polycythemia Vera

[nightssky]

hello I'm new to the community and just learned from my go who suspects I have polycythemia Vera been waiting now for my appt with a haematologist to look for jak2 to confirm either primary or secondary 10 wk wait just another 6 wks to go (Stressed)

[Peter18]

Welcome to MPN Voice. I was diagnosed with PV in February this year and have been on daily hydroxy since March. I'm sure you will, like me, find lots of friendly support, encouragement and useful info on this forum. Stay positive, keep active and don't worry about things. Very best wishes, Peter.

[nightssky in reply to Peter18]

thanks Peter this site is just brilliant nice to be able to connect with others that understand ...

[lizk1993]

Hello nightssky and welcome to the community. I too have PV, diagnosed last year. Please don't stress too much, it's a condition for which there is plenty of treatment. Other than more visits to hospital to get my bloods checked and a venesection, if necessary, the condition hasn't made a great deal of difference to my daily life. There's lots of people on here who have more knowledge that I have, and who will give you lots of reassurance and support. While you wait for your appointment, have a look at MPNvoice - lots of useful information on there. Take care. Liz

[nightssky in reply to lizk1993]

thank you for your lovely welcome your advise is much appreciated ,

I'm feeling very fatigued lately headaches ,itchy, achy the whole nine yards not to mention the lonelyness I don't no who to talk to I don't no any one else with this illness so you guys are a god send what a life line this site is ....thanks again

[Aime]

Hi nightssky and welcome to the forum. As you’ll have seen already we are a friendly bunch. Liz has given you some good advice about having a look at the MPN Voice website which like this forum is monitored and has trustworthy information. Be wary of googling as some of the information can be incorrect and alarming.

Try and keep yourself well hydrated and eat as healthy a diet as you can. With the correct monitoring and treatment if and when necessary, I understand our life expectancy is normal. Above all, don’t panic, there are folk on this forum who have been around for many years and keep in touch - someone is always here to support you.

Kindest regards Aime xx😺😺

[nightssky]

hello thank you for your lovely welcome

I'm not sure how navigate this site yet ..I'm not exactly sure how to ask a question to a wider audience so to get more replies .currently I'm reading through posts and replying individually

I wanted to ask the question has anyone ales had hypertension issues as well as low serum folate levels along with high red, white , haemorcrit ,Mcv , I'm still not yet confirmed with the Pv diagnosis got to wait till end of October when I see the haemotoligist ...how would I post this to a wider audience on here ...many thanks

[Inca]

Welcome Night Sky to this club of very special people!! Here,you will feel less lonely,less unusual and chat away,grumble away ,we all understand,we all have the shock and worry of a rare disease that our friends cannot comprehend..it gets easier to deal with in time,tho at first can be very stress ful . I am P V ,78 yrs,still work as sculptor,have two mares and two large G S Ds,fortunately a brilliant hubby to help and good Drs. So worry not ,you will cope,best to you and read all you can from M P N voice.

[Ebot]

Hi and welcome (properly!).

I know we’ve just had an exchange about CI cover on an old post. My guess is it’s best to raise questions in a new or recent thread. Not everyone puts a message alert on and may be unaware you’ve posted a query on an old post of theirs.

Diagnosis is always an anxiety inducing time. Lots of questions, confusion and unnecessary stress! Answers and understanding will come. Be easy on yourself. The key thing is to be informed as best you can and MPN VOICE is one of the best and most sensible resources. There’s a lot of out of date stuff on Dr Google which quite frankly is not only wrong but terrifying. Having a clinician with an interest and expertise in MPNs is also important - though, depending where you live, not always achievable.

Keep asking questions here. Someone will be able to share knowledge and experiences. And Maz, our super moderator, knows where to find expert answers. Take care.

[nightssky in reply to Ebot]

thank you so much every one on here is so kind and supportive this site has lifted my spirit I've been so down lately thanks to everyone with whom I've contacted the replies come back so quick .

another question (sorry )

when your gp ( I'm in uk ) first referred you to haematology (nhs) uk

how long was the wait before your had your 1st consultants appt ?

thanks

[Ebot in reply to nightssky]

When my GP eventually got a bit stern(!) with me and insisted I saw a haematologist - I had an ever increasing platelet count - I initially went privately because I happen to have private health cover. I saw a respected Prof of Haematology at one of the major London teaching hospitals. After a raft of tests, scans etc he confirmed the diagnosis (including the JAK 2+) but suggested I should see Prof Harrison at Guy’s. I am very thankful that he was sufficiently sure of himself to understand the specialist nature of the disease and to refer on. From there it was a matter of weeks before I had an appointment at Guy’s but it was slightly tense as my local health authority had to agree to the tertiary referral. My impression of Guy’s is that the department has become increasingly busy over the years. (For the record Prof Harrison does not run a private clinic and in any event most private health plans don’t cover chronic conditions.)

I’m not sure where you are based but I’m sure people on the Forum can give you advice about who to see and where. It makes such a difference if you can be cared for by an MPN team (not always possible). Wishing you all the best.

[nightssky]

ok thank you I'm in the East Midlands on nhs don't have private H/I unfortunately I'm not sure either if the haematologist will be informed with regard to MPN'S either .

So will just have to roll with it and see what happens ..

Thanks again

[EleanorPV in reply to nightssky]

Hi nightssky,

I’ve been diagnosed with pv over 2 years. I remember the long wait for the JAK2 gene mutation test results. This felt like time had stopped.

In someways I was lucky. My haematocrit was 0.68, which lead to many venesections before my confirmed diagnosis.

You mention hypertension . When first diagnosed my BP was high. As my haematocrit was reduced my BP slowly came into ‘normal’ range. I believe I’m unusual having this response but I am living proof. Something to keep in mind. With MPN’s, we all have individual responses.

The one helpful habit to form is: water should now be your best friend.

Eleanor

[nightssky]

wow that haemorcrit was high !!! mine is 0.53 my white cells are up @ 12.8 & MCV @ 105 red cells @ 5.53. haemoglobin is 16.8

they have been similar with slight fluctuations for about 5/6 yrs now but nothing was ever done about it UNTILL was in A&E a few wks back with chest pains ..I've had many symptoms over the yrs fatigue being the most debilatating the hospital visit seemed to get the ball rolling though so all will be revealed with my appt at end of October .

thanks

[Aime]

Hi nightssky,

Yes my bp was high before I was diagnosed. One time pre Orthopaedic op it was 198 over 101. My surgeon was concerned to say the least. I’m still on ramipril to keep my bp in check which is really important when Polycythaemia makes your blood thicker. Kindest regards Aime xx😺😺

[nightssky in reply to Aime]

hi Aime,

I have also been having issues with my folate levels despite eating plenty veg doc put me on folate tabs last yr for 4 months but the level remains at bottom limit ? not sure why though .

your blood pressure is similar to mine , I'm taking 100mg Lostartan 1 tablet a day Rampril gave me a awful thickly cough

seems Pv patients are a real puzzle for Gp's

[Aime in reply to nightssky]

Yeah we certainly don’t make things easy for them. I’m sure my poor gp cringes when he sees my name on his list - I see quite a lot of him, poor man!

Kindest regards Aime xx😺😺

[MCW22]

I can identify with high numbers on blood tests being ignored by gp until finally the whole lot went up. I was then seen at hospital after only a 2 week wait. Had venesection the next day. Took a few weeks for jak2 result to come back. Now on hydroxycarbamide. Fairly good treatment in Norwich, Norfolk

[nightssky in reply to MCW22]

thanks for your kind reply & you were really lucky to have had your appt with haemo so quick ..it's the waiting that adds to the stress of the whole situation ..

[rkhabtec]

Hi Welcome I was dx with PV the end of Jan this year. Hurt my leg and could not walk went to er. They did ultrasound because I had a stroke in July 2016. Thought maybe a bloodclot. They drew blood came back in and drew more I said What bad blood? Got transferred to different hospital and immediately drew out 500cc of blood. Then Thur another 500 following Mon 500 and following Monday 500. Total of 2000ccs.My Hemotologist sent sample away and tested Positive for Jak2. I opted to start with the new chemo Jakafi started 10mg 2xa day pills for 2 weeks. Had my nect blood draw and that was my test. It worked and brought my platlets from 750 to 704. So increased to 20mg 2x a day and in 2 weeks took them down to 232. I have been and will remain on it for the rest of my life. I will attest it has made my life so much better. More energy have not had any itchiness or Migraine headaches since Jan. A total Blessing. Did not realize how sick my body was. I am 68 and Head of Laundry Dept at a facility for training Developmentally Disabled Clients. I do daily laundry for over 50 clients Mon thru Fri. Have been there in the 15th year. I love it it is so rewarding. By the Grace Of God will be sober 34 years Dec 10th. Jakafi has given me a much better life. So glad to be able to enjoy my 2 daughters and their families. Have 12 Grandchildren and 2 Great Grandchildren. Many sport events. Oldest Granddaughter getting married next Aug. Life is Good. I am so glad like you to have found this site. I would like to give out a huge shout out of Thank You to all here. Best of Luck to all and I love you all. Keep on Keeping On.

[nightssky]

hello & thank you for your reply & the interesting insight into the lead up to your diagnosis .so pleased all has worked out well you .

[Mazcd Partner MPNVoice]

HI nightssky, welcome to our forum, not much I can add to the replies you have had above, other than to say, ask any questions you have and someone will answer them for you, we are here to help and support you. I note that you live in the East Midlands, don't know if you are able to get to Nottingham, if you can we are holding a patients' forum on Thu 4 Oct full details here

mpnvoice.org.uk/get-involve...

I would recommend that you come along if you can, it might help you to meet the medics and other patients. Best wishes, Maz

[nightssky in reply to Mazcd]

hello thanks for the warm welcome ..& for the invite to Notts I'm away in cornwall over that period but will be interested in other events in the future ...I don't see haemo UNTILL end of October for tests etc & confirmation of docs suspected prv dx.. but once I know for sure what I'm dealing with I can start to come to terms with it properly ,

my head is all over the place at the moment ..you have all been in the same situation I'm sure ,

so I'm finding it all very overwhelming at present

in fact the only thing keeping my head from frying is the folks on here that always seem to find time to answers any questions I post .

A BIG THANKS TO EVERYONE x

[Heidi-W]

Hi there

Your GP can arrange the Jak 2 blood testing so may be worthwhile asking to get this done now so that you have the results when you see the specialist in a few weeks. Good luck.

[nightssky in reply to Heidi-W]

Really ...I wonder why they have not already done that I will ring them tomorrow thanks for that valuable peice of info x

[Heidi-W in reply to nightssky]

Afraid most GPs don't have that much up to date knowledge re these conditions. I am one myself and hadn't heard of Jak2 until I was diagnosed end of last year and my GP didn't know it either. If the GP has any worries they can just liase with their local haematology team re what to order but it makes sense to get on with them so the haematologist has the results back for when you see them. Hope it goes well for you.

[nightssky in reply to Heidi-W]

Hi Heidi I quite agree I've just come off the phone to the doctors after our last chat the doc who I'm under is not back till wed so the receptionist said she will send her a task ? via email to ring me when she is back in surgery ..I will ask why test has not been done already given her suspicions about Dx it's strange the haemo dept at hospital have not already liaised with her to organise getting that test done before my appt with them ??

I just hope my gp doesn't think I'm a nuisance when I ask her ( if ) she rings me on wed ..are you in uk on nhs or in the states ?

[Heidi-W in reply to nightssky]

Hi I work for our amazing NHS in England!

Re the test I think my GPs got my results and had e-mailed the haematologist for advice as my Hb was quite scarily high with Hb of 199 and haematocrit of 0.6. Our haematologist is very approachable so he'd recommended getting the Jak 2 bloods done by the GP as can take 3 weeks to come back whilst awaiting for the outpatient appt- think once the request is put on the electronic ordering system the labs and phlebotomist are aware re which sample bottles to use etc. Sometimes the specialist in the hospital won't see the letter till you are in clinic hence it can be useful for the GP to contact the secretary in the meantime for advice. Hopefully your local haematology team are approachable and will be happy for your GP to send this off.

I'm afraid most of my GP colleagues are unaware re the reclassification of these problems to MPNs and all the latest research and the Jak 2 test so I would just gently ask to see if you could get it done following research you have done then hopefully GP will be happy to proceed. Good luck.

[nightssky in reply to Heidi-W]

ok thanks Heidi will follow your advise thank you so much for your reply ,

kind regards nights-sky

[Hidden]

Hi night sky,

I am in the same boat as you waiting for my first appointment with a haematologist, my appointment is the 28 November so six weeks to go. You only have a couple of weeks to go now. Please let me know what happens

Elaine

[nightssky in reply to Hidden]

hi Elaine

yes it's Been a stressful long wait & although my appt is on the 25 oct I think it will take another 2/3 wks for the jak2 test results to come back but I will let you know how my appt goes so you know what to expect

take care Hun i will be in touch next wk with a update

[Hidden in reply to nightssky]

Thanks, take care of you 🙂