Keeping Interferon cool whilst travelling
PT999 hours ago
Just wondering if anyone has any tips for travelling with Interferon? I’m travelling to Portugal in a couple of weeks and will need t...
WileyFrench17 hours ago
I’m prescribed 1X daily Hydroxyurea for ET. I’m supposed to begin it tomorrow. I’m also now taking the antiplatelet med Clopidogrel. I know ...
8 Replies1 Like
Elaba day ago
We are going to France beginning of August for 2 weeks.
Do I need health insurance or my EU card ( blue health one ) will cover me just in c...
janwha day ago
I was diagnosed with ET 3 years ago, and it has been well controlled until recently. I’ve felt like I have flu and have had bouts of diarrho...
Newly diagnosed with ET
Lemon123a day ago
Hi, I was diagnosed with ET 8 weeks ago, but when the Drs looked back at my blood tests, the platelets had been high since 2003. It's good t...
17 Replies6 Likes
kp27kathleen2 days ago
Is ET cancer or not?
MPN Reseach Foundation site : worth knowing about
Rachelthepotter2 days ago
This is a llnk to the MPN Reseach Foundation website
Its going from strength to strength, and is supported ...
2 Replies3 Likes
vipulm122 days ago
went for annual health check up in april.my rbc,hb and hct levels were high and just had jak2 test which came out negative,now waiting f...
Coping with fatigue dates
Pauline432 days ago
Leukaemia Care are running a series of days to help with coping with fatigue. The next one is in Cardiff on 15th September and then there is...
8 Replies2 Likes
A game changer for Aussies with MPN
CommonDaisy3 days ago
Such amazing news to wake up to- I was actually in tears of joy!
MPN Alliance Australia Facebook page has just shared this exciting news! We ...
4 Replies11 Likes
Just starting out on hydroxy
WileyFrench3 days ago
I’ve been diagnosed with ET, and have had the full barrage of tests from blood work through MRI. When the Canadian health care system kicks ...
18 Replies1 Like
Kelly23 days ago
Unfortunately I have noticed more than once that people here post something that bothers them with their illness without giving full details...
14 Replies3 Likes
Good news Ruxolitinib
waddles223 days ago
Husband this time last year was crawling up the wall with itching all over pruritus terrible. Diagnosed eventually after 12months with JAX_2...
2 Replies2 Likes
Brendaf4 days ago
Hi I’m reading about CLL but mine is CNL does anyone else have this diagnosis? Apparently I’m only one of five in the country with this very...
dgk704 days ago
Hi all, I was diagnosed with ET over a year ago I am currently on Hydroxy And Aspirin , I drink about 3 litres of water a day but at night I...
Belfast Forum In Sept.
nanmc4 days ago
I was booked to attend the cancelled forum and am now looking at travel options to the rearranged forum in Sept. Is there anyone else going ...
Brand New To The Group
ansaseeker4 days agoPOPULAR
I am writing this after 12 weeks of continual blood tests, with each one coming back platelets high, I have been terrified, fina...
26 Replies2 Likes
Et & raynauds phenomemon?
Tico5 days agoPOPULAR
As anyone on this forum who as et jak2 postive been diagnosed with raynauds phenomenom?
stevengeorge5 days ago
HI Pippa the reason why you have to attend the dentist at the hospital you attend as they have got your blood counts on hand and if there is...
Pippa635 days ago
Hi everyone , I recently moved and found a very nice dentist who is very helpful but she has told me she won't extract teeth because of my E...
Diet for a patient of myelofabrosis
nidaali5 days ago
My mother in law is suffering with myelofabrosis and rapidly losing weight. Kindly guide me for good diet
Foot and calf cramps
mbr80765 days ago
Thank you being here! I was diagnosed in February with ET/ Jak 2+ after having a mild heart attack in Nov 2017. I have been on Hydre...
Platelet rise and fall
Sarahjane1005 days ago
Can anybody tell me if platelet levels can drop suddenly without medication? Mine were 591 and now 452? I am triple negative and thought I h...
I have pv, could I have me/cfs too?
Emeraldpv6 days ago
I have all the usual symptoms/issues with pv the main one being fatigue. But it really lays me out and I’ve been off sick since April.
Cool clothes - on sale!
Ebot6 days ago
Someone (forgive me, I can’t recall exactly who) posted recently about some great Voile shirts on sale at Laura Ashley. Thank you! I ordered...
1 Reply4 Likes
Seeing hemo today, still no word from France, Wife's dropping off a cliff since Monday.
jointpain6 days ago
For those who remember, my wife was partially diagnosed in France with an MPN after she ruptured her, what was enlarged spleen on may 1st. W...
Other cancer before MPN
BonnieJ7 days agoPOPULAR
Just curious, how many of you have ever had some other form of cancer prior to being diagnosed with an MPN?
Elab7 days ago
Hope you all feeling ok and drinking loads of water in this heat 🤪.
Does anyone know if we (MPN people) are getting NHS dental care f...
9 Replies1 Like
Dublin mpn meeting
kentuckyrain8 days ago
Anyone going this saturday? We are planning to go but not sure it will benefit us. We have been to a few of them, we are the parents of a ch...
Annastaunton8 days ago
I am wondering if anyone else experience droopy eyes?
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