Posts - MPN Voice | HealthUnlocked

MPN Voice

10,445 members • 14,398 posts

All posts for August 2020

Knee inflammation

Hi looking for some advice. Diagnosed with PV 2.5yrs ago and been on Peginterferon for the last 2years, I am 44yrs old. My bloods are all normal if not a bit...

Hi looking for some advice. Diagnosed with PV 2.5yrs ago and been on Peginterfer...

Poppy112

•4 years ago

5 Replies

Bruising and Injuries!!

Good evening, i hope everyone is well? It had just dawned on me today after coming over the handlebars of my bike, hitting the ground very heavy and entangling...

Good evening, i hope everyone is well? It had just dawned on me today after comi...

Trocken

•4 years ago

14 Replies

Windy51

Hi I’m on Hydrea has anyone noticed a change in there complexion I have been using for 2 months and it has got pale but looks good I didn’t expect it I hope it...

Hi I’m on Hydrea has anyone noticed a change in there complexion I have been usi...

Windy51

•4 years ago

5 Replies

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MPN Patient Forum

Noticed that the link to the recording of the 2019 MPN Patient Forum was not working anymore. Here is a link to the MPN Education Foundation Site for the 2019...

Noticed that the link to the recording of the 2019 MPN Patient Forum was not wor...

hunter5582

•4 years ago

4 Replies

Welcome

Welcome all the new people who joined in the last few months, I appreciate you don’t want to be here but it is a good place to get help. We have heard from a...

Welcome all the new people who joined in the last few months, I appreciate you d...

MFBMT2011

•4 years ago

11 Replies

HYDROXYUREA

Hi everyone ... looks like I have to start the hydroxyurea... has anyone had nausea and vomiting at first ???? 🤢🤢

Hi everyone ... looks like I have to start the hydroxyurea... has anyone had ...

Hidden

•4 years ago

20 Replies

Hypertension

Was recently diagnosed with hypertension. 183 over 80. Have ET JAK positive. Anybody else have problems with high blood pressure? Doc doesn’t seem to know if...

Was recently diagnosed with hypertension. 183 over 80. Have ET JAK positive. An...

Scrollernut

•4 years ago

14 Replies

Does the nausea with HU diminish?

I have PCV and have generally been doing well with Pegasys except that its legendary itching has been a problem, especially in the hot, humid summer, so I...

I have PCV and have generally been doing well with Pegasys except that its legen...

pnArt

•4 years ago

19 Replies

Interferon and Liver Condition

Its been 5 weeks I have switched to Interferon from Hydrea and found out that my SGPT(ALT) and SGOT (AST) is high and increasing rapidly. Anyone faced such...

Its been 5 weeks I have switched to Interferon from Hydrea and found out that my...

MrThara

•4 years ago

5 Replies

New to Group

Hi. Just checking in for the first time. Was diagnosed with MPN last month and started hydroxyurea yesterday.

Hi. Just checking in for the first time. Was diagnosed with MPN last month and s...

Smile2

•4 years ago

17 Replies

Red spots under skin

Good morning all. Advice please. I have prv jak 2 and portal vein thrombosis and taking hydroxycarbamide and warfarin. Yesterday I noticed i have small red...

Good morning all. Advice please. I have prv jak 2 and portal vein thrombosis and...

poly2

•4 years ago

17 Replies

Stye issues

Good morning all ! I keep getting styles in my eyes. Anyone else having this problem? I’ve been on antibiotics quite frequently for this. Any tips would be...

Good morning all ! I keep getting styles in my eyes. Anyone else having this pro...

ggrana

•4 years ago

6 Replies

High red and white blood cells

Hey, I'm new here and have recently been for blood tests, my red blood cell count was slightly raised a year ago as was my platelets, this year the white count...

Hey, I'm new here and have recently been for blood tests, my red blood cell coun...

nicky153

•4 years ago

14 Replies

Thank you all

I wanted to thank everyone who replied to my post about ibuprofen & hydroxy. You are all so kind and I am blessed to be part of this community.

I wanted to thank everyone who replied to my post about ibuprofen & hydroxy. Yo...

h2ogal

•4 years ago

2 Replies

MPN Voice Patients’ ‘virtual’ forum, London - VIDEOS now available

This MPN Voice patients’ ‘virtual’ forum held on Saturday 1st August 2020, was hosted by the Guy’s team and featured updates on both COVID and MPN research, as...

This MPN Voice patients’ ‘virtual’ forum held on Saturday 1st August 2020, was h...

Mazcd

Partner•4 years ago

8 Replies

Pain in the coxis, hips, groins and the whole legs. Do you have?

Do you suffer of it? Is it due to PV? If you take Interferon, Pegasys, do it finish with this pain or not? And Hydroxiurea? What drug is recommended with...

Do you suffer of it? Is it due to PV? If you take Interferon, Pegasys, do it fi...

SoledadBarcelona

•4 years ago

8 Replies

Is Aching at night a symptom of ET

I have not yet been diagnosed with ET but platelets increasing over last 3 years now over 600 x 10 to the 9th. I am JAK2 positive. Started myself on low dose...

I have not yet been diagnosed with ET but platelets increasing over last 3 years...

Planti

•4 years ago

23 Replies

Ibuprofen & Hydroxy

Just had my appendix out and Doctors don't want to give too many pain meds so have told be to take ibuprofen in between doses of percocet (has acetaminophen in...

Just had my appendix out and Doctors don't want to give too many pain meds so ha...

h2ogal

•4 years ago

16 Replies

Long Covid

Anyone with everlasting symptoms of Covid? I think I had mild Covid in April. Then had shingles in May. My worst symptoms are the high fever and night sweats...

Anyone with everlasting symptoms of Covid? I think I had mild Covid in April. Th...

EleanorPV

•4 years ago

17 Replies

Peg and skin rash?

Patients who take Peg - one of my injection sites has developed itchy pinhead blisters. I’ve applied topical antihistamine and eczema creams but they’re not...

Patients who take Peg - one of my injection sites has developed itchy pinhead bl...

LucyGeering

•4 years ago

7 Replies

NHS coronavirus trials

I have just signed up to be contacted regarding the NHS coronavirus trials. It remains to be seen whether they get back to me on the basis of the info I have...

I have just signed up to be contacted regarding the NHS coronavirus trials. It r...

friendofpiglet

•4 years ago

11 Replies

MDS?

Originally diagnosed w ET. Was on HU and then taken off after 18 mos due to anemia. Platelets have remained low normal but HCT have continued to drop. Anemia...

Originally diagnosed w ET. Was on HU and then taken off after 18 mos due to ane...

Kerri2

•4 years ago

5 Replies

Adeyababa with ET

Hi everyone, I was diagnosed for Et over a year and am on Asprin 100mg per day. Last week my platelet number goes to 1.2 million Hi everyone, I was diagnosed...

Hi everyone, I was diagnosed for Et over a year and am on Asprin 100mg per day. ...

Adeyabeba

•4 years ago

15 Replies

Gout and ibrutinib

Has anyone experienced gout while on ibrutinib

2020harper

•4 years ago

4 Replies

Hydrea

Hi I was scared and still am because of Hydrea but I have felt better since being on it I have finished my first bottle of 100 today it’s been 2 months today...

Hi I was scared and still am because of Hydrea but I have felt better since bei...

Windy51

•4 years ago

12 Replies

MPN escape hatch!

If you have an hour or so to spare and would like to try something different, you might enjoy this ......

If you have an hour or so to spare and would like to try something different, yo...

JaK2ET

•4 years ago

1 Reply

Hydrea

Have ET only since February so still in the ‘trying’ stage. Started out with 500/mg every day and in two weeks count went down from 586 to mid 200’s so we...

Have ET only since February so still in the ‘trying’ stage. Started out with ...

Scrollernut

•4 years ago

5 Replies

ET and Spitting feathers, as my mother would say.

It took a lot of work to get my GP to provide the shielding letter, in the end I had to get my hospital consultant to contact him, but eventually it arrived....

It took a lot of work to get my GP to provide the shielding letter, in the end I...

eastwood1932

•4 years ago

9 Replies

How to delete other forums

Can any one help please . 2 forums appeared that I don’t want but don’t know how to delete Thanks

Can any one help please . 2 forums appeared that I don’t want but don’t know how...

Mostew

•4 years ago

2 Replies

Hesitant to take hydroxurea

Hi everyone I've been dealing with ET for 20 yrs now, I'm 52 I have been running between 600-800 with no medications When I was diagnosed at 32yrs old they...

Hi everyone I've been dealing with ET for 20 yrs now, I'm 52 I have been runni...

Lorid68

•4 years ago

55 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for August 2020

Knee inflammation

Bruising and Injuries!!

Windy51

MPN Patient Forum

Welcome

HYDROXYUREA

Hypertension

Does the nausea with HU diminish?

Interferon and Liver Condition

New to Group

Red spots under skin

Stye issues

High red and white blood cells

Thank you all

MPN Voice Patients’ ‘virtual’ forum, London - VIDEOS now available

Pain in the coxis, hips, groins and the whole legs. Do you have?

Is Aching at night a symptom of ET

Ibuprofen & Hydroxy

Long Covid

Peg and skin rash?

NHS coronavirus trials

MDS?

Adeyababa with ET

Gout and ibrutinib

Hydrea

MPN escape hatch!

Hydrea

ET and Spitting feathers, as my mother would say.

How to delete other forums

Hesitant to take hydroxurea

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