Posts - MPN Voice | HealthUnlocked

MPN Voice

10,647 members • 14,731 posts

All posts for October 2023

Turmeric

I have been amazed at the effect taking turmeric has had on the amount of pain I experience in my hands and how quickly this has happened. (Yes, I know about...

I have been amazed at the effect taking turmeric has had on the amount of pain I...

Mwalimu

•9 months ago

24 Replies

COVID vaccine - old stock in use in the UK

Apparently, in order to save money, the British government decided to use the old stock of COVID vaccines, and they were doing so until a week (or so) ago....

Apparently, in order to save money, the British government decided to use the ol...

flamboyant_hawking

•9 months ago

28 Replies

Pregnancy and ET

Has anyone gotten pregnant with ET while still being treated? I was told the only medication you can take is Pegasys if I want to get pregnant. Curious about...

Has anyone gotten pregnant with ET while still being treated? I was told the onl...

Zeppelin11

•9 months ago

2 Replies

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HCT above average

Hey, could any one advise if HCT can be dropped / managed with venesection ? I've noticed on a random blood test from GP few months ago my hematocrit was......

Hey, could any one advise if HCT can be dropped / managed with venesection ? I'...

kamiilos

•9 months ago

3 Replies

Autoimmune issues -- should I try Pegasys?

I read some of the posts here on a daily basis, but don't post very often -- mainly due to lack of time since I'm working full-time and trying to manage my...

I read some of the posts here on a daily basis, but don't post very often -- mai...

blue_reader

•9 months ago

8 Replies

Overdue Update

Hello everyone. I am not sure when I last posted my health situation but think it was mentioning abdominal pains and querying whether Hydroxycarbamide could be...

Hello everyone. I am not sure when I last posted my health situation but think i...

azaelea

•9 months ago

11 Replies

How long have you had to wait for a venesection?

I've been told by my consultant that I need a venesection and I'll hear from the hospital in due course. (I tend to need it done 1-2 times per year). As I've...

I've been told by my consultant that I need a venesection and I'll hear from the...

MarkD6701

•9 months ago

10 Replies

A bit worried

I had some blood test results through the post after a recent telephone appointment. I’ve been on Pegasys for a few years and with ET CALR2. Platelets are well...

I had some blood test results through the post after a recent telephone appointm...

hall2

•9 months ago

7 Replies

Investigations

Hi everyone, ET and JAK2 positive, having a Bone Marrow Biopsy on the 24/10 and yesterday received an appointment letter for abdo/pelvis CT on 16/10. I’ve...

Hi everyone, ET and JAK2 positive, having a Bone Marrow Biopsy on the 24/10 and ...

Carol0925

•9 months ago

14 Replies

claiming benefits

hi has anyone claimed benefits like pip while having a mpn

Badger1

•9 months ago

15 Replies

ET and Hydroxycarbamide

I took my first hydroxycarbamide about an hour ago just had appointment with haematologist yesterday. She was excellent and explained the condition ET....

I took my first hydroxycarbamide about an hour ago just had appointment with ha...

Maxpenny

•9 months ago

54 Replies

Spelling

Note to self, need to check spelling when ranting!!I mean 3 appointments with 3 different Heamtologists really with new patient

Note to self, need to check spelling when ranting!!I mean 3 appointments with 3 ...

Spanelmad

•9 months ago

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ET and pregnancy

Hello, this is my first post so hello to everyone. I'm 36 years old. Last September, I was diagnosed with the JAK2v617f mutation. I am 28 weeks pregnant and...

Hello, this is my first post so hello to everyone. I'm 36 years old. Last Septem...

bunia8891

•9 months ago

6 Replies

Anyone else being seen at Sutton branch of the Royal Marsden Hospital? MPN clinic is on Mondays

Hi The MPN clinic ( Mondays) at the Sutton branch of the Marsden is now using the new building funded by the RMH charity ,Oak Cancer Centre. Much more...

Hi The MPN clinic ( Mondays) at the Sutton branch of the Marsden is now using...

Rachelthepotter

•9 months ago

1 Reply

switch from jakafi (RUX) to Ojjara/momelotinib

has anyone made the switch yet ? The doctor is planning to switch my husband over. He is 74 yrs old with high risk MF. Had taken HU since 2020 then switched to...

has anyone made the switch yet ? The doctor is planning to switch my husband ove...

Bainbridge

•9 months ago

6 Replies

beta alanine: hives/itch?

any folks develop a bit of hives/itching while on BA? different than the “tingling” sensation - almost like temporary bug bites instead.

any folks develop a bit of hives/itching while on BA? different than the “tingli...

TwinMom88

•9 months ago

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low neutrophils on pegysys

my white cell count have been dropping over the last new months. Was on 45 ug every 10 days. Neutrophils now 1.2. Haematologist has advised changing to every...

my white cell count have been dropping over the last new months. Was on 45 ug e...

Sprat19

•9 months ago

6 Replies

Write a will

Can anyone direct me to write a will I am 29 years old and think this could be important

Can anyone direct me to write a will I am 29 years old and think this could be i...

Avamia94

•9 months ago

13 Replies

Pegasus and hematocrit spike

Hi just wondering if anyone else has experienced this. I started peg 2 months ago 45mg every 2 weeks all seemed to go well HCT and platlets lowered, platlets...

Hi just wondering if anyone else has experienced this. I started peg 2 months a...

Cityreach

•9 months ago

23 Replies

Peginterferon

I'm wondering if anyone else is struggling with poor appetite while being o peginterferon.I have been on it for 4 years diagnosed with MF. The dose has...

I'm wondering if anyone else is struggling with poor appetite while being o peg...

caroline_284

•9 months ago

13 Replies

Ruxolitinib (Jakafi) ; A generic ?

When will this drug be off patent or available as a generic? Any ideas?

Innessant

•9 months ago

1 Reply

Got an appointment!

Very pleased to say I’ve got an appointment on 7th November at Haematology at Guy’s London. Thanks to asking my GP to email as the letter via the mail from the...

Very pleased to say I’ve got an appointment on 7th November at Haematology at Gu...

lizzziep

•9 months ago

40 Replies

kennel cough and hydroxycarbamide

can anyone tell me if it’s ok for my dog to have kennel cough vaccine with me being on hydroxy?

can anyone tell me if it’s ok for my dog to have kennel cough vaccine with me be...

Cokopops

•9 months ago

2 Replies

vitamins

consultant just told me vit c and vit d I can take with h no issues

Cat1001954

•10 months ago

8 Replies

Am I at a higher risk from Covid ?

Hi, Ive seen on MPN voice and here that people with an MPN are at a higher risk from Covid. I have ET which is currently being treated with Pegasys and...

Hi, Ive seen on MPN voice and here that people with an MPN are at a higher risk ...

Scarlett500

•10 months ago

8 Replies

Anyone else with consistently rising neutrophils?

My neutrophils have steadily risen from 67 to 78.2% over one year while my lymphocytes have decreased from 17.2 to 12.1%. My overall WBC went from 9 to 11.4....

My neutrophils have steadily risen from 67 to 78.2% over one year while my lymph...

Lena70

•10 months ago

9 Replies

Pegasys and autoimmune response

I have been taking Pegasys for little less than a year at a fairly low dose. I had some warning signs of migraine (painful to move head) a few times, which I...

I have been taking Pegasys for little less than a year at a fairly low dose. I...

Smithjoa

•10 months ago

9 Replies

Vitamins and Hydrea ?

Hi all, I am still trying to get an appointment with an MPN specialist. In the meantime, I am due to start Hydrea in 2 weeks. I was hoping to take some vitamns...

Hi all, I am still trying to get an appointment with an MPN specialist. In the m...

JustKeepSw1mming

•10 months ago

24 Replies

Ruxolitinib and healing

I wonder if Ruxolitinib prevents soft tissue healing? Anyone able to comment?

I wonder if Ruxolitinib prevents soft tissue healing? Anyone able to comment? ...

FinnMcCoull

•10 months ago

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Result, jabs.menopause

Hi all Had my next appointment my platelet count 758 going stay On aspirin 2 day for now next appointment 6 weeks , had my flu/covid jab 2 weeks ago , at...

Hi all Had my next appointment my platelet count 758 going stay On aspirin 2 da...

Jody00

•10 months ago

4 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for October 2023

Turmeric

COVID vaccine - old stock in use in the UK

Pregnancy and ET

HCT above average

Autoimmune issues -- should I try Pegasys?

Overdue Update

How long have you had to wait for a venesection?

A bit worried

Investigations

claiming benefits

ET and Hydroxycarbamide

Spelling

ET and pregnancy

Anyone else being seen at Sutton branch of the Royal Marsden Hospital? MPN clinic is on Mondays

switch from jakafi (RUX) to Ojjara/momelotinib

beta alanine: hives/itch?

low neutrophils on pegysys

Write a will

Pegasus and hematocrit spike

Peginterferon

Ruxolitinib (Jakafi) ; A generic ?

Got an appointment!

kennel cough and hydroxycarbamide

vitamins

Am I at a higher risk from Covid ?

Anyone else with consistently rising neutrophils?

Pegasys and autoimmune response

Vitamins and Hydrea ?

Ruxolitinib and healing

Result, jabs.menopause

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