Posts - MPN Voice | HealthUnlocked

MPN Voice

10,445 members • 14,398 posts

All posts for September 2021

vaccine effect of lowering my platelets is reversing

ET, Jax2, hydroxy. After the vaccine (Pfizer) my platelets dropped and I was able to cut my weekly hydroxy by 20%. It's reversing now and platelets are going...

ET, Jax2, hydroxy. After the vaccine (Pfizer) my platelets dropped and I was ab...

h2ogal

•3 years ago

4 Replies

Third covid vaccine tomorrow

Hi All, my GP surgery has booked me in for a third Covid vaccine tomorrow. I have ET Jak2+ and am on Pegasys. Feeling very relieved! Lou xx

Hi All, my GP surgery has booked me in for a third Covid vaccine tomorrow. I hav...

Loubielou

•3 years ago

17 Replies

Extremely worried about the value of IL-6 and IL-8 explored, what should I do?

I'm 34 years old only, and have been in MF3 since 2017 diagnosed. Very bad state I was megalosplenia when I diagnosed. Now I take Ruxolitinib 7.5mg/bid /day...

I'm 34 years old only, and have been in MF3 since 2017 diagnosed. Very bad state...

merlisa

•3 years ago

5 Replies

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Frustrated

So as I wrote previously I am changing Haemotoligist some are saying why after all these years well let's tell you my last conversation with haematology nurse...

So as I wrote previously I am changing Haemotoligist some are saying why after a...

JeniMac

•3 years ago

42 Replies

What is the impact of MPNs on the Immune System?

Hello! Just wondering if anyone else struggles with being constantly unwell. Over the past few years I have had more colds than I can count, a few bouts of...

Hello! Just wondering if anyone else struggles with being constantly unwell. O...

CalL1981

•3 years ago

5 Replies

Switched from Hydroxyurea to Pegylated Interferon (PEGASYS)

Hi, I'm wanting to hear from people who have changed treatments. I'm especially keen to know what doses you were taking of HU and what doses of PI. I have...

Hi, I'm wanting to hear from people who have changed treatments. I'm especially ...

SuzanneMPD

•3 years ago

36 Replies

DNA Saliva test and Hydroxycarbamide?

A strange question to ask. I'm wondering whether anyone here has successfully given a DNA Saliva test for Family History research and is currently taking...

A strange question to ask. I'm wondering whether anyone here has successfully gi...

Kari1961

•3 years ago

12 Replies

Hopeless due to my MPN

Hi! Everyone, I feel like i'm useless to my job because i always feel tired, bone pain, etc. The worst thing is that I cannot concentrate on my job. I feel...

Hi! Everyone, I feel like i'm useless to my job because i always feel tired, bon...

Anonymous022719-

•3 years ago

16 Replies

"I wish I'd had this when I was diagnosed"

An email from Blood Cancer UK popped into my inbox this morning advising of a new booklet that they have produced for people recently diagnosed with some sort...

An email from Blood Cancer UK popped into my inbox this morning advising of a ne...

Ovingite

•3 years ago

1 Reply

Is this right?

Have I got this right does anyone know? I understand that chronic leukaemia patients (including MPNs) who are on treatment such as Jak2 inhibitors should be...

Have I got this right does anyone know? I understand that chronic leukaemia pati...

beetle

•3 years ago

6 Replies

3rd primary covid vaccine eligibility (uk)

Does anyone understand the updated JCVI guidance for vaccinating immunosupressed individuals with a third primary dose dated 9 September 2021? There is a copy...

Does anyone understand the updated JCVI guidance for vaccinating immunosupressed...

MWxxxx

•3 years ago

20 Replies

Immunities for two shot Pfizer vaccine measurement

I had the Pfizer Two shot vaccine back in February 2021. I tried to talk to LabCorp about the results. They said they could not give out any information. My...

I had the Pfizer Two shot vaccine back in February 2021. I tried to talk to LabC...

Daisybobo

•3 years ago

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Appointment with haematologist today

Good afternoon dear people, I have been today for my 3 months appointment with my haematologist. So today my platelets number is 433 from 580 in June. I am...

Good afternoon dear people, I have been today for my 3 months appointment with ...

Cinemon

•3 years ago

17 Replies

Third Dose progress

Hello My understanding is that as someone with ET I should be getting a third Covid19 jab. As I have heard nothing (14/09/21) I asked my GP practice what was...

Hello My understanding is that as someone with ET I should be getting a third Co...

quanglewangle

•3 years ago

4 Replies

Pre mf

Does anyone take Hydrea for pre fibrotic mf with high platelets?

otisthedog

•3 years ago

14 Replies

D47.1 ХМПЗ

Хочется просто пообщаться с теми, у кого аналогичный диагноз.

misterflip

•3 years ago

2 Replies

What indicates anaemia

Can anybody shed any light on my blood count please? My red blood count is low, hct 37 and my haematologist said it's nothing to worry about but I am...

Can anybody shed any light on my blood count please? My red blood count is low,...

JP1952

•3 years ago

17 Replies

What is a strong antibody response to covid 19. I took the simiquant test. I was positive range 169? At labcorp

Antibody test for covid 19

Daisybobo

•3 years ago

11 Replies

Shooting pains in my stomach

Hi all am just wondering if anyone here gets like stabbing shooting pains in stomach ive been getting them quite alot this week,and in my hands only last for...

Hi all am just wondering if anyone here gets like stabbing shooting pains in sto...

Jody00

•3 years ago

6 Replies

Future of PV Treatments Centers Around More Tailored Approaches

“Treatment of patients with PV should be, in my opinion, tailored based on the risk,” Francesco Passamonti, MD, said in his presentation at the Society of...

“Treatment of patients with PV should be, in my opinion, tailored based on the r...

Manouche

•3 years ago

7 Replies

BMB tomorrow

Hello, all, as some of you know. I’m having a BMB tomorrow. It’s my second one in 2 years and my third one since 2008. I’m post Et Mf and for some reason for...

Hello, all, as some of you know. I’m having a BMB tomorrow. It’s my second one ...

Cja1956

•3 years ago

32 Replies

Update 5.9 = More good news

Had my updated CBC and CMP on 05/09. The news is uniformly good. HCT dropped a bit to 43.8%. PLT is up a bit to 436, but still WNL LYMPH up a bit to 1.13...

Had my updated CBC and CMP on 05/09. The news is uniformly good. HCT dropped a...

hunter5582

•3 years ago

45 Replies

Curcumin

I’m taking 800mg curcumin daily(2 tablets:400mg each)primarily for joint pain,Does anyone have any preference for taking this? Thanks

I’m taking 800mg curcumin daily(2 tablets:400mg each)primarily for joint pain,Do...

Bobadog

•3 years ago

17 Replies

Help

Looking for some advice from an experienced ET sufferer. I have recently changed from Hydroxy to Peg Int, and as a result was feeling so much better that I...

Looking for some advice from an experienced ET sufferer. I have recently change...

CK79

•3 years ago

8 Replies

Changing haemotoligist

Hi I was diagnosed with ET with fibrotic changes and jak2 13 years ago. I have decided to change my hospital and have my first appointment end of month. Just...

Hi I was diagnosed with ET with fibrotic changes and jak2 13 years ago. I have ...

JeniMac

•3 years ago

22 Replies

Changing the Conversation About MPNs

From the folks at the MPN Research Foundation for MPN Awareness Day. A really great presentation. Presentation by Ruben Mesa and Claire Harrison. Moderated...

From the folks at the MPN Research Foundation for MPN Awareness Day. A really g...

hunter5582

•3 years ago

12 Replies

Blood test battle and more

Hi everyone, I have found posts on this page hugely helpful and calming since diagnosis. Haven’t posted before and apologise in advance as this is a bit of an...

Hi everyone, I have found posts on this page hugely helpful and calming since d...

Naynay81

•3 years ago

17 Replies

Side effects from Drugs

After 15 years with ET I am having effects from something ( Hydroxy, covid, covid booster or maybe just the ET itself ) After starting back on Hydrea 3 days...

After 15 years with ET I am having effects from something ( Hydroxy, covid, covi...

MDI55

•3 years ago

4 Replies

SEPTEMBER BLOOD CANCER AWARENESS MONTH THANK YOU TO OUR AMAZING MPN VOICE FUNDRAISERS

September is in full swing and our wonderful MPN Voice Community have really embraced the “September Blood Cancer Awareness Month Challenge”. Without people...

September is in full swing and our wonderful MPN Voice Community have really emb...

Mazcd

Partner•3 years ago

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Been on healthunlock for sometime but haven’t posted. Recently put on Jakafi for pre PV. would like he hear from others.

New to Jakafi

Normangirl

•3 years ago

12 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for September 2021

vaccine effect of lowering my platelets is reversing

Third covid vaccine tomorrow

Extremely worried about the value of IL-6 and IL-8 explored, what should I do?

Frustrated

What is the impact of MPNs on the Immune System?

Switched from Hydroxyurea to Pegylated Interferon (PEGASYS)

DNA Saliva test and Hydroxycarbamide?

Hopeless due to my MPN

"I wish I'd had this when I was diagnosed"

Is this right?

3rd primary covid vaccine eligibility (uk)

Immunities for two shot Pfizer vaccine measurement

Appointment with haematologist today

Third Dose progress

Pre mf

D47.1 ХМПЗ

What indicates anaemia

What is a strong antibody response to covid 19. I took the simiquant test. I was positive range 169? At labcorp

Shooting pains in my stomach

Future of PV Treatments Centers Around More Tailored Approaches

BMB tomorrow

Update 5.9 = More good news

Curcumin

Help

Changing haemotoligist

Changing the Conversation About MPNs

Blood test battle and more

Side effects from Drugs

SEPTEMBER BLOOD CANCER AWARENESS MONTH THANK YOU TO OUR AMAZING MPN VOICE FUNDRAISERS

Been on healthunlock for sometime but haven’t posted. Recently put on Jakafi for pre PV. would like he hear from others.

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