Just diagnosed with prv jak2 confirmed

[john0084]

Hi everyone, I live in the UK and male aged 54. Confirmed with primary polycythamia Vera I have the jak2 gene . I take 1 hydroxy. Tablet every other day with a blood thiner. What starting to worry me is weight loss, I've lost about 10ibls in the last month. Anyone with any help.

[Susana7]

Hi John, I also have PV, since 2014, and am on Pegasys interferon and low dose aspirin. My bloods have now been normal for 2 years. I lost weight initially but that was because I changed diet (very little meat or alcohol now)! Is your spleen enlarged? That could cause loss of apetite as you feel fuller. If so, some people have had success with Ruxolitinib/Jakafi in reducing the spleen. I suggest discussing further with your haematologist. Good luck! Susana

[john0084 in reply to Susana7]

thanks for your reply susana , im seeing my haematologist on Wednesday so shall ask him his opinion of my spleen. I too have cut out red meat and alcohol but I do eat normally. thanks for wishing me luck.

[Inca in reply to john0084]

I also lost weight,prior to P V diagnosis and the first few months when I was quite ill,once blood improved ,Hydrea and other Meds to thin blood,I soon got back to my life long 50kilos,in 8 yrs stayed exactly that,tho up and down with Hydrea dose,depending on blood results monthly. So worry not you I'll get back to normal!!Some people say Hydrea makes them put on weight.....As you mention a sensible diet is essential,and lots of water daily.Best to you .

[Poppy112]

Hi I also lost weight just prior to pv diagnosis some was intended but lost more than ever set out to do. I found the 1st 5months when I had lots of side effects on the standard interferon I just couldn't put any weight on, but now on pegasys Interferon and have no side effects and weight increased slightly. Talk to your doctor for reassurance and to check your spleen size otherwise try not to worry. All the best.

[MCW22 in reply to Poppy112]

I too lost weight at first. Probably due to the worry of the diagnosis then the nausea caused by the hydroxy. However the nausea wore off after a couple of months and now I've put on the lost weight and more besides.

Carol

[Peter18]

Dear John,

I was diagnosed with PV in February this year. Since Summer 2017, I have lost about a stone. I have attributed this to a conscious change in diet this Spring in terms of content and quantity. My weight is now stable. I hope things settle down for you in this respect. Best wishes, Peter

[john0084 in reply to Peter18]

Thanks Peter for getting in touch, the replies on here are keeping me positive, I guess it's early in my diagnosis to be that worried.

[john0084 in reply to Peter18]

I was wondering what a clinical haematolgy appt. might entail as it is I have weekly apptts at just the haematologyy dept. Many thanks in advance

[Mazcd Partner MPNVoice]

Hi John, hope you get some reassurance tomorrow when you see your haemtologist, it is a worrying time when you are first diagnosed, it can take a while to come to terms with it all and to learn about it, I would urge you to read as much as you can on our website mpnvoice.org.uk and when you see your haematologist write down the questions you want to ask, it helps to keep you and him/her focused, and if all your questions are not answered perhaps you could leave them with the haematologist or the nurse specialist and they can email the answers to you. It also is a good idea to take someone with you as another person hears different things and maybe thinks of different things to ask. Hope all goes well tomorrow. Maz

[john0084 in reply to Mazcd]

Thanks I will take your advice. Regards