Posts - MPN Voice | HealthUnlocked

MPN Voice

10,784 members • 14,980 posts

All posts for January 2024

Advances in Research | Emerging MPN Therapies on the Horizon

This is a brief summary from October of 2023 of the promising progress being made in MPN treatment options. For anyone who has not seen it, it is worth...

This is a brief summary from October of 2023 of the promising progress being ma...

hunter5582

•9 months ago

19 Replies

Pegasus causing hair thinning

Hi, I was wondering if anyone has any tips on pegasus and hair thinning. I know it is a side effect from the medication,I have been taking it since Aug 23 and...

Hi, I was wondering if anyone has any tips on pegasus and hair thinning. I know ...

Cityreach

•9 months ago

48 Replies

Eye problems with Pegasys for ET

I began Pegasys and immediately had severe dry eyes in the mornings. Three weeks into treatment my vision worsened. I saw a retina specialist and have been...

I began Pegasys and immediately had severe dry eyes in the mornings. Three week...

Shopgirl10128

•9 months ago

9 Replies

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Meet up at Denbies Winery near Dorking in Surrey on Sunday 14 th from 10.30

Hi. Regret that I’m not likely to be at the meetup, even tho I suggested it, because Covid has caught up with me and despite getting antivirals- long hassle-...

Hi. Regret that I’m not likely to be at the meetup, even tho I suggested it, bec...

Rachelthepotter

•9 months ago

5 Replies

Pegasys for MF transitioning from hydroxycarbamide

My darling wife, had her appointment today, and her blood is well below par her Hgb is 82 hematocrit 0.27, platelets 213 which is good, white cells 45. The...

My darling wife, had her appointment today, and her blood is well below par her...

jointpain

•9 months ago

3 Replies

bone pain

I have been diagnosed with PV and jak2 positive. I have been asked by doctors if I am experiencing bone pain and had not been. Recently, I have aches in my...

I have been diagnosed with PV and jak2 positive. I have been asked by doctors i...

dgar

•9 months ago

4 Replies

Shingles

Anyone else ever had Shingles .First time ever..its so painful. I did contact the Gp straight away and they prescribed antiviral medication..I took this...

Anyone else ever had Shingles .First time ever..its so painful. I did contact t...

heathermc

•9 months ago

7 Replies

venesection at home?

might anyone please have any experience of a venesection at home for a PRV patient unable to access usual clinic in London due to mobility problems (unrelated...

might anyone please have any experience of a venesection at home for a PRV pati...

LauraH1982

•9 months ago

9 Replies

Jak 2 exon 12

My rbc and hemoglobin and iron are all high but my mcv hct mch mchc are all. Within range. I tested negative for jak 2 test last year 2022. But because my rbc...

My rbc and hemoglobin and iron are all high but my mcv hct mch mchc are all. Wit...

Hidden

•9 months ago

15 Replies

Metformin reduced Long Covid

Metformin is an old but well established diabetes drug. This study found a substantial benefit with metformin to prevent long covid. The attached plot shows...

Metformin is an old but well established diabetes drug. This study found a subs...

EPguy

•9 months ago

4 Replies

ET :Hydroxy to Pegasys

Hi All, I've been on hydroxy for 3 years and gained a belly and 4kg over that period...grrr! As someone who always works hard to remain slim and fit, I find...

Hi All, I've been on hydroxy for 3 years and gained a belly and 4kg over that ...

Goosebumps52

•9 months ago

10 Replies

ET: Changing from HU to Jakafi or an Interferon treatment

Hello everyone, I'd be really grateful for any guidance / advice on the following: ET / JAK2 were diagnosed 10 years ago following a stroke (fortunately...

Hello everyone, I'd be really grateful for any guidance / advice on the followi...

Bodensee

•9 months ago

29 Replies

Itching for answers.... thankyou!

(Me = 80/JAK2 /ET/Hydroxycarbamide for 13years) I am very grateful to everyone that has replied to my list of queries about itching/pruritis. I have been...

(Me = 80/JAK2 /ET/Hydroxycarbamide for 13years) I am very grateful to everyone ...

quanglewangle

•9 months ago

8 Replies

Chest pains & hypertension due to Interferon or Hydrea?

Hi all, My best wishes for a happy and healthier New Year to all you amazing and insperational people on this group! :) I wanted to ask if anybody else might...

Hi all, My best wishes for a happy and healthier New Year to all you amazing and...

JustKeepSw1mming

•9 months ago

16 Replies

blood transfusions

My husband has high risk MF and takes RUX/jackifi which he started last March since his disease has progressed and HU did not work for him any longer. He...

My husband has high risk MF and takes RUX/jackifi which he started last March ...

Bainbridge

•9 months ago

6 Replies

Vitamins or supplement suggestions

Hi, any suggestions will be appreciated.. Looking to see what people are taking & finding beneficial vitiman/supplement wise. I’m taking 10g HU weekly and...

Hi, any suggestions will be appreciated.. Looking to see what people are taking...

RadRuby

•9 months ago

9 Replies

My MPN family need help/advice for natural way to treat minor Osteoporosis.

Happy New Year to you all and may it be a great one. I recently had a Dexa Scan and result is minor of Osteoporosis I guess that would be Osteopenia....

Happy New Year to you all and may it be a great one. I recently had a Dexa Scan...

light

•9 months ago

18 Replies

Pegasys is applying for formal approval in MPN treatment

Dear friends, I came across a EMA document recently and found that Pegasys is applying for indication extension to PV and ET. It provides, on page 53:...

Dear friends, I came across a EMA document recently and found that Pegasys is ap...

TimothyHLuff

•9 months ago

17 Replies

Itching for answers....

I was diagnosed with Essential Thrombocythemiain 2010, have been on Hydroxycarbamide ever since. A bit fed up with the numerous side effects of HU...

I was diagnosed with Essential Thrombocythemiain 2010, have been on Hydroxyc...

quanglewangle

•9 months ago

11 Replies

Clinical Trial Exceed ET

I have approached applying to participate in this clinical Trial. It is to determine the efficacy of using Ropeginterferon alfa-2b-njft for the treatment of...

I have approached applying to participate in this clinical Trial. It is to deter...

dogsandhorses

•9 months ago

48 Replies

can we develop fibromyalgia with this blood disease

Hi all and a happy new year… I just wanted to get any feed back from anyone that may have found out or been diagnosed with Fibromyalgia after having their MPN...

Hi all and a happy new year… I just wanted to get any feed back from anyone tha...

Grendall

•9 months ago

1 Reply

Covid

Two members of my family have Covid.. My mum is suffering from ET. She bever got vaccinated cos she got scared at that time due to many cases of thrombosis and...

Two members of my family have Covid.. My mum is suffering from ET. She bever got...

PHGR

•9 months ago

10 Replies

white cells rising

hi there, I’ve got PV and have always had white cells hovering around 10-12 but recently they went up to 15 and then today they are 19. Don’t often hear...

hi there, I’ve got PV and have always had white cells hovering around 10-12 bu...

Timjonze

•9 months ago

17 Replies

A thought for 2024…

Hi, a few months ago I posted re a still painful coccyx after breaking it in April. I asked general opinion about if it could be slow to heal because I take...

Hi, a few months ago I posted re a still painful coccyx after breaking it in Apr...

RazB

•9 months ago

8 Replies

Nummular headaches

Are Nummular headaches a symptom of essential Thrombocythemia. or Hydroxy? I get them off and on. I’m was prescribed gabapentin. I don’t like to take it...

Are Nummular headaches a symptom of essential Thrombocythemia. or Hydroxy? I ge...

Winchie

•9 months ago

8 Replies

Daisy-May

Hi need some advice about little red dots on my legs I've read it could be petechae I'm really worried about it does anyone else suffer from have this

Hi need some advice about little red dots on my legs I've read it could be petec...

Daisy-May

•9 months ago

14 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for January 2024

Advances in Research | Emerging MPN Therapies on the Horizon

Pegasus causing hair thinning

Eye problems with Pegasys for ET

Meet up at Denbies Winery near Dorking in Surrey on Sunday 14 th from 10.30

Pegasys for MF transitioning from hydroxycarbamide

bone pain

Shingles

venesection at home?

Jak 2 exon 12

Metformin reduced Long Covid

ET :Hydroxy to Pegasys

ET: Changing from HU to Jakafi or an Interferon treatment

Itching for answers.... thankyou!

Chest pains & hypertension due to Interferon or Hydrea?

blood transfusions

Vitamins or supplement suggestions

My MPN family need help/advice for natural way to treat minor Osteoporosis.

Pegasys is applying for formal approval in MPN treatment

Itching for answers....

Clinical Trial Exceed ET

can we develop fibromyalgia with this blood disease

Covid

white cells rising

A thought for 2024…

Nummular headaches

Daisy-May

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