Hydroxy To Pegasys
RafflesUK2 hours 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 ...
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Rux and Hydroxy
Graham76943 hours 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...
Cando6720 hours 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 day ago
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
rkhabtec2 days ago
Was wondering if this is common
Thank You for your replies
Rose_592 days ago
Thanks to all of you who replied to my recent Post regarding PV and Leg Pain/Weakness.
I'm sorry to hear that you too experience Leg pain...
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Hydroxyurea and sun
ChattyPanda2 days ago
WHY is it so important to wear sunscreen and sunglasses while taking hydroxyurea???
Anybody here being treated in North Wales?
jointpain2 days ago
Would like to ask about the treatment one can expect here in North Wales. Though my wife is getting treatment for her Myelofibrosis, we are ...
So much for BUPA medical
Mardihel3 days ago
I read with much interest the posts, peoples symptoms, platelet counts, side effects etc
What I am really annoyed about is the fact that I ha...
14 Replies2 Likes
Is hair loss a given?
WileyFrench3 days ago
Hi all - I know that hair loss/thinning is listed as a possible side effect of taking hydroxyurea. I immediately latched on to the word “pos...
Voice MPN ET Blood Tracker results
AnnaGarcia4 days ago
Just sharing some of my blood results that I downloaded on the MPN Voice ET Tracker results. Viewing these I suspect I may have had my ...
Pippa634 days ago
Hi everyone. Thankyou so much for the replies and discussion on my question about massage, Ive learnt a lot I will be asking g my heamotol...
Sporting events doctors sign off
Jasbak664 days ago
Hello Mpn friends I’m looking to do a cycling holiday next year and noticed a lot require doctors sign off has anyone else had an experience...
Low BUN/creatinine ratio
ChattyPanda4 days ago
My BUN/creatinine ratio was below normal on my last blood test. It has never been abnormal before. I started hydroxyurea about a month ago. ...
Pippa635 days agoPOPULAR
Is it correct that we can't have a massage and if so why? I get very stressed and find a massage relaxes me and I forget ever...
28 Replies1 Like
ASH paper re younger MPN patients, dx age <= 40
Simon966 days ago
Hi younger MPN'ers,
I do not very often come across papers aimed at younger MPN patients so thought I would highlight this one that is being ...
9 Replies12 Likes
Allow myself to introduce myself...
Not2bad6 days agoPOPULAR
I was diagnosed at almost 48 in January 2018.
In November 2017 I went to the GP with pins and needles in my feet and got a full blood work ...
31 Replies9 Likes
Loubprv6 days agoPOPULAR
I’ve buddied around 30 newly diagnosed ladies all of whom delightful.
Recently I’ve had a couple of queries re bleeding gums, whi...
31 Replies5 Likes
Get ready with the 'DELETE' key if you are getting fed up of my researching.................... but for others, this is interesting!
Ovingite7 days ago
Well, I have got the bit well and truly between my teeth in trying to understand fatigue, and why it hits so many of us so badly. Earlier, I...
15 Replies14 Likes
letter from health board Scotland
Scottishterrier7 days ago
Hi Guys the other weeki went to book my appointment for flu jab and receptionist said is this you received your letter i got mine she was ...
12 Replies2 Likes
Grumpyfairy7 days ago
Hi, I posted a few weeks ago about pains in side and chest, and was advised to have a scan on my spleen. I’ve had one and was told my spleen...
Kelly29 days agoPOPULAR
Hi, is hair loss related to Hydroxyurea? I saw today that I have a receding hair line. Is there anything we can do about that? Vitamins mayb...
38 Replies1 Like
Second experience of a bone marrow trephine biopsy much better than first
Rachelthepotter9 days ago
I’ve just got back home after having my second trephine bmb - thats the kind where they take a core of bone as well as a sample of marrow. ...
9 Replies6 Likes
Re fatigue data
Ovingite9 days ago
Many thanks to all of you who responded to my earlier post, which encouraged me to start looking further for info on fatigue in MPN patients...
8 Replies13 Likes
Hi Bone Marrow lymphoma cancer
rkhabtec9 days ago
Hi my niece was diagnosed with tjus will Jakafi help her thanks
Interferon advice please
jazzyb9 days ago
I've had PV for eleven years and recently started on Interferon Peg. I have had two injections so far (dose 90 per week) with no improvement...
Mackydee12310 days ago
Just out from seeing the Prof, my platelets have been stable now for 3 months settled on 352, she is happy with my reaction to Pe...
5 Replies3 Likes
Re side effects of hydroxycarbamide
Ovingite10 days ago
Some 6 years ago you asked for feedback on the side effects of hydroxycarbamide and got a huge number of responses, and I notice that...
Matcha Green Tea!!
Hope everyone is keeping well! I’ve just discovered Match Green Tea and it’s doing wonders for my stamina and brain power in work. I...
10 Replies1 Like
Calr deletion with normal platelets?
MrMaxx11 days ago
I have a follow up appointment on nov 8 with hem/oncologist but I was able to read my blood test of my portal. WBC still elevated at 17.1 al...
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