Posts - MPN Voice | HealthUnlocked

MPN Voice

10,647 members • 14,730 posts

All posts for October 2023

Oh dear! it's that 'senior moment' time again

Oooops. Yesterday I posted asking if anyone had issues with long term use of Lisinopril, but what I really wanted was feedback on long term usage of...

Oooops. Yesterday I posted asking if anyone had issues with long term use of Li...

Ovingite

•9 months ago

8 Replies

Any help with hair loss dues to low iron and PV

Hi All, I was diagnosed with PV about 4 years ago and recently started on Hydrea (1 x 500mg tab daily). I have tolerated it really well but have some hair...

Hi All, I was diagnosed with PV about 4 years ago and recently started on Hyd...

Woodcut

•9 months ago

7 Replies

Fatigue

Hi everyone. I got diagnosed with ET with an MPL gene mutation in December 2021. I take 75mg of aspirin a day. My platelet count hovers around 500 and goes up...

Hi everyone. I got diagnosed with ET with an MPL gene mutation in December 2021....

LittleMsTired

•9 months ago

21 Replies

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Lisonopril safety?

Have any of you good people been on Lisinopril for several years? If so, have you suffered any side effects? I've been taking them for 4 years (protection...

Have any of you good people been on Lisinopril for several years? If so, have y...

Ovingite

•9 months ago

6 Replies

shingles vaccination

hello. Has anyone had the shingles vaccination, I have PV and on Hydroxycarbamide. Wondering if to have it or not. take care x

hello. Has anyone had the shingles vaccination, I have PV and on Hydroxycarbamid...

Maisie10

•9 months ago

21 Replies

Rux on NHS UK

Hi All I am due to start Ruxolinitib soon. However my haematologist is unsure if I can get this on the NHS. I am intermediate 1 according to DIPPS plus. I...

Hi All I am due to start Ruxolinitib soon. However my haematologist is unsure i...

artydutch

•9 months ago

4 Replies

Hematologist questions

I have ET JAK 2 and I always feel like the dr is rushing me when I see him. He looks at my numbers, reviews my prescription and then stands up and walks...

I have ET JAK 2 and I always feel like the dr is rushing me when I see him. He l...

Smoothie2020

•9 months ago

7 Replies

Quick Question re. Taking Hydroxycarbamide.

Hi everyone, just to ask those of you with ET and taking HU, when taking two 500 mg capsules in a day, do you take them both together or at separate times in...

Hi everyone, just to ask those of you with ET and taking HU, when taking two 500...

azaelea

•9 months ago

23 Replies

dizzy and feeling faint

Husband is high risk MF 74 yrs old and currently on Jakifi. today after my husband labs we stopped at the store to pick up some groceries and he had a...

Husband is high risk MF 74 yrs old and currently on Jakifi. today after my husb...

Bainbridge

•9 months ago

3 Replies

Alternative parts of body for a venesection?

Had my venesection today. However, as I have CP I always have to use my strongest arm as I can't properly straighten the other and keep it still enough. It...

Had my venesection today. However, as I have CP I always have to use my stronges...

MarkD6701

•9 months ago

9 Replies

bone marrow edema

Hi Everyone Has anyone had a bone marrow edema? I have it in one foot and ankle. I went to an orthopedic surgeon, because I had pain walking. A MRT was take...

Hi Everyone Has anyone had a bone marrow edema? I have it in one foot and ankl...

StellaPFM

•9 months ago

5 Replies

Bone pain or it is muscle pain?

Hi there. I've been on hydroxy since diagnosis for ET in July 2022. In Dec 2022, I had a painful coccyx and sacrum area. This extended to painful hips and...

Hi there. I've been on hydroxy since diagnosis for ET in July 2022. In Dec 202...

AgnethaF

•9 months ago

14 Replies

Bone pain

morning all does anyone else get really uncomfortable bone pain with ET I have for years had pain in thigh and upper arm bones sometimes so sore. My discomfort...

morning all does anyone else get really uncomfortable bone pain with ET I have f...

Tipsy2023

•9 months ago

28 Replies

Besremi clinical trial opportunity

I've was diagnosed with Jak2+ ET in March, though the BMB report stated they couldn't exclude pre-fibrotic myelofibrosis as a possible differential. It's been...

I've was diagnosed with Jak2+ ET in March, though the BMB report stated they cou...

WRLM

•9 months ago

13 Replies

PV - Folic Acid and Vit D

Hi Please excuse if this has been asked before, I’m sure it has but can’t find the post 😬 I have PV and had blood done at Dr recently and was told I needed...

Hi Please excuse if this has been asked before, I’m sure it has but can’t find ...

Hocus58

•9 months ago

4 Replies

Vensection

I have had E.T Jak 2 positive for over 3 year now, I have now had 4 venesectlons as my hemocrit slightly high, does this happen with E.T? I asked hematologist...

I have had E.T Jak 2 positive for over 3 year now, I have now had 4 venesectlons...

doglover49

•9 months ago

18 Replies

Effect of Covid on Platelets

I’ve had thrombocythaemia for many years and it’s been well controlled initially by Hydroxycarbamide and in more recent years by Hydroxycarbamide and...

I’ve had thrombocythaemia for many years and it’s been well controlled initiall...

AnneMargaretMary

•9 months ago

6 Replies

Ruxolitinib not working so well

I was diagnosed with Myelofibrosis Stage 2 this summer. I was put on Ruxolitinib and at first it worked very well but now my platelets have shot up to 609...

I was diagnosed with Myelofibrosis Stage 2 this summer. I was put on Ruxolitini...

Searcher56

•9 months ago

2 Replies

Starting Interferon - advice please

Hi everyone.. I would really appreciate some advice and benefit of your experiences. I am just about to start on interferon, lowest dose fortnightly 45mcg....

Hi everyone.. I would really appreciate some advice and benefit of your experi...

Mrs_Average

•9 months ago

28 Replies

Generic version of Jakafi for PV ?

Expiry of Jakafi (Rux ) Patent # 7,598,257 (Incyte) Patent expiration date is : 24th December 2027 Patent use: FOR TREATMENT OF POLYCYTHEMIA VERA (PV) IN...

Expiry of Jakafi (Rux ) Patent # 7,598,257 (Incyte) Patent expiration date is...

Innessant

•9 months ago

3 Replies

Itchy skin problem

Dear all, i haven't been here for long time, have been looking after my sister she has incurable bowel cancer, and I have been overwhelmed with tremendous...

Dear all, i haven't been here for long time, have been looking after my sister...

Lifam

•9 months ago

38 Replies

Mouth ulcers

Hi everyone now on my fourth week of HU and another side effect.Any top tips for mouth ulcers would be appreciated.

Hi everyone now on my fourth week of HU and another side effect.Any top tips for...

Spanelmad

•9 months ago

46 Replies

Outcome after 4 years of weekly Pegasys injections for PV.

Hello everyone, This is now 4 years since I was diagnosed with a quite proliferative form of PV (JAK2 at 83%, hematocrit 67%, etc…). After 4 years of weekly...

Hello everyone, This is now 4 years since I was diagnosed with a quite prolifer...

Manouche

•9 months ago

21 Replies

NICE Final Guidance on Ruxolitinib for the treatment of Polycythaemia Vera

We are delighted to announce that NICE (the National Institute for Health and Care Excellence) has recently released Final Guidance recommending Ruxolitinib...

We are delighted to announce that NICE (the National Institute for Health and Ca...

Mazcd

Partner•9 months ago

15 Replies

Temperature Issues in Besremi due to poor packaging during shipping...

Hi all, I may have mentioned this before, but while my response to the maximal dosage of Besremi has been measurable in other ways, my Hct control has been...

Hi all, I may have mentioned this before, but while my response to the maximal ...

PhysAssist

•9 months ago

6 Replies

Laparoscopic Surgery and PV

I am 67 years old and have had PV for 3 years. I am on 1,000 mg Hydroxyurea and one low dose aspirin per day. I have to have laparoscopic surgery to remove...

I am 67 years old and have had PV for 3 years. I am on 1,000 mg Hydroxyurea and...

Sheena2020

•9 months ago

19 Replies

The role of JAK2V617F allele burden in PV

Conclusion « The knowledge of the JAK2V617F mutation in relation to PV has allowed both physicians and patients to understand that risk is not inherently...

Conclusion « The knowledge of the JAK2V617F mutation in relation to PV has allo...

Manouche

•9 months ago

3 Replies

Beta-2 microglobulin

Hi,Has anyone experienced an increase in Beta-2 microglobulin value during the treatment with interferon? If yes, has been confirmed by MD that it is caused...

Hi,Has anyone experienced an increase in Beta-2 microglobulin value during the t...

Dane12

•9 months ago

5 Replies

cataract surgery with MPN any one else had this done

I’m going to have cataract surgery and I am very nervous and baca use susceptible to infection.So please any advice .Thankyou in advance

I’m going to have cataract surgery and I am very nervous and baca use susceptibl...

Polish1

•9 months ago

18 Replies

Eye floaters

Greetings friends, I was diagnosed in early 2018 with ET Jak2+ following a mild heart attack. Two months ago my MPN specialist increased Hydroxyurea from 5000...

Greetings friends, I was diagnosed in early 2018 with ET Jak2+ following a mild...

mbr8076

•9 months ago

12 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for October 2023

Oh dear! it's that 'senior moment' time again

Any help with hair loss dues to low iron and PV

Fatigue

Lisonopril safety?

shingles vaccination

Rux on NHS UK

Hematologist questions

Quick Question re. Taking Hydroxycarbamide.

dizzy and feeling faint

Alternative parts of body for a venesection?

bone marrow edema

Bone pain or it is muscle pain?

Bone pain

Besremi clinical trial opportunity

PV - Folic Acid and Vit D

Vensection

Effect of Covid on Platelets

Ruxolitinib not working so well

Starting Interferon - advice please

Generic version of Jakafi for PV ?

Itchy skin problem

Mouth ulcers

Outcome after 4 years of weekly Pegasys injections for PV.

NICE Final Guidance on Ruxolitinib for the treatment of Polycythaemia Vera

Temperature Issues in Besremi due to poor packaging during shipping...

Laparoscopic Surgery and PV

The role of JAK2V617F allele burden in PV

Beta-2 microglobulin

cataract surgery with MPN any one else had this done

Eye floaters

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