Posts - MPN Voice | HealthUnlocked

MPN Voice

11,250 members•15,727 posts

All posts for November 2022

myelofibrosis

Does anyone on here know if mf should always be treated,main symptom is fatigue, slightly enlarged spleen and slight anaemia ( for 3 years)not sure about the...

Does anyone on here know if mf should always be treated,main symptom is fatigue,...

glyndale

•2 years ago

10 Replies

Superventricular tachycardia along side PV

Hello everyone I hope your all well 😊 I have been posting about my experience with STV and just wanted to update everyone. I was seen by cardiology yesterday...

Hello everyone I hope your all well 😊 I have been posting about my experience w...

Mauritiu

•2 years ago

4 Replies

myelofibrosis

well my et has progressed to mf,platelets normal ,wcc normal, hb slightly low spleen slightly enlarged, main symptom is fatigue. my score is low intermediate...

well my et has progressed to mf,platelets normal ,wcc normal, hb slightly low sp...

glyndale

•2 years ago

36 Replies

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Rising platelet count whilst on hydroxy

Hi there, please could I ask for some advise on my situation. I have been on hydroxycarbomide for a few years . It initially brought my platelet count right...

Hi there, please could I ask for some advise on my situation. I have been on hy...

UKZA

•2 years ago

8 Replies

currently travelling with Peg around Australia and NZ

After sending off for various medications bags to transport my 3 Peg jabs Ifound a cooler lunch bag best. I armed myself with plastic bags with zip seals so...

After sending off for various medications bags to transport my 3 Peg jabs Ifound...

Wyebird

•2 years ago

2 Replies

joint issues

anyone out there both with a history of blood clot and having ET? I am having increased issues with joint pain and recently tendonitis for 6 weeks. I know...

anyone out there both with a history of blood clot and having ET? I am having i...

IrishHiker

•2 years ago

9 Replies

ET and lumps?

hi, this is my first time posting and new to this site. I was diagnosed with ET in May 2020 after finding my platelets were high whilst pregnant with my...

hi, this is my first time posting and new to this site. I was diagnosed with ET...

Lena1992

•2 years ago

14 Replies

pre MF what to expect

I was recently told than the BMB indicated that I have pre MF rather than ET. I have grade 1 fibrosis. What can i expect to happen here? Does anyone else have...

I was recently told than the BMB indicated that I have pre MF rather than ET. I ...

Fjdjdjdjd

•2 years ago

14 Replies

how good is jakafi?? Pros and cons?

hi everyone I’m about to start taking jakafi due to tomorrow, any input/suggestions for pmf patient like me, with splenomegaly and portal vein thrombosis...

hi everyone I’m about to start taking jakafi due to tomorrow, any input/suggesti...

Dan39

•2 years ago

6 Replies

Do you blame your fatigue and brain fog more on hydroxyurea or ET (high platelet count)... which one and why?

Do you blame your fatigue and brain fog more on hydroxyurea or ET (high-platelet count)... which one and why? Hi I'm just starting on this site. I'm trying to...

Do you blame your fatigue and brain fog more on hydroxyurea or ET (high-platelet...

industrial

•2 years ago

9 Replies

myelofibrosis

Anyone diagnosed with mf and what are the main symptoms .Thanks.

glyndale

•2 years ago

13 Replies

Hydroxycarbamide

Been on Hydroxycarbamide for a few months I feel terrible, sore heads, mouth ulcers, fatigue ! When I have mentioned this to my consultant they don't seem...

Been on Hydroxycarbamide for a few months I feel terrible, sore heads, mouth u...

indy22

•2 years ago

33 Replies

Diverticulitis

Currently suffering a really painful bout of diverticulitis, I guess it being inflammatory this condition makes it worse. Could see a gp, got to a nurse who at...

Currently suffering a really painful bout of diverticulitis, I guess it being in...

ciye

•2 years ago

10 Replies

Bone marrow biopsy frequency ?

I had my first nine marrow biopsy 6 years ago now. The emergency consultant I saw then did BMB to get baseline levels as well as confirmation of E.T However I...

I had my first nine marrow biopsy 6 years ago now. The emergency consultant I sa...

Lainy1

•2 years ago

3 Replies

Platelet Count Fluctuations with ET - what to expect, ways to lower them naturally?

Hi There, First post. Joined to club recently with a Jak2 / ET diagnosis. Took an elective men's health blood panel almost a year ago which identified...

Hi There, First post. Joined to club recently with a Jak2 / ET diagnosis. To...

Carini

•2 years ago

23 Replies

Could Pegasys cause hair thinning?

Hi all, I was diagnosed with MF in January 2021. I have been on 45mg of Pegasys weekly since then. I have noticed just recently that my hair appears to be...

Hi all, I was diagnosed with MF in January 2021. I have been on 45mg of Pegasys ...

Hidden

•2 years ago

31 Replies

Did HU reduce your headaches?

There may be a post about this, but I could not find. I’m just beginning HU, 500 mg 1 a day. I have ET JAK2 +. Until this point I’ve been on aspirin only....

There may be a post about this, but I could not find. I’m just beginning HU, 50...

EANgardengirl

•2 years ago

37 Replies

Travel cooler for Pegasys

Heading out on a long haul flight. LA to Sydney (and then some...). Bought this little trinket for traveling with refrigeration-required medication...

Heading out on a long haul flight. LA to Sydney (and then some...). Bought thi...

Emmyroos

•2 years ago

39 Replies

NAC benefits and side effects

Dear all, I am currently investigating the possibility to start an anti-inflammatory treatment based on NAC (on top of Besremi). Looking over the NAC side...

Dear all, I am currently investigating the possibility to start an anti-inflamma...

Dane12

•2 years ago

11 Replies

New Study re: Myelofibrosis: Predictors of Anemia Response to Momelotinib Therapy in Myelofibrosis and Impact on Survival

Synopsis: TAKE-HOME MESSAGE In this retrospective study, the authors identified the predictors of anemia response and its impact on outcomes in 72 patients...

Synopsis: TAKE-HOME MESSAGE In this retrospective study, the authors identifie...

PhysAssist

•2 years ago

10 Replies

A Vote of Confidence in the new Drug Bomedemstat

In the latest news: "Merck has announced it will acquire biopharma Imago BioSciences, Inc for around $1.35 billion in total equity value, to facilitate...

In the latest news: "Merck has announced it will acquire biopharma Imago BioSci...

EPguy

•2 years ago

16 Replies

Rusfertide (for reducing Hb/HCT) is making progress

A small update on trials from Sept: "...These data (various phase 2 trials) provide support for the ongoing, randomized phase 3 VERIFY trial (NCT05210790),...

A small update on trials from Sept: "...These data (various phase 2 trials) pr...

EPguy

•2 years ago

1 Reply

Durability of Ruxolitinib for PV, Dr V in Targeted Oncology interview

A few weeks ago there was some discussion on there was some discussion on her re the durability of Rux for PV. Below is a answer to that from Dr V in a...

A few weeks ago there was some discussion on there was some discussion on her re...

ainslie

•2 years ago

8 Replies

Peg side effects

Hi I have been on peg for 2 months. Most of the side effects have disappeared except my dry skin on face. I take my Peg on Monday and within a few days my skin...

Hi I have been on peg for 2 months. Most of the side effects have disappeared ex...

JeniMac

•2 years ago

30 Replies

Hydroxy Blood Numbers Experiences

Hi, I was diagnosed with PV in February this year. Started venesections and aspirin straight away. I have just started on HU and wondered if anyone can...

Hi, I was diagnosed with PV in February this year. Started venesections and a...

Hocus58

•2 years ago

18 Replies

Shingrix Vaccine

Any issues with getting this vaccine for mpn patients? Has anyone gotten it?

Jamesxyz

•2 years ago

14 Replies

Abnormal platelets

Can any point me in the right direction. I thought had downloaded a leaflet from a link on an other post detailing mpns. It shows how our platelets look...

Can any point me in the right direction. I thought had downloaded a leaflet from...

ciye

•2 years ago

2 Replies

Curcumin

Hello, I have read on this forum that taking curcumin is excellent for inflammation. Does anyone know if taking curcumin thins the blood or increased your...

Hello, I have read on this forum that taking curcumin is excellent for inflammat...

taytokavo

•2 years ago

9 Replies

high platelet’s

For those who have elevated platelets, is that the only thing in your blood workout of range? For those of you who were diagnosed with ET with mutations, how...

For those who have elevated platelets, is that the only thing in your blood work...

Twinnotes

•2 years ago

22 Replies

Interesting Presentation by Dr Silver re long term survival on Interferons

https://www.vjhemonc.com/video/interferon-in-polycythemia-vera-long-term-experience-from-a-single-center/ He says he would take Colchicine as well as...

https://www.vjhemonc.com/video/interferon-in-polycythemia-vera-long-term-experie...

Paul123456

•2 years ago

11 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for November 2022

myelofibrosis

Superventricular tachycardia along side PV

myelofibrosis

Rising platelet count whilst on hydroxy

currently travelling with Peg around Australia and NZ

joint issues

ET and lumps?

pre MF what to expect

how good is jakafi?? Pros and cons?

Do you blame your fatigue and brain fog more on hydroxyurea or ET (high platelet count)... which one and why?

myelofibrosis

Hydroxycarbamide

Diverticulitis

Bone marrow biopsy frequency ?

Platelet Count Fluctuations with ET - what to expect, ways to lower them naturally?

Could Pegasys cause hair thinning?

Did HU reduce your headaches?

Travel cooler for Pegasys

NAC benefits and side effects

New Study re: Myelofibrosis: Predictors of Anemia Response to Momelotinib Therapy in Myelofibrosis and Impact on Survival

A Vote of Confidence in the new Drug Bomedemstat

Rusfertide (for reducing Hb/HCT) is making progress

Durability of Ruxolitinib for PV, Dr V in Targeted Oncology interview

Peg side effects

Hydroxy Blood Numbers Experiences

Shingrix Vaccine

Abnormal platelets

Curcumin

high platelet’s

Interesting Presentation by Dr Silver re long term survival on Interferons

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