First day of Pegasys.
RafflesUK19 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
Chris387521 days ago
I was diagnosed with ET February 2016 with platelet count just over 2000. Onto Hydrea, dose slowly increasing to 3x500mg capsules 3 days a w...
Jakafi side effects
Chicagopv21 days ago
I’m 62, diagnosed w et about 12 years ago, pv a few years later. Terrible itching, esp in high temperatures, was driving me cra...
Clear smear but referred to gynaecological oncologist. Any experience of this ?
Kwebb21 days ago
I went for a smear test and the nurse said I was very inflamed and bleeding. She referred me to gp. He made an emergency 14 day referral to ...
PV and/or ET - JAK2+ - currently asymptomatic
Pat03201821 days ago
This is my first posting with the support group. I was diagnosed with PV in March 2018 where at that point my hematocrit was 62 and of cours...
Primary, Secondary PV or...
devilish3321 days ago
Hi, first post here! Last month I got checked into hospital with "apparent polycythaemic picture" with Haematocrit at nearly 60% but everyth...
Dennykev21 days ago
My partner has just started on 500mg hydroxycarbamide. He was diagnosed with PV 5 months ago. Is this quick starting on this drug. They hav...
Beware of spammers
MCW2221 days ago
Please be on your guard as there are spammers infiltrating this forum. I had a typical spam message from the username 'dsuesue45' I clicked ...
11 Replies10 Likes
Essential Thrombocythemia & Pain Killers
Mycancerconcern121 days ago
Hi All. I was just wondering what pain killers others have used for Bone pain headaches etc with ET. I paid a visit to my GP which again was...
Anyone for Vitamin D?
Ovingite22 days agoPOPULAR
I saw my GP today and learned that I am Vitamin D deficient with a reading of 25 versus a suggested range of 80-150. Has anyone else ...
23 Replies6 Likes
MFBMT201123 days agoPOPULAR
Anyone going to the MPNVoice extravaganza in London on Friday, which has been fully booked for ages? I am and would be happy to put faces to...
Idiopathic erythrocytosis confirmed
Aime23 days agoPOPULAR
Hi Guys, just been at haem. My jak Xeon test was also negative so my haem thinks I have idiopathic erythrocytosis which means I'm still pr...
29 Replies1 Like
Do I have an MPN?
RedSunrise23 days ago
Hello, I'm new on here but have been quite obsessively reading posts for quite a while! I've had elevated platelets for 4 FBC over 10 weeks...
Hughley23 days ago
Hope everyone is enjoying the post from Peter and his biggles stories most mornings.
6 Replies4 Likes
I THINK I HAVE A SPLEENIC INFART?
john008424 days ago
Help needed,pain in abdomin, checked on Google and it looks like the symptoms of spleenic infant!
6 Replies1 Like
New to the site
kiwitraveller24 days agoPOPULAR
I am a 67 year old New Zealander living in London and was recently dagnosed with Prefibriotic Myelofibrosis. Scattered symptoms ...
20 Replies2 Likes
Fedratinib by Celgene, offered on Expanded Access Program for Myelofibrosis patients (in the U.S.)
PVReporter24 days ago
I can't say anything about the UK, but we will know more soon. Thought you might find this interesting - pvreporter.com/breaking-new...
3 Replies2 Likes
It's been a great day!
Ovingite24 days agoPOPULAR
Well, what a turn around! For what seems like an eternity, but is actually about 3 months, I have been plagued by fatigue and any m...
26 Replies20 Likes
I have a panic disorder, please advise coz I'm getting very shacky nerves on the left hand palm.thanks
Patrick300025 days ago
I'm getting cold sweaty palms and rapid nerve movement on the left palm that causes the hand not to be stable and shaky what can it be
Leg fasciculations (twitches) anyone?
Alexbits25 days ago
I'm Alex, 34 y/o and it looks like I have an ET, with platelets 600-700, JAK2+ (17% burden), other blood parameters seem to be in t...
How soon does HU give results ?
aditigirishsp25 days agoPOPULAR
How soon does hydroxyurea start showing results in reducing the platelet count ?
20 Replies1 Like
PV stinging itch and Ruxolitinib
S031251a month ago
I really can’t wait to share how Rux has changed by daily life in less than a week.
I was approved for Ruxolitinib and started taking i...
13 Replies13 Likes
JP2018a month ago
Hello everyone, I'm new to the group and wanted to introduce myself. I'm Jim, I'm 58, and I was just diagnosed with PV on 10/15/18. I had ...
15 Replies8 Likes
Searcher56a month ago
I am considering the ketogenic diet. About 16 years ago I went on the Atkins Diet but I could not stick to it at all. But the science behi...
19 Replies2 Likes
Finally unda 5hundy
Frankydafisha month ago
Just got results back from hematology. Platelets at 460 so bk down to just 2 pills a day. Feeling good but still broke as .oh well who needs...
10 Replies3 Likes
Hydroxy To Pegasys
RafflesUKa month ago
I’m MPL/ET 2 years- I am about to come off hydroxy to go on to Pegasys, if you swapped, did you leave a gap between, if so, how long? Thank ...
Rux and Hydroxy
Graham7694a month ago
I had my haematologist appointment this morning.
Platelets are still high after 8 months on Ruxolitinib 20mg BD so I am to start Hydroxycarba...
Cando67a month ago
Hi,I was diagnosed with ET in february 2018. I am still coming to terms with the diagnosis.My main issue at the moment is with joint pain an...
Deefena month agoPOPULAR
Just had my yearly skin check with my dermatologist and mentioned I’d been recently diagnosed with ET with a JAK2 mutation. He asked if my s...
Jakafi weight gain and increased appetite
rkhabteca month ago
Was wondering if this is common
Start a Community