

I too have ET, swim once a week (try to do 40 lengths), yoga once a week and play golf with my husband.

Live in NW london, email me if you fancy a round.

Sherry

[Joe1 in reply to Sherry2]

Thanks for the email Sherry , Sounds as though you are similar to me and doing reasonably well . There are days when you are pretty tired and breathless ??? others days you feel normal and have loads of energy. It showed up for me on the golf course of places , I was struggling very tired , but thought it was the extreme heat we were having in Scotland last year ! feeling better now , but I am tinkering with some of my meds . The hydroxicarb------ seems to be doing what it should , but I am on some heart meds , as I had a mild MI 3 years ago , albeit the jury is still out as to whether the ET had any contribution to this , as I was exceptional fit , runner etc , etc. However we take the best of what we have and try to look forward. I am 51 on my birthday and work full time as a lecturer, love golf and trying to keep some sort of fitness. keep in touch joe