Posts - MPN Voice | HealthUnlocked

MPN Voice

10,832 members•15,126 posts

All posts for April 2024

malaria

Unfortunately I cannot help although I have taken anti malaria pills in the past it was before I was on hydroxycarbamide

Unfortunately I cannot help although I have taken anti malaria pills in the past...

grandpa101

•7 months ago

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High Ferritin, LDH & ALT

Hi Friends, I’m ETJ2+ My last bloods showed Ferritin- 490 (says max normal is 200) LDH- 268 (says max normal is 220) ALT- 99 (says max normal is 55) I was...

Hi Friends, I’m ETJ2+ My last bloods showed Ferritin- 490 (says max normal is...

Threelions

•7 months ago

6 Replies

Shingles Jab

I am on hydroxy. Am I OK to have the shingles jab?

robcaduk

•7 months ago

13 Replies

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Getting tested for autoimmune diseases

I posted about experiencing intermittent burning joint pain and I appreciated hearing everyone's responses. There were a few people who said they also had...

I posted about experiencing intermittent burning joint pain and I appreciated he...

brightlys

•7 months ago

22 Replies

Malaria tablets

Hi everyone, am I the process of looking at a holiday. I know yellow fever vaccine is a big no no. Am on hydroxycarbamide and daily aspirin with a diagnosis...

Hi everyone, am I the process of looking at a holiday. I know yellow fever vacc...

SazzaC

•7 months ago

4 Replies

Team alpha!!!!

I acted like an adult today and had my MRI! Stable old lesions with no change. On my last MRI before Besremi I had a new one and it has shown improvement!!!!...

I acted like an adult today and had my MRI! Stable old lesions with no change. ...

KLCTJC

•7 months ago

24 Replies

Hello from Syracuse, NY!!

Hello everyone. I am new here and newly diagnosed with ET. Using forums of this type to learn about MPN's. Will likely spend my time lurking to learn. Nice...

Hello everyone. I am new here and newly diagnosed with ET. Using forums of this ...

Skidsteer565

•7 months ago

16 Replies

Has anyone used FSM for joint pain and disc bulges with an MPN

I have recently been in a car accident which has inflamed neck pain and disc bulge issues - I am seeing an osteopath who has suggested using an fsm machine at...

I have recently been in a car accident which has inflamed neck pain and disc bul...

BeckDing

•7 months ago

4 Replies

Changing meds

Hi everyone, I haven't been on for a while I had a family tragedy and I have been feeling terrible for quite a while now . Anyway I am finally changing from...

Hi everyone, I haven't been on for a while I had a family tragedy and I have be...

indy22

•7 months ago

8 Replies

2nd generation Jak-i's, what's up?

I posted last year on a 2nd gen Jak inhibitor. This is different from the various recently approved ones for MF (Vonjo etc) that are more related to Gen 1...

I posted last year on a 2nd gen Jak inhibitor. This is different from the vario...

EPguy

•7 months ago

3 Replies

can I have your thoughts

these are my latest blood tests Have a telephone appointment on Monday Have all the symptoms of PV not sure if I’ve had the Jak test will ask on Monday...

these are my latest blood tests Have a telephone appointment on Monday Have ...

enchantedmum

•7 months ago

1 Reply

my apologies for the repetition of posts 🤷‍♀️

I am sorry and I don’t know how I managed it …. 🙆‍♀️ I see there are 3 sugar and alcohol posts all the same post tho with different threads of answers....

I am sorry and I don’t know how I managed it …. 🙆‍♀️ I see there are 3 sugar ...

Pachena

•7 months ago

2 Replies

Update on heart problems

Thank you all for your input last week re my 2 leaky valves and pulmonary hypertension diagnosis. Forgot to mention also have very low heart beat, low 40s ,...

Thank you all for your input last week re my 2 leaky valves and pulmonary hypert...

JP1952

•7 months ago

5 Replies

Jak2 Allele Burden reveal

I’m Canadian and after reading posting on this site I’ve noticed the percentage of Alle Burden is often referred to, so I asked my haematologist what mine was...

I’m Canadian and after reading posting on this site I’ve noticed the percentage...

Suenami

•7 months ago

41 Replies

Good results, hoping continues

I feel like I am halfway there! Labs looked good. Wbc 3.3, hct 41.5, plts 216, neutrophils 2.9, lymphocytes 0.5. Was so excited I squealed today!...

I feel like I am halfway there! Labs looked good. Wbc 3.3, hct 41.5, plts 216,...

KLCTJC

•7 months ago

9 Replies

JAK2 V617F Allele Burden and Thrombotic Events in Patients w/ JAK2 V617F Positive PCV/ET @ High Risk of Thrombosis

Background: The goal of therapy of polycythemia vera (PV) and essential thrombocythemia (ET) is primarily to prevent vascular events that are the...

Background: The goal of therapy of polycythemia vera (PV) and essential thromboc...

PhysAssist

•7 months ago

15 Replies

PV, Botox & Blood Thinners

Hi MPN Community! I have looked at past posts regarding having PV and getting Botox, however, I just wanted people's input regarding whether they get Botox...

Hi MPN Community! I have looked at past posts regarding having PV and getting B...

PVKween

•7 months ago

4 Replies

Treatment Change, question

Hi Everyone, I'm enjoying all of the posts and replies they are really informative. I'm in the process in changing my medication from hydroxycarbamide to...

Hi Everyone, I'm enjoying all of the posts and replies they are really informat...

Swim360

•7 months ago

20 Replies

Sugar and alcohol…?

Just wondering if it’s best to cut them from the diet or does it really matter? Do they make any difference to people with MPN’s. We are overseas and I am...

Just wondering if it’s best to cut them from the diet or does it really matter? ...

Pachena

•7 months ago

17 Replies

Sugar and alcohol…?

Just wondering if it’s best to cut them from the diet or does it really matter? Do they make any difference to people with MPN’s. We are overseas and I am...

Just wondering if it’s best to cut them from the diet or does it really matter? ...

Pachena

•7 months ago

45 Replies

Sugar and alcohol…?

Just wondering if it’s best to cut them from the diet or does it really matter? Do they make any difference to people with MPN’s. We are overseas and I am...

Just wondering if it’s best to cut them from the diet or does it really matter? ...

Pachena

•7 months ago

4 Replies

Spring Covid Vaccines Reply .

thank you all so much for your varied and helpful replies and to Andy T for the link to Blood Cancer UK’s information. It looks like it might be advisable to...

thank you all so much for your varied and helpful replies and to Andy T for the ...

azaelea

•7 months ago

3 Replies

Leg pain.

My balance isn't very good. But the pain in my left leg is really bad. Keeps me awake at night, and hinders me during the day. Leg hurts all around at hip...

My balance isn't very good. But the pain in my left leg is really bad. Keeps me ...

mag123ben

•7 months ago

1 Reply

Medical exemption certificate

Hi just a question for folks in the UK . I'm under 60 and wondering if I am entitled to a medical exemption certificate for my prescriptions ? I receive my...

Hi just a question for folks in the UK . I'm under 60 and wondering if I am enti...

Catbells66

•7 months ago

17 Replies

Good News on Peg

Had appointment with my MPN specialist yesterday and it was the shortest one since I was diagnosed five years ago. We reviewed my most recent blood work and...

Had appointment with my MPN specialist yesterday and it was the shortest one sin...

Solyesh

•7 months ago

16 Replies

Hip replacement surgery

Has anyone had hip replacement surgery with ET jak 2 , on hydroxy and aspirin? I'm due for this in a few weeks with a pre op assessment in 2 weeks time....

Has anyone had hip replacement surgery with ET jak 2 , on hydroxy and aspirin? ...

Oscarsboy

•7 months ago

13 Replies

Leg Pain Elbows Pain

Hi Friends I have been on HU for 3 years. getting a lot of balance issues ,jLeg pain and elbow pain. I have my regular Consultant Appointment in 2 weeks time....

Hi Friends I have been on HU for 3 years. getting a lot of balance issues ,jLeg ...

Paraic2021

•7 months ago

7 Replies

Spring 2024 Covid Vaccine invitation.

Good evening everyone. I’m enquiring if anyone has been contacted with an invitation to have a Spring Covid vaccination booster and if so, how many are or have...

Good evening everyone. I’m enquiring if anyone has been contacted with an invita...

azaelea

•7 months ago

31 Replies

Still undecided about Inteferon

As my clinic appointment approaches I am getting more and more undecided about Interferon. I am currently on 500mg Hydroxycarbomide daily and platelets stay in...

As my clinic appointment approaches I am getting more and more undecided about I...

jodary

•7 months ago

20 Replies

Needing some good vibes

This is a big week! Having labs today which really isn’t a big deal but hoping all is stable. But Friday I will finally have that MRI. I am scared to death....

This is a big week! Having labs today which really isn’t a big deal but hoping ...

KLCTJC

•7 months ago

18 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for April 2024

malaria

High Ferritin, LDH & ALT

Shingles Jab

Getting tested for autoimmune diseases

Malaria tablets

Team alpha!!!!

Hello from Syracuse, NY!!

Has anyone used FSM for joint pain and disc bulges with an MPN

Changing meds

2nd generation Jak-i's, what's up?

can I have your thoughts

my apologies for the repetition of posts 🤷‍♀️

Update on heart problems

Jak2 Allele Burden reveal

Good results, hoping continues

JAK2 V617F Allele Burden and Thrombotic Events in Patients w/ JAK2 V617F Positive PCV/ET @ High Risk of Thrombosis

PV, Botox & Blood Thinners

Treatment Change, question

Sugar and alcohol…?

Sugar and alcohol…?

Sugar and alcohol…?

Spring Covid Vaccines Reply .

Leg pain.

Medical exemption certificate

Good News on Peg

Hip replacement surgery

Leg Pain Elbows Pain

Spring 2024 Covid Vaccine invitation.

Still undecided about Inteferon

Needing some good vibes

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