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MPN Voice

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increasing HCT despite Besremi

For those of you on Besremi, how long did it take to lower your Hct? I have bee...

ET progression to MF - anxiety issues

My ET is now progressing to Post ET Myelofibrisis. My hemo has recommended I sta...

A Gene that affects allele reduction in Jak2 by IFN.

I came across this article. It's an example of experts continuing to slice and ...
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Pegasus interferon covered by Insurance

I have been on Hydroxyurea for 20 months and am really feeling fatigued and ach...

Another clinical trial for MF

here is another clinical trial for MF lead by Ruben Mesa....

Finasteride

hello my husband had a hair transplant and the doctor at the hair clinic recomme...

Rapamycin

I have friends using low doses of this drug and I have an appointment with a doc...

NAC inhibits Jak2 thrombosis in MPN Study

Just came upon this. Thought this might be interesting to some https://www.n...

Second Malignancies Among Older Patients With Classical MPN Treated With Hydroxyurea

TAKE-HOME MESSAGE In this retrospective cohort study of 4023 patients aged ≥66...

Monthly blog dedicated to young people living with MPNs - Alice’s eleventh blog: Managing an MPN at school, college or university

Are you currently at school, college or university? With the new academic year f...

Marrow Cellularity, normal and hyper levels?

My BMB from Dx had a note "hypercellular". This is typical for PV and for a sen...

Getting an MPN specialist as advised by Hunter and experience of GasLighting

Firstly, thank you to Hunter for all the support he has given me and always tell...

Study about young MPN cohort. Could we have some further information from prof.Harisson (was a co-author)@Mazcd?

This is the (new retrospective)study that says young MPNs have higher incidenc...

Interferon or Anagrelide ?

Morning everyone . Having to decide between Peg or Anagrelide for my next consul...

Beta Alanine to relief itching for PV

does any fellow PV has tried Beta Alanine to relief itching...? it is working...

pegalated interferon and thyroid

hi all, I’ve been on interferon 45 weekly for about two years now, and have ha...

Understanding Platelet Counts in MPNs

From our friends at MyMPNTeam. Short easy to understand information about the s...

symptom questions, kidney issues?

hi all you very knowledgeable people out there. I was just wondering if anyone ...

MPN Voice Vlogcasts – In Conversation With… Louise Broughton

MPN Voice Vlogcasts – In Conversation With… a series of monthly informal convers...

Do I have a blood clot?

Hi veryone, I hope you can help with some advice. I have a small black / blue ...

Medical Gaslighting

Happened to come across this article on medical gaslighting. I had not heard o...

Shingles Vaccine

There has been a lot of advertising on Classic FM that older people with immune ...

Besremi Dose Point Plot of some Members (Update Aug 15)

In the post link below I asked what dose members on Besremi were taking and whet...

can Et turn into Leukaemia

this may sound silly but can ET turn into leukaemia Or does it turn into MF firs...

Besremi side-effects, reverting to Peg

I've been on Besremi for over 6 months and have been on 400mcg for 10+ weeks. I ...

platelets low

hi all. I have ET and last few blood tests my platelets are getting lower. Has a...

can you take asprin and warfrin with a history if clotting.

Hi MPN friends anyone taking both the above meds toghether would be interested...

Busulfan

Everytime l complain about hydroxy side effects to the medics lt feels like lm...

Covid-19 Positive

 Yesterday afternoon I noticed that Stu had started coughing, it carried on in...

burning up.

My shins and ankles are burning,my left foot badly swollen ,in recovery from wh...
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