Posts - MPN Voice | HealthUnlocked

MPN Voice

10,722 members • 14,842 posts

All posts for December 2021

Mutations in MPNs to “interfere-on »

IFNα therapy has been shown to deplete the MPN HSPC pool through activation and exit from a quiescent state and induction of differentiation. These biological...

IFNα therapy has been shown to deplete the MPN HSPC pool through activation and ...

•3 years ago

HRT & clotting

Question for the ladies, I finally got HRT patches on the 2/11 only for gp to take me off then due to risk of clotting with ET. I also have high blood...

Question for the ladies, I finally got HRT patches on the 2/11 only for gp to ta...

•3 years ago

Osteoporosis

Hi all, I have been on 500mg of hydroxyurea for 5 years and just been told that I’m at high risk for fractures because of a big change in my osteoporosis due...

Hi all, I have been on 500mg of hydroxyurea for 5 years and just been told that ...

•3 years ago

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Krissy

I am a 71 year old woman and have been told that I will have to be on my chemotherapy tablets for life. At the moment they are trying different doses until...

I am a 71 year old woman and have been told that I will have to be on my chemoth...

•3 years ago

Anemocheck

The wait is finally over: https://mailchi.mp/eef697b1b381/be-positive-anemocheck-mobile-is-here-11001245?e=c168daf9ab

The wait is finally over: https://mailchi.mp/eef697b1b381/be-positive-anemocheck...

•3 years ago

Why don’t they know I’ve had a booster?

I keep getting texts from the NHS asking me to get a booster, as they have no record of me having one - but I had one several weeks ago! I had a letter from...

I keep getting texts from the NHS asking me to get a booster, as they have no re...

•3 years ago

Bloods spike

So because of covid not seen a hematology doctor or had blood test since march.. So bloods last week and Doctor called red count has spiked so hydrea 500...

So because of covid not seen a hematology doctor or had blood test since march.....

•3 years ago

Surgery update

Just to let all the kind folk who commented on / gave advice on my colon surgery. The operation went ahead as planned and according to the surgical team had no...

Just to let all the kind folk who commented on / gave advice on my colon surgery...

•3 years ago

Nose bleeds

Hi am69 and had major nose bleed 15 days ago would not stop ended up in AN E I taken clopidrel for 5 year so stopped these for 2weeks and started back on...

Hi am69 and had major nose bleed 15 days ago would not stop ended up in AN E I ...

•3 years ago

Thyroid

Has anyone on hydroxycarbamide for ET+JAK 2 and on thyroxine for under active thyroid and aspirin had any interaction between the meds I am sure I am getting...

Has anyone on hydroxycarbamide for ET+JAK 2 and on thyroxine for under active t...

•3 years ago

Blood pressure

Hi everyone. I have ET Jak 2 pos. I am on hydroxycarmide 500 plus 75m clopidogrel daily. Normally quite healthy but the past few weeks I have been...

Hi everyone. I have ET Jak 2 pos. I am on hydroxycarmide 500 plus 75m clopidogr...

•3 years ago

Ropeginterferon 2B--exciting but also scary!

Has anyone read the possible risk factors using the new drug. I have waited for a year for this to be approved in the US, but with all the alarming risk...

Has anyone read the possible risk factors using the new drug. I have waited for ...

•3 years ago

Besremi cost update

In this post the cost is quite extreme, more than triple what I expected. Likely there are discounts that Insurance Cos get, otherwise there may be pressure...

In this post the cost is quite extreme, more than triple what I expected. Likel...

•3 years ago

Kidney pain

Hi I appreciate that Peg may cause various aches and pains in some cases. However I was wondering if any one experienced quite severe kidney pain when taking...

Hi I appreciate that Peg may cause various aches and pains in some cases. Howev...

•3 years ago

Update

Hi All, just a quick update on my anaemia v erythrocytosis carryon! After 3 weeks of iron, I ended up with an HCT over .45, so was told to arrange a...

Hi All, just a quick update on my anaemia v erythrocytosis carryon! After 3 wee...

•3 years ago

Mf bone pain

Hi, I've mf and et and suffering terribly with pain in the bones of my hands predominantly. I know we are prone to bone pain but wondering if anyone else...

Hi, I've mf and et and suffering terribly with pain in the bones of my hands pre...

•3 years ago

Some good news for Edinburgh and east of Scotland patients

I hope this link works: https://www.edinburghlive.co.uk/news/edinburgh-news/inside-edinburghs-state-art-new-22330508 Basically Edinburgh Western, the hospital...

I hope this link works: https://www.edinburghlive.co.uk/news/edinburgh-news/insi...

•3 years ago

Hydroxycarbamide

So that's me been taken treatment for MF 8 weeks and already my platelet level has went from 600 to 200 also hemoglobin normal , I have been getting seen and...

So that's me been taken treatment for MF 8 weeks and already my platelet level h...

•3 years ago

GPs and mpns

Hi all, so as of this month I’m no longer seeing a haematologist he’s passing me to my gp with all protocols, my blood levels are stable which is good I’ll...

Hi all, so as of this month I’m no longer seeing a haematologist he’s passing me...

•3 years ago

The amount of Jabs needed.

I live in Guernsey . I have PV and Femoral Arteritis and so far have had two jab's of AZ, then given a Booster P vax, but after reading a post here it states...

I live in Guernsey . I have PV and Femoral Arteritis and so far have had two jab...

•3 years ago

banner photo of mountain

On a lighter note... I see a beautiful photo of a rocky mountain peak on the banner of the daily digest email. I was just wondering who chooses these photos...

On a lighter note... I see a beautiful photo of a rocky mountain peak on the ban...

•3 years ago

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Why am now being asked to have another vaccine so soon after the third?

« On the 29th November 2021, the JCVI announced that all people who are immunocompromised, which includes those with blood cancer, are now eligible for a...

« On the 29th November 2021, the JCVI announced that all people who are immunoco...

•3 years ago

Raynaud's Syndrome?

Now that the cold is upon us I have noticed my fingers getting white and numb the likes of which I havent ever experienced before - takes about 15-20min for...

Now that the cold is upon us I have noticed my fingers getting white and numb th...

•3 years ago

No vaccine no visits?

Do you let anyone unvaccinated visit you in your house? Such a dilemma..

Do you let anyone unvaccinated visit you in your house? Such a dilemma..

•3 years ago

Third vaccine and anti-bodies after Pfizer

I also had a private anti-body test and the results came back sky high for Covid 19.

I also had a private anti-body test and the results came back sky high for Covid...

•3 years ago

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