Posts - MPN Voice | HealthUnlocked

MPN Voice

10,832 members•15,125 posts

All posts for March 2023

Questions about taking Alendronate (Fosomax) and hydroxyeurea

I have Et with Jak 2. I was diagnosed last year when my platelets were around 600. After having a physical and a bone scan my gp just recommended taking...

I have Et with Jak 2. I was diagnosed last year when my platelets were around ...

Skater69

•2 years ago

4 Replies

Why isn’t interferon alpha working for me?

my platelet count is 1240. I have been injecting interferon alpha 90mg for 8 weeks , 2 blood tests 4 weeks apart showed a reduction of 3 and 17, total 20 in 2...

my platelet count is 1240. I have been injecting interferon alpha 90mg for 8 wee...

Maxamber

•2 years ago

30 Replies

Constipation problems!

Hi New ET patient here. Diagnosed in January. Platelets around 606. For now on low doses of Aspirin. I changed my life drastically. Stoped smoking and...

Hi New ET patient here. Diagnosed in January. Platelets around 606. For now on ...

Myers75

•2 years ago

8 Replies

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Mutations in CALR+JAK2

Hello, I was diagnosed with ET a few weeks back. I am interested whether others have mutations in both JAKS and CALR genes. Is there anything I should be...

Hello, I was diagnosed with ET a few weeks back. I am interested whether other...

Onikemark

•2 years ago

1 Reply

Anybody with bradycardia (low heart rate)

Shortly after multiple pulmonary emboli in April, 2022, lead to my long-term NSAID usage being stopped, tests lead to diagnosis of PMF with CALR, type 1,...

Shortly after multiple pulmonary emboli in April, 2022, lead to my long-term NSA...

TLJ-1

•2 years ago

5 Replies

How do you cope with the fatigue.

Hi This is my first post after being diagnosed and i am struggling. I was diagnosed with ET Jak2 last December after a 20 month wait from being referred by...

Hi This is my first post after being diagnosed and i am struggling. I was diag...

Arnoldthecat

•2 years ago

42 Replies

Anaemia- CALR+ET

The Consultant Haematologist(NHS) has told me that recent blood tests indicate anaemia. Haemaglobin level 110x10gl. He doesn’t consider this is caused by...

The Consultant Haematologist(NHS) has told me that recent blood tests indicate a...

gilded

•2 years ago

10 Replies

Update on 2 week appointment

Hi all Hope all well ,had my next 2 weeks appointment my Platelets are on 476, I don't know what my bloods has he Dr didn't say but normally I get a letter...

Hi all Hope all well ,had my next 2 weeks appointment my Platelets are on 476, ...

Jody00

•2 years ago

4 Replies

Just a question

hi sorry to ask am still getting my head around this I have ET and Jak2 am on pegsy 90mg weekly, will I always have this ? Also I feel like a pain in. My left...

hi sorry to ask am still getting my head around this I have ET and Jak2 am on pe...

Staroftheday

•2 years ago

1 Reply

ET & Bone Pain

I was diagnosed two years ago with ET and I got out of bed Wednesday morning and experienced what I believe was my first bone pain. It felt like someone...

I was diagnosed two years ago with ET and I got out of bed Wednesday morning and...

Smoothie2020

•2 years ago

32 Replies

Detox update

Glad I've done the detox but platelets up from 540 to 660. I know they can vary but been getting lower consistently.So I'll start Hydroxycarbamide again...

Glad I've done the detox but platelets up from 540 to 660. I know they can var...

Mostew

•2 years ago

13 Replies

Pegasys and Liver Heath

My ALT and Potassium have gone up since I have been on Pegasys. Is there anything I can do (or not do) to improve liver function? I have a pretty healthy diet...

My ALT and Potassium have gone up since I have been on Pegasys. Is there anythin...

Zeppelin11

•2 years ago

11 Replies

Aspirin allergic?

Hello Folks, has anyone experienced allergic reactions to Aspirin? How does it feel how does it look like? A have red dots all over my torso especcially where...

Hello Folks, has anyone experienced allergic reactions to Aspirin? How does it ...

umpalumpa76

•2 years ago

8 Replies

High blood pressure.

Currently lm taking indepamide 2.5 mg for blood pressure it was prescribed 2 years when l was unable to tolerate the side effects from all of the calcium...

Currently lm taking indepamide 2.5 mg for blood pressure it was prescribed 2 ye...

Hidden

•2 years ago

5 Replies

Help understanding my BMB results

Just an update, I have received my post clinic letter from my consultant and the results of the genetic tests are now in. CALR mutated 9 no deletion- neither...

Just an update, I have received my post clinic letter from my consultant and the...

UKZA

•2 years ago

1 Reply

Besremi Titration Questions

I am 50yo diagnosed with PV/JAK2+ since 2018. I went through HU and then Jakafi before MPN specialist at Johns Hopkins recommended switching to Besremi for...

I am 50yo diagnosed with PV/JAK2+ since 2018. I went through HU and then Jakafi ...

RyanCB

•2 years ago

22 Replies

What's the deal with Spinach?

Does eating too much Spinach while having PV affect your CBC? Just wondering!

wateron

•2 years ago

15 Replies

Save the date: MPN Voice Living with MPNs Day 2023 - Saturday 18th November

This will be the 7th Living with MPNs Day that MPN Voice has hosted, it is an all-day event held in London, for MPN patients, their family, friends and carers...

This will be the 7th Living with MPNs Day that MPN Voice has hosted, it is an al...

Mazcd

Partner•2 years ago

2 Replies

NORMAL BLOOD PRESSURE OVER 80 yrs.old ET

Hello friends, quick question….what blood pressure readings do any over 80 yr ladies with ET JAK 2+ have please? My GP has just told me my BP is too low for...

Hello friends, quick question….what blood pressure readings do any over 80 yr l...

azaelea

•2 years ago

12 Replies

burning limbs

The last week I have had extremely hot and burning legs and to some extend legs. It has kept me awake, is rather painful, and prevented sleep. I have PMF...

The last week I have had extremely hot and burning legs and to some extend legs....

artydutch

•2 years ago

3 Replies

Turmeric And Curcumin for Anxiety

Good Evening Has anyone tried Turmeric/curcumin to ease anxiety? Am currently on 5htp which has slightly lifted mood. But trying hardest to stay off anti...

Good Evening Has anyone tried Turmeric/curcumin to ease anxiety? Am currently o...

Smudger0122

•2 years ago

9 Replies

Travel insurance with Post ET, MF

Can anyone recommend a travel Insurance company please. I have MF & am currently waiting to see if I can have a SCT. I am in the UK & planning a trip to the...

Can anyone recommend a travel Insurance company please. I have MF & am currently...

SRH55

•2 years ago

14 Replies

ET diagnosis

Hi, just wondering if anyone has any advice for me I have been diagnosed with ET last june with a platelet count of 987 put on low dose aspirin 75 mg.Since...

Hi, just wondering if anyone has any advice for me I have been diagnosed with ET...

Mike1974

•2 years ago

31 Replies

Soursop for PV

Does anyone have aver try soursop leaves to treat Polycythemia Vera...? Just watching at tik tok, a man declare got complete remission after taking tumeric,...

Does anyone have aver try soursop leaves to treat Polycythemia Vera...? Just wat...

william-Indo

•2 years ago

5 Replies

Turmeric dose guidance

Hi, I have ET and I'm on low dose aspirin. My platelet count is steadily rising. Does anyone know what dose of turmeric I could take without affecting the...

Hi, I have ET and I'm on low dose aspirin. My platelet count is steadily rising....

Solstice2020

•2 years ago

4 Replies

Weird warm feeling in my left foot

Has anyone experienced anything like this? Every now and then I get a warm feeling in my left foot. Like I've stepped in a warm puddle. Just wondering if its...

Has anyone experienced anything like this? Every now and then I get a warm feel...

queeniethequeen

•2 years ago

3 Replies

What does Anaemic mean ?

I am a bit confused about what anaemic means. I have low folate at 3.82 ( the normal range is >3.89) , and red blood cells are 3.7 ( normal range 3.8 -5.8)....

I am a bit confused about what anaemic means. I have low folate at 3.82 ( the no...

jodary

•2 years ago

11 Replies

Iron deficiency anemia and increased A1C levels

Have those of you who receive phlebotomy for PV experienced elevated A1C levels? I get phlebotomies ever couple of weeks, which as expected, has caused me to...

Have those of you who receive phlebotomy for PV experienced elevated A1C levels?...

LIGEBA

•2 years ago

7 Replies

rising platelets

Good morning I’m getting worried as my platelets have been rising continuously for the last 9 months They were 489 but now at my blood test yesterday they...

Good morning I’m getting worried as my platelets have been rising continuously...

sweetpea19

•2 years ago

8 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for March 2023

Questions about taking Alendronate (Fosomax) and hydroxyeurea

Why isn’t interferon alpha working for me?

Constipation problems!

Mutations in CALR+JAK2

Anybody with bradycardia (low heart rate)

How do you cope with the fatigue.

Anaemia- CALR+ET

Update on 2 week appointment

Just a question

ET & Bone Pain

Detox update

Pegasys and Liver Heath

Aspirin allergic?

High blood pressure.

Help understanding my BMB results

Besremi Titration Questions

What's the deal with Spinach?

Save the date: MPN Voice Living with MPNs Day 2023 - Saturday 18th November

NORMAL BLOOD PRESSURE OVER 80 yrs.old ET

burning limbs

Turmeric And Curcumin for Anxiety

Travel insurance with Post ET, MF

ET diagnosis

Soursop for PV

Turmeric dose guidance

Weird warm feeling in my left foot

What does Anaemic mean ?

Iron deficiency anemia and increased A1C levels

rising platelets

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