Happy Christmas everyone!
It's 2.48am & I'm up reading blogs and questions............The things I do for fun ay! 
Just thought it might be interesting to see how we vary. I'm 46, diagnosed Nov 2011, ET, 24 Anagrelide a week, 7 - 75mg Aspirin a week, Platelet count 374 (5.12.12)
Merry Xmas to you too. I'm 43, diagnosed PV May 2007, taking 75mg asprin daily & venesectionas & when required, platelets over 900,000 sadly. X
*venesections
Hi
I'm 42 diagnosed ET one year ago. I take just an aspirin a day. Platelets 500-600 . Can anyone suggest to me why I may not be taking other meds ? Bit confused
I had to start med's as my count was 1845 (high risk) Would prefer no med's as I find them hard to cope with..........I guess your count is only just above max?
Your count is only slightly elevated. Normal is 150-450. Eat Healthy, exercise, keep those veins and arteries free!
Merry Christmas everyone!
I'm 49 and was diagnosed with PV and ET in 2010.
I'm on hydroxycarbamide (1.5g 5 times a week and 1g twice a week), low dose aspirin and occasional venesections.
My platelets seem to be 'stuck' at about 700 and my haematocrit is currently around 42.
Jo
Merry Christmas,
I am 44 and was diagnosed with ET back in July, on 1500 mg Hydroxycarbamide, 75 mg aspirin, count slowly coming down.
Merry Christmas to you all. I'm 33 diagnosed with ET diagnosed 3 years ago. Platelet count is sitting at 1200-500 varies a lot. Only on Aspirin 75mg at present.
I'm 57 I was diagnosed Feb 2008 with ET. Hydroxy 2gm daily Clopidagrol 75mg, platelets finally down to 367 (Nov 12). Wishing you all a happy Christmas and healthy new year.
Hi Diagnosed with ET in 2003 I think...was on baby aspirin for almost 2 years until my younger sister had stroke and then put on hydroxy but after 3 years had to come off as got anaemic....now on analgride 1 x day...seems to be working OK for more than year with aspirin. Due to go for bloodtest after 5 months on 31st...spending Christmas thinking of all of you and sending merry wishes.
hi, I was diagnosed with ET and PCV in Dec 2009. Taking Hydroxy - 1 capsule 5 days a week and 2 capsules 2 days a week. My platelets were just under 1,000 when diagnosed, but are now 320. My red blood cell count has been stable for a year. Try to take aspirin but it gives me eczema and other symptoms. I'm 69.
It's so good to read how everyone is doing and to be able to share infomation and give each other support.
Happy Christmas to everyone and have a wonderful New Year
Merry Christmas ! I am a 59 yr old female and have been diagnosed with PRV for about 20 yrs now. In the early stages I had to have phlebotomys on a regular basis. After a while it seemed that my body kind of adjusted itself so my phlebotomys were way less frequent. Then about 4 yrs ago things started to change and I was put on anagrelide. for a while I was taking 4 0.5 mgs twice a day and now am on two 0.5mgs a day . I am also on an aspirin , 81 mg a day. Apparently I was told that, as you reach 60 yrs of age their is a higher risk of heart issues with the drug anagrelide. ( heart attack, stroke) My counts now have been, platelets in the 700's and blood volume having to be controlled again with almost monthly phlebs. My Dr now wants to take me off the anagrelide and put me on Hydroxyurea which makes me very nervous, from what I've read. I will probubley be posting the question soon , as to peoples experience with this drug. Good luck with your PV Hope this helps
Hi, in response to your concerns about switching from anagrelide to hydroxy I can give you a little insight to my experience with both.
When I was first diagnosed my platelets were off the carts, they stopped counting them at 2500+ I was treated with anagrelide, very high doses at first but as my count dropped so did the dosage. My side affects on anagrelide were not very good, I had terrible, diabilitating heart pulpaptations and head aches and was referred to a cardiologist which confirmed it was the anagrelide causing the problems amongst others. Due to a change of circumstances and doctors I was started on Hydroxy and I hardly have any side effects, an upset tummy every so often. For now I am really better off on Hydroxy but because of my age (41) and being diagnosed 8 years ago my Haematologist is pushing for me to go onto interferon.....now that scares me. Hope this has helped, stay strong and stay healthy, Regards Vanessa 
Happy Christmas one & all !
Age - 42. Diagnosed at the age of 33 with ET following an MI in 2003. Bisoprolol, Ramipril, Aspirin 75mg and Simvastatin daily.
Have taken Hydroxyurea, Interferon and Pegasys at various times in the past but presently in molecular remission and haven't taken any meds for ET for around a year.
Last platelet count 21/11/12 - 332.
I have never heard of molecular remission. What is that?
It is a temporary pause or more rarely a reversal in disease progression. I hadn't heard of it myself until my Consultant used the term. To the best of my knowledge it only occurs in a percentage of patients following the use of Interferon or Pegasys.
Happy Christmas to everyone, Good health for 2013
I am 49yrs diagnosed ET July 2011, platelets were 920, i take Hu 5oomgs daily, 75mg Aspirin, omezarpole, my platelets stay around 400, i feel good when i am at this level
I am 37 and diagnosed with ET in January 2012.
Last platelet count they were 749 and I am on Aspirin only.
Good luck everyone for 2013, I am 43 and was diagnosed in August 2000 with ET, currently on 42 Anagrelide and 7 Aspirin a week last count was just over 400.
Diagnosed primary MF March 2011,
meds:
Asprin 75mg everyday
Hydroxicarbamide 1.5g (3 tablets a day)
Platlets varible 400 / 600
Hi Dave, How old are you? ;-P if you dont mind me asking............
Sorry 61
Hi, Merry Christmas everyone. 55 female diagnosed with PV June 2012. So far controlled by venesections. Hematocrit was at 52, came down gradually to 42, going back up again so will need another venesection soon. Platelets were up around 500 -550 but down to under 400 now - still I hope!!
Best wishes to all for 2013.
Merry Christmas everyone! I am 46, female, diagnosed with ET this year, platelet counts between 400 and 500's, rbc 5.1, only on aspirin. A healthy New Year to all !
Hello,
I am 39, female, diagnosed with ET in 2006. Platelets were around 1,500.
Took 81 mg aspirin for 4 years.
Feb 2010 platelets were 2, 530. Started Hu
Currently platelets 1,500 on 1500 mg Hu daily.
My normal is around 600.
A peaceful and healthy Christmas and new year to all. 63 now, diagnosed with PV 6 years ago.Unable to tolerate HU so take 3.0mg anagrelide daily. Platelets currently 600ish..Regards hackett
Just wanted to say a huge thank you for sharing! Keep them coming gang! Wow, wow, wow..... Made a chart and how different are we! I promise I do have fun in other ways as well Hope you are all planning your New years eve celebrations and making fun plans for 2013. Each day is a new day, to be thankful for and enjoyed x love to all x
I wish everyone a very happy and healthy New Year. I'm 41, male, diagnosed with PV in February 2011. Currently on 75 mg aspirin and venesections every six to eight weeks. Platelet counts tend to vary between 800 and 850. Best wishes to all.
Hi Street Pastor
Just joined the world again, after Christmas hibernation, so bit late on the uptake on this one! Am 55 diagnosed in 1996 - was on Aspirin (75mgs daily) only, until 9 years ago when platelets were consistently just over 1000 mark. This is when HU was introduced 9 x 500 mg weekly (1 tablet per weekdays and 2 at weekends). This keeps my platelet count to the high 300's or low 400's - hope that helps with your chart. Happy New Year x
A Happy and Healthy New Year to all.
I am female aged 45 diagnosed with PV in 2005. only on 75mg aspirin daily and venesection when needed. platelet normally between 400 - 500. Best wishes Mel
Hi, Female age 44 diagnosed October 2012 with MPD - PV and ET (but advised the ET is okay now? not sure how it works out??) but they think I've had this for sometime. Now on 75mg aspirin daily and venesection when needed (only required 1.5 so far) also on Interferon injections 4 x a week. Was taking 1000 mg HU for the 1st four weeks, consultant asked me if I'd consider changing to the Interferon as it was better in the long term. My first blood test showed my HCT was 52, HB 16.9 and Platelets 1260 and had dizzy spells, breathing was great and very tired, my counts are still a little up and down but consultant thinks the Interferon is now starting to work. HCT is 44 (has been down to 38) HB has stayed around 13/14, Platelets went from 1260 - 334 then backup to 800 and now 649. Best Wishes and Happy New Year!
Hi,
I am Female aged 34, Diagnosed Jan 2012 with PV.
75mg Aspirin Daily and have recently had venesections every 4/6 weeks, I have had 4 now.
Platelet count in 700's at the moment.
Happy New Year everyone
I am 52have had E.T for 8 years on 1500 hydra and aspirin last count was395
Happy New Year everyone. I am male; diagnosed with PVR in 1983, changed to MF about 3 years ago. I used to have venesections and have been on HU all the time in varying degrees. Platelets went as high as nearly 900 for me at a long time ago and Anagrelide was tried but no good for my kidneys, so heavier doses of HU to kept things in check.
I am now on 1 HU x 500gm a day, with omperazole and Allopurinol and keeping well. White cellls tend to rise to as high as 20, but Haemoglobin reducing enough to make me anaemic. It's a balancing trick! Visiting my Haemo' next Wednesday after a rest of 12 weeks.
I've just come back from a week's skiing in North East Italy in lots of sunshine. Let's hope it will be sunny for us all in 2013.
First post ... as only diagnosed in Nov 12... platelets high 500s (age 49) currently experimenting with interferon - lowest dose has had no effect, just about to double that! Also on 75 asprin daily and 600mg iron..
Here's to a healthy new year and low(er) platelet counts all round!
I am 63 and was diagnosed in December 2011. On Hydroxycarbamide 1 gram per day and one half gram on Saturday and Sunday, also aspirin 75 mg, bendroflumethiazide and lisinopril, I also have simvastatin and pantoprazole for stomach ulcers. Before 2011 I didn't have any medication. What happened?!
Just on a different point though, I am quite surprised at all your posts which seem to show that contrary to what we are told, many people are well under the benchmark of 60 years which is the age we are led to believe that the condition develops. I have always felt that I have had something not right and in some ways I am better than I have been for years (since I was in my 40s). Is it more likely that it is actually being diagnosed earlier now and that diagnoses in the past were only recognised from the later manifestations of the untreated disease, ie as in my case erithromelalgia etc. The average age now does seem to fly in the face of what was previously thought.
That was exactly what I was thinking!
I think that it could be to do with the fact that GP's now do more blood tests than they used to. Ten years ago I had to literally plead with my GP to carry out a blood test if I felt unwell, but now my GP seems to do them without any persuasion at all!!
Maybe that is just my own experience??
My platelet levels have shown to be above normal for at least 10 years (which would have made me 27 when I may first have shown evidence of ET) but they have been explained by pregnancy and viruses by my GP! It wasn't until a nurse at the practice read my results in October 2011 that she thought to compare to previous results and realised that every reading for last 10 years had been high and thought some further investigation was required.
Think it is about time they re-wrote the leaflets and changed the age !!
Thanks Ruby for supporting my point of view. I too found it difficult to get full blood tests done and at a time I knew myself that something systemic was going on and it was getting to the stage I could have lost my toes my GP at the time still insisted on just sending away a test for gout. If feedback is listened to (and no feedback could be more up to date than this forum) then it does obviously need to be updated. I have read in some articles it is a disease of old age and this could be a damaging statement in all sorts of ways. One is that GPs who go by their own internet research would not bother to look for this as a diagnosis when younger people present with lesser symptoms. Also even family members of sufferers think its a disease of old age and on telling a sibling my diagnosis, he replied to the effect that "getting old wasn't great was it? He was quite lucky as he just had a little bit of arthritis but apart from that he was fine." It also makes you think that the condition is maybe not nearly as rare as is made out and many deaths from strokes and heart attacks are the result of these conditions and the amount of them with undiagnosed MPDs will never be known. Maybe if some of these people had been put on blood-thinning or other relevant medications these strokes and heart attacks could have been prevented. I was lucky to get a diagnosis in time.
Hi,
Male, 39 years old with ET. Platelets at around 650 and not taking any medication nor does it affect my quality of life, just some itching after showers. I feel lucky when compared to some of the more unfortunate souls on here but I suspect my time will come...
I would be interested to see your table Streetpastor.
All the best for the New Year everyone!
Thanks for adding your details. My chart is just hand written, no plans to do more at the moment. It's just interesting to see how we differ. Our ages are a lot lower than I was told M.P.D's are. Although a lot of us are newly diagnosed. It may be that our age group use the internet more?
Hi, Female, 54. diagnosed March 2012 with ET. Platelets were high 800ds, on 1000 hu daily, also clopridrogel, and simvastatin, platelets now steady at 400. Happy new year everyone.
Like Street Pastor and Crazy Daisy, I feel that my ET was picked up long after it developed. I returned to UK in '97 and from that time onwards had a constant history of fatigue, chest infection, and colds which lingered. I had lots of blood tests throughout and know the platelets were high but this was always explained - quite reasonably it seemed- in terms of infection. After 14 years of this, a GP recognised the count was high, and increasing, so sent me to a haematology dept.
I have recently got past copies of my blood tests, and my platelets were over the 400 mark in 2007, which I was not told about. I was also diagnosed with costochondritis in 2008, inflammation of the cartilage, again no one mentioned my bloods?
Hi, male 59, diagnosed with primary MF in Apr 2010. No related illness prior to this. Stem cell transplant in Feb 2011. Still on minor medication, penecillin, aciclovir etc to help immune system protect me while it redevelops. Just had some of my childhood re-inoculations (cant have all). Happy New Year and best wishes to all.
Fantastic news, well done you!
HI was diagnosed with ET in March 2008 due to pain in my side, it turned out to be an enlarged spleen. I had no symptoms previously. Nearly 5 years later I have had a slenectomy (nearly 3 years ago) I'm on interferon and anagredlide to control platelets, platelet count around 380, also take aspirin, propanalol, allupurinol, penecillin, omeprazole.
May I wish fellow MPDers a Happy New Year.
I received membership to my local haematology clinic in March 2010, having been confirmed with
ET Jak2 -ve, aged 63. Currently taking on alternating days 1g or 0.5g Hydrea together with 75mg
aspirin plus high blood pressure meds. At its highest my platelet count was 750 with a low of 386,
however, my last 4 counts have shown a rising trend from 400 in Dec 2011 to 500 last month.
So I remain cautious as to what my March count brings.
Best of luck everyone.
Dave
Hello,
I became ill October 2007(portal vein thrombosis) and diagnosed in April 2008(E.T).
Hydroxicarbamide
Clopidogrel
Propranolol
Omeprazole
Platelets usually between 250-390. I see the haematology doctor every 3 months.
Good continuation of 2013!
Hi all,
41 years old
Diagnosed in 2005 but turns out I had it for long before that
ET
Hydroxy 23 a week and an aspirin a day
Platelet count currently hovering at 650 and climbing 
Attend a nurse led MPD clinic every couple of weeks and see my Haematologist every 4 to 6 weeks
Here's to a healthy 2013
Iron deficiency 
Any connection ?
ET & Treatment
Changing the time of administering pegasys
Does anyone else feel like this? 
