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MPN Voice

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Keeping Pegasys injections cool and monitoring temp

Hi, I have recently been diagnosed with Erdheim-Chester Disease after being treated for many years for an MPN, (ET) I have started on Pegasys Interferon and...

Hi, I have recently been diagnosed with Erdheim-Chester Disease after being tre...

LeoTravels

•8 hours ago

2 Replies

allele burden VAF rising

just got my annual review results back MPL Et here. Pre Pegysus it was 28 % 2 years ago. Last year 30% this year 32%. Last year haematologist wasn’t...

just got my annual review results back MPL Et here. Pre Pegysus it was 28 % 2 ...

Sprat19

•16 hours ago

1 Reply

Covid vaccine reaction - further post

I want to thank all of you who answered my post. I really appreciate you reaching out to me. That is what makes this site invaluable - one is always...

I want to thank all of you who answered my post. I really appreciate you reachi...

Jelbea

•19 hours ago

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Choosing medication for PV/early MF

Hi Guys, I was diagnosed with PV in January and a BMB showed I have stage 1 Fibrosis on the bone marrow so I have been diagnosed with PV/early MF. My...

Hi Guys, I was diagnosed with PV in January and a BMB showed I have stage 1 Fi...

DarcyShepp

•23 hours ago

4 Replies

Reclast

Has anyone with ET received a Reclast infusion for osteoporosis? My endocrinologist recommended it as my lifestyle is good but my T scores continue to get...

Has anyone with ET received a Reclast infusion for osteoporosis? My endocrinolog...

Whitehair51

•2 days ago

3 Replies

Hip Replacement Update

Hip Replacement Update Good morning friends, just an update my surgery is scheduled for early June. I will be having it in the hospital where I receive...

Hip Replacement Update Good morning friends, just an update my surgery is sched...

Indigo42916

•2 days ago

10 Replies

Exray taken and shown to me.

Knee has arthritis in lower leg, shows all white. Side view looks like bone on bone. But the nurse showed it to me. She can't understand why my dexta taking so...

Knee has arthritis in lower leg, shows all white. Side view looks like bone on b...

mag123ben

•2 days ago

1 Reply

Covid vaccine reaction

When the vaccines for covid first appeared I received the AstraZeneca type. Two or three weeks later I ended up in hospital with unbearable headache and not...

When the vaccines for covid first appeared I received the AstraZeneca type. Two...

Jelbea

•3 days ago

28 Replies

Dr. MRI scan

Just back from Dr. Still no results with dexta , he is writing to them tonight. Having MRI Scan tomorrow on my knee. will wait and see what they say about my...

Just back from Dr. Still no results with dexta , he is writing to them tonight. ...

mag123ben

•3 days ago

2 Replies

Droxia vs Hydrea

I've been treated with Hydroxyurea (hydrea) 500mg for PV since December 2021. Due to stomach issues in March 2023 the HU was decreased to every other day. I...

I've been treated with Hydroxyurea (hydrea) 500mg for PV since December 2021. D...

ERei

•3 days ago

5 Replies

Spring covid booster

Wondering how most feel about having this? I have had all that have been offered,and have always had the phizer vaccine,but this time all I can find is the...

Wondering how most feel about having this? I have had all that have been offere...

caroline_284

•3 days ago

56 Replies

Momelitinib

Is anyone here with MF taking momelitinib.I'd like to know how you're doing on the drug and if you have any side effects? I may qualify to take it....I've...

Is anyone here with MF taking momelitinib.I'd like to know how you're doing on t...

champ30

•3 days ago

8 Replies

SCT update

I’m now on day +284 & so far seem to be progressing well. I know things may change, but hopefully I’ll continue to progress. I’m managing to walk most days,...

I’m now on day +284 & so far seem to be progressing well. I know things may chan...

SRH55

•4 days ago

6 Replies

SCT update

I’m now on day +284 & so far seem to be progressing well. I know things may change, but hopefully I’ll continue to progress. I’m managing to walk most days,...

I’m now on day +284 & so far seem to be progressing well. I know things may chan...

SRH55

•4 days ago

14 Replies

”low risk” interferon trials

Hi all, just wondering if any folks who have been tagged “low risk” by your care team have tried interferon treatment. I’m a 36 y/o female with PV (60% jak2...

Hi all, just wondering if any folks who have been tagged “low risk” by your care...

TwinMom88

•4 days ago

14 Replies

just being nosy

Hi everybody I am just enquiring how often do you get to see your Haematology consultant regarding your MPN. When I lived on Teesside I had my bloods...

Hi everybody I am just enquiring how often do you get to see your Haematology ...

jillydabrat

•4 days ago

31 Replies

whiplash pain and interferon

hi everyone I started interferon about 6 weeks ago and apart from a bit of nausea and the odd ache the day after seem ( fingers crossed) to be tolerating it...

hi everyone I started interferon about 6 weeks ago and apart from a bit of naus...

Loubprv

Volunteer•4 days ago

14 Replies

Avoiding crowds - immunosuppressed

I was diagnosed with ET six months ago and am on aspirin and hydroxy with few side effects so, other than occasionally getting over tired, life as a retiree...

I was diagnosed with ET six months ago and am on aspirin and hydroxy with few si...

Ipadlin

•4 days ago

39 Replies

INCB160058 - new selective JAK2i

Has anyone been following this drug from incyte? It was presented at last years ASH conference, and they’re already lining up a safety trial on healthy...

Has anyone been following this drug from incyte? It was presented at last years ...

Coffeeglass

•4 days ago

4 Replies

Only Just Diagnosed

Hi, I have just received a diagnosis of MPN COLR positive. My haematologist has not put any further diagnosis e.g. ET, MF or PV My assumption is it is...

Hi, I have just received a diagnosis of MPN COLR positive. My haematologist h...

Old_Coger

•4 days ago

7 Replies

Hydroxycarbanide

My husband takes 2 hydroxycarbanide Mon to Fri. We don’t need contraception. Just wondering do we still need to use condoms. What are the consequences if we...

My husband takes 2 hydroxycarbanide Mon to Fri. We don’t need contraception. Jus...

Collie123

•4 days ago

2 Replies

Dexta still no results

My Dr secretary rang the hospital. They haven't got enough staff to read them. Even if my Dr. Rang for results they still would have to wait for someone who...

My Dr secretary rang the hospital. They haven't got enough staff to read them. E...

mag123ben

•5 days ago

2 Replies

Medical Cannabis?

Has anyone tried medical cannabis for pain relief? I have severe arthritis which limits my life quite a lot, my doctor won’t refer me for knee replacement...

Has anyone tried medical cannabis for pain relief? I have severe arthritis which...

lizzziep

•5 days ago

11 Replies

Listen to this about ET

https://youtu.be/g8qM3XsJBUU?si=Zcw_Mi8mUCS1s-TB copy and play it on you tube It’s about ET very very informative

https://youtu.be/g8qM3XsJBUU?si=Zcw_Mi8mUCS1s-TB copy and play it on you tube ...

SammieLou

•5 days ago

8 Replies

Interferon

I'm about to start interferon treatment for ET. I need to learn to inject myself. I'm a bit overwhelmed right now and concerned about side effects. Will I need...

I'm about to start interferon treatment for ET. I need to learn to inject myself...

Otis23

•5 days ago

26 Replies

If anyone is interested in this study . .

This was at the Haematology Conference last Friday, I thought this was an excellent study so posting here for anyone who hasn’t seen it

This was at the Haematology Conference last Friday, I thought this was an excell...

Melaniem59

•6 days ago

1 Reply

Jury Service

Has anyone been excused from jury service because of having an MPN?I've just received a letter and I honestly can't see how I can do this with the fatigue,...

Has anyone been excused from jury service because of having an MPN?I've just rec...

EGMumma

•6 days ago

29 Replies

Migraine aura and aspirin v clopidogrel

Hello again. Hope you all had a good weekend. I've enjoyed a complete break from migraine aura (visual, sometimes speech and short term memory, the headache...

Hello again. Hope you all had a good weekend. I've enjoyed a complete break fr...

RoundTheWorld

•6 days ago

18 Replies

Probiotics anyone?

I have been taking probiotics for the last 3.5 years and seriously I cannot see any benefit as a supplement to daily 500mg hydroxy. I still have a permanent...

I have been taking probiotics for the last 3.5 years and seriously I cannot see ...

Goosebumps52

•6 days ago

6 Replies

Jet2 Holidays Blood Cancer Form

Hi all in UK. Has anyone been asked to complete a form by Jet2 asking quite a lot of intrusive questions before showing them to fly? Including questions such...

Hi all in UK. Has anyone been asked to complete a form by Jet2 asking quite a l...

rachel2006

•7 days ago

22 Replies

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Posts - MPN Voice | HealthUnlocked

MPN Voice

Keeping Pegasys injections cool and monitoring temp

allele burden VAF rising

Covid vaccine reaction - further post

Choosing medication for PV/early MF

Reclast

Hip Replacement Update

Exray taken and shown to me.

Covid vaccine reaction

Dr. MRI scan

Droxia vs Hydrea

Spring covid booster

Momelitinib

SCT update

SCT update

”low risk” interferon trials

just being nosy

whiplash pain and interferon

Avoiding crowds - immunosuppressed

INCB160058 - new selective JAK2i

Only Just Diagnosed

Hydroxycarbanide

Dexta still no results

Medical Cannabis?

Listen to this about ET

Interferon

If anyone is interested in this study . .

Jury Service

Migraine aura and aspirin v clopidogrel

Probiotics anyone?

Jet2 Holidays Blood Cancer Form

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