Posts - MPN Voice | HealthUnlocked

MPN Voice

10,445 members • 14,398 posts

All posts for January 2022

Skipping days !

Was told to reduce days of taking medication, instead of 7 days at one Hydroxycarbamide a day I have now to take one five days is this normal procedure? My...

Was told to reduce days of taking medication, instead of 7 days at one Hydroxyc...

•2 years ago

Starting Peg and Covid boosters

ET MPL here. Probably starting Pegasys shortly. Seeing Haematologist tomorrow. Should I be pushing for a 4th Covid jab. Had 3rd one in September. Also does...

ET MPL here. Probably starting Pegasys shortly. Seeing Haematologist tomorrow. S...

•2 years ago

travel insurance question

attempting to get some travel insurance due to having ET and a facial dystonia does anyone know if they are classed as a terminal prognosis?

attempting to get some travel insurance due to having ET and a facial dystonia d...

•2 years ago

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mRNA (Pfizer, Moderna) vax dose sizes

I've looked deeper into mRNA dose sizes, as it has been an ongoing subject of confusion, esp in our UK cohort. To help any member seeking clear info here are...

I've looked deeper into mRNA dose sizes, as it has been an ongoing subject of co...

•2 years ago

PEGASYS, help! Does the insomnia side effect ever subside?

Hi folks, started PEG 6 weeks ago and it will not allow me to sleep, it won’t even let me nap during the day. On top of my 14 hr a day profound fatigue it has...

Hi folks, started PEG 6 weeks ago and it will not allow me to sleep, it won’t ev...

•2 years ago

4th Covid vaccine

Just had my 4th vaccine! I had initially attempted to book it at a vaccination centre but couldn’t because my NHS records show the 3rd primary dose as a...

Just had my 4th vaccine! I had initially attempted to book it at a vaccination ...

•2 years ago

Statin effects

Can taking a statin (as well as established Aspirin therapy) have any affect on platelet count? On either a good or bad way for someone with ET? Thank you

Can taking a statin (as well as established Aspirin therapy) have any affect on ...

•2 years ago

ET MPL HELP

Can anybody give me advice how to go about getting to see a mpn specialist and also one near Manchester.also what is the best treatment for ET MPL .thank you.

Can anybody give me advice how to go about getting to see a mpn specialist and a...

•2 years ago

Operation Cure PV

Operation cure PV is not just a dream by Besremi. https://m.youtube.com/watch?v=Yb9dB-Vq3rs

Operation cure PV is not just a dream by Besremi. https://m.youtube.com/watch?v...

•2 years ago

Phlebotomy second one tomorrow

Hi All! Happy New Year! I hope things are going well for you. I am having my second phlebotomy tomorrow. The doctor, not an MPN specialist but a regular...

Hi All! Happy New Year! I hope things are going well for you. I am having my sec...

•2 years ago

ET and Covid Risk

Happy New Year everyone. Why are we classed as extremely vulnerable to Covid? I read we may need a 4th booster and we are eligible for the meds should we get...

Happy New Year everyone. Why are we classed as extremely vulnerable to Covid? I ...

•2 years ago

UPDATE FOR MPN PATIENTS IN ENGLAND RE:- Fast access to COVID medicines for people with blood cancer

Further to the announcement that from 20 December 2021, across the UK, some people with blood cancer who have symptoms and test positive for COVID may be...

Further to the announcement that from 20 December 2021, across the UK, some peop...

Partner•2 years ago

Allele >50% vs Thrombosis and Progression

Came across this retrospective study that looked at AT vs VT vs allele. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8665926/ As usual I'm focused on the...

Came across this retrospective study that looked at AT vs VT vs allele. https://...

•2 years ago

INF, allele and more

I posted this in a reply thread. Seems of possible general interest. In my opinion based on these and other info I've read, INF does more than just cut...

I posted this in a reply thread. Seems of possible general interest. In my o...

•2 years ago

Besremi Approval Saga - SUCCESS!

I am very pleased to report success in getting Besremi authorized by my Cigna Medicare Rx - Medicare Part D plan. The original denial contained the...

I am very pleased to report success in getting Besremi authorized by my Cigna M...

•2 years ago

Numbing cream ?

Hi everyone, Happy New Year to you all. My husband has to give me my interferon injection as I am a bit of a wimp to do it myself :-( ( which I...

Hi everyone, Happy New Year to you all. My husband has to give me my interferon...

•2 years ago

Switch from HU to Pegasys

With thanks to Hunter and ETGuy for their ongoing advice and support, I made the switch this morning. My first (supervised) injection was easy and painless; I...

With thanks to Hunter and ETGuy for their ongoing advice and support, I made the...

•2 years ago

Mixing Moderna and Pfizer?

Does anyone know if you can have a Pfizer 3rd Primary and a Moderna booster? I’ve had two AZ’s and a Pfizer 3rd. Thinking a Moderna booster would give optimal...

Does anyone know if you can have a Pfizer 3rd Primary and a Moderna booster? I’v...

•2 years ago

4th Jab/booster for the immunosuppressed

Has anyone here been called up by their GP for their 4th jab? My understanding is that anyone with Lymphocytes under 1 qualifies as immunosuppressed and latest...

Has anyone here been called up by their GP for their 4th jab? My understanding i...

•2 years ago

MPN Specialist

From what I’ve read on here, it seems MPN specialists are thin on the ground. There aren’t any where I live. How does one go about finding one in the UK? ( I...

From what I’ve read on here, it seems MPN specialists are thin on the ground. Th...

•2 years ago

Thank You Everyone

Can I just say a very big thank you to so many of you who replied to my question. What a great lot you are helping us all gain a little bit more reassurance...

Can I just say a very big thank you to so many of you who replied to my question...

•2 years ago

Anyone taken Heparin with Et?

On Saturday I slipped over on the decking when outside emptying the bin and broke my ankle! The hospital gave me heparin injections for 10 days due to being...

On Saturday I slipped over on the decking when outside emptying the bin and brok...

•2 years ago

NHS booster letter.

Has anyone else had a booster letter from the NHS with the world record for the longest website address to book your booster in? I did & thought great no need...

Has anyone else had a booster letter from the NHS with the world record for the ...

•2 years ago

Hydroxy effectiveness

Hi everyone, I was hoping I would never have to write and ask this question. Have been on Hydroxy since August, 9 tablets a week and have been fine, felt fine,...

Hi everyone, I was hoping I would never have to write and ask this question. Hav...

•2 years ago

Hello everyone

I would just like to say happy new year to everyone hope it’s a healthy and happy one and hopefully things will get better for us this year roll on spring this...

I would just like to say happy new year to everyone hope it’s a healthy and happ...

•2 years ago

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