Still shaking my head
jillydabrat11 days ago
This is a long post so please be patient.
I had not been feeling good for a couple of weeks, i.e. much tireder than usual, slurry speech, stu...
Want your opinons or experiences
skodaguy11 days ago
My megaspleenomegaly has not increased in my opinion but was lately measured at 35cm. Recently started taking fexofenadine for itching which...
ET and iron intake and supplements
Searcher5611 days ago
Since being diagnosed with ET JAK2+ in November 2016 and 9x500mg Hydrea weekly, I have never been given any information on either taking ir...
PV diet and excercise in addition to hydroxycarbamide
Hughley12 days ago
I had my bloods checked yesterday and my platelets have increased dramatically over the last few months. I was told by my haematologist that...
14 Replies2 Likes
Update from a PV Newbie
JP201812 days ago
I had my follow-up visit with my hematologist on 10/31 when he confirmed my diagnosis of PV. I had been getting 3 venesections per week sin...
9 Replies2 Likes
Cold without fever.
Kelly212 days ago
Hi I am on Hydroxyurea 500mg a day and have a cold for some days runny nose and eyes and some chest pain when coughing (not often). What ant...
Does anybody take very low dose of Hydrea?
love082612 days ago
so suddenly my counts are more normal, after taking 500mg daily of Hydrea for a little more than a year. The doctor suggested to try ...
17 Replies2 Likes
Short term memory
Foss3313 days ago
I am 40, I have PV and was diagnosed 7 years ago, I take aspirin and have venesections no other treatment.
Recently I have become increa...
Nothing to do with an mpn but hope it makes you laugh on a grey old day.
Loubprv13 days ago
Really, how much longer do we have to put up with time wasting cold callers on the phone?
I’ve just had a call which made me hurtle down the...
16 Replies20 Likes
RafflesUK13 days ago
Had a few days of real bad bone pain, it’s keeping me awake and driving me nuts, what pain meds are people on. The doctor gave me CoDydramol...
Shingles vaccine update
Ovingite14 days ago
Hi folks, and thanks for your responses. I called my haematology department today and they advised that it is ok for my wife to have the zo...
Margo1814 days ago
I am due to fly to Boston in a couple of weeks from Dublin. I follow all the usual recommendations for travel but up to now have used...
Melaniem5914 days ago
Just cut my leg & it was bleeding, running down my leg, next thing I have an actual soft clot of blood on my leg, definitely sticky blood! ...
Hydroxy and shingles vaccination
Ovingite15 days ago
My wife went for a flu & shingles jab today but was advised by the nurse not to have the shingles vaccination because it is a live virus and...
Garden98715 days ago
I wonder how many of our MPN family experience low mood. I have ET and CFS and have had a UTI for 2 years which has finally been dealt with...
Albt4z15 days ago
I have PV JAK2+ dx three & a half years. Been on Hydroxycarbamide for a year & a half - 2 x 500mg daily. Since August, every three/four week...
Sallush15 days ago
As a PV patient on Rivaroxaban, Hydroxycarbamide and Amlodipine, I know we’re not allowed ibruprofen. Does anyone have experien...
Fingers sore...PV or arthritis?
Alex962115 days ago
Both of my middle fingers at the first joint are starting to turn out. It is painful, red, and getting worse. This started shortly after be...
update New Beginnings
Hughesf15 days ago
well evening all from Spain..
New Beginnings .. its been a quicl 14month since moved to Spain
with my new lady.
started a printing and embroide...
10 Replies1 Like
London Forum 23 November
Searcher5615 days ago
I attended the London Forum last Friday on 23 November 2018 and I found it very warm and friendly. Thanks to all organisers and participant...
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Mysi17 days ago
I’m PRV jac2pos. On Hydroxycarbamide and aspirin for last 15years, venesection about 4 per year.
Last three nights awakened wit...
Blood donating/ Venesection
yarrowleaf17 days ago
I have two questions which I've been pondering about recently :
1. I've been donating blood for most of my grown up life, but stopped some 5 ...
Scottishterrier17 days ago
i would gave hydroxycarbamide a go yes you feel a bit nausea to start with but you can get a drug called domperidone which cures i...
1 Reply1 Like
Melanie6617 days ago
I was diagnosed earlier this year .... ET...I am being asked to take Hydra carbo but I have declined .... now am considering interfe...
Injecting Pegasys- Air Bubbles
RafflesUK17 days ago
You know when you inject Pegasys, I was told to make sure there was no air bubbles in the liquid, but the nurse said it was ok that there wa...
London Forum Follow Up
MFBMT201117 days ago
Didn’t get 100% success at last night’s London forum although to be fair my Where’s Wally shirt was hidden under my coat for some of the tim...
18 Replies5 Likes
Undiagnosed officially for more than 10yrs.
Loubee2717 days ago
I’m a newby and still officially undiagnosed but to cut a loooooong story short I’ve had around 6-8 venasections over the past 10 or s...
Allopurinol when first taking Hydroxy
azaelea18 days ago
Hi again everyone. Since writing a post I have finished my 3 weeks' radiotherapy now for breast cancer, during which time my Hydroxy for ET ...
Scottishterrier18 days ago
hi Cancerconcer1 i know you can by co/codmal 8/500mg over the counter at a chemist try taking them but you may find you get constipation but...
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First day of Pegasys.
RafflesUK18 days ago
After two and half years on hydroxycarbamide, today was my first day on Pegasys. Injected myself for the first time ever, didn’t hurt one bi...
11 Replies3 Likes
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