Posts - MPN Voice | HealthUnlocked

MPN Voice

10,445 members • 14,398 posts

All posts for February 2019

Stopping.....

Hi everyone, has anyone stopped all meds and gone back to life as it was before? I so want to get off this roundabout! I accept I am a bit depressed at...

Hi everyone, has anyone stopped all meds and gone back to life as it was befor...

Bridie123

•5 years ago

71 Replies

Good news stories: Are you doing okay and want to share that?

Hi all Love that there is so much help in here to get through tough stuff. Also really keen to hear the good news. From people who have had an MPN and going...

Hi all Love that there is so much help in here to get through tough stuff. Also...

ilovetoastwithbutter

•5 years ago

5 Replies

Anyone with a Primary Immune Deficiency or fatigue affected by Hydroxyurea?

Dear Folks, Does anyone here with an MPN also have a Primary Immune Deficiency (PID) like Common Variable Immune Deficiency (CVID? I was diagnosed with that...

Dear Folks, Does anyone here with an MPN also have a Primary Immune Deficiency ...

katiewalsh

•5 years ago

8 Replies

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Do I need 2nd opinion ?

Hi all, I am just wondering what to do at my next appt at the hospital in April. I do not now see the consultant haemotologist, I see a nurse? All she seems to...

Hi all, I am just wondering what to do at my next appt at the hospital in April....

Mardihel

•5 years ago

22 Replies

MPN Specialists in N Ireland

I have had ET for 4 years and am on hydroxycarbamide. My main symptom is v bad fatigue ( which in turn affects my mood and has led to depression. My...

I have had ET for 4 years and am on hydroxycarbamide. My main symptom is v bad...

rearwindow

•5 years ago

8 Replies

Symptoms - Newbie - Awaiting results re: BMB- ET

Hi all, I have posted a couple of times and found everyone very supportive. I'm a 55 yr old lady who has been under Haematolgy dept. for about a year. On...

Hi all, I have posted a couple of times and found everyone very supportive. I'm...

Hope2-Optimism

•5 years ago

10 Replies

Mpl mutation

I got results from genetic testing for ET and my mutation is mpl . I know this is the rarest of the three mutations and it is the one that most often morphs...

I got results from genetic testing for ET and my mutation is mpl . I know this ...

Cookiebaker

•5 years ago

19 Replies

Are these reports okay or not!

Hello, I have some blood reports in French please let me know if reports are okay or not, or please tell me if there is any other resources to know what...

Hello, I have some blood reports in French please let me know if reports are oka...

Bansari

•5 years ago

5 Replies

Painful digits!

I know several of mpn's sufferers have spoken of this problem before on here about our fingers & toes turning blue & painful. Researching it the only...

I know several of mpn's sufferers have spoken of this problem before on here abo...

Tico

•5 years ago

54 Replies

ET potentially becoming MF

Hi there, I was diagnosed officially with ET when I was 20 although it was picked up when I was 15! I was a bit of a anomaly and so spent 18 months being a...

Hi there, I was diagnosed officially with ET when I was 20 although it was picke...

Glagirl

•5 years ago

7 Replies

Travel insurance and the EHIC card

All, Even though I take out travel insurance I just wondered how much the EHIC card covers you for. Obviously things might change after March 29th but I just...

All, Even though I take out travel insurance I just wondered how much the EHIC c...

MarkD6701

•5 years ago

3 Replies

Hanging in there

I'm a 63 year old female diagnosed with PV about nine and a half years ago. I have been on hydrea since then. In the beginning I didn't really feel that much...

I'm a 63 year old female diagnosed with PV about nine and a half years ago. I ha...

Stateofmine

•5 years ago

8 Replies

Surgery time

Some of you may remember I posted in December about a mass they had found on the site of my removed kidney due to renal cell carcinoma. Well the upshot is that...

Some of you may remember I posted in December about a mass they had found on the...

conno61

•5 years ago

32 Replies

HU side effect

Recently increased dose of HU and suffered bloating and wind The symptoms eventually settled down but at the moment I have stomach cramps and bloating in the...

Recently increased dose of HU and suffered bloating and wind The symptoms eventu...

Bakkenist

•5 years ago

5 Replies

HU vs Pegalated Interferon?

Hi Everyone. I'm 35 and have recently been diagnosed JAK2 positive ET. I'm currently on 1500 HU and aspirin daily. It's making me feel pretty rubbish. I would...

Hi Everyone. I'm 35 and have recently been diagnosed JAK2 positive ET. I'm curr...

Artelou

•5 years ago

27 Replies

Twin boys!

Hi everyone! Just thought those of you out there who know me might like to know that I’m finally a granny -twin boys at 6lb and 7lbs. 3rd round ivf so very...

Hi everyone! Just thought those of you out there who know me might like to know...

Loubprv

Volunteer•5 years ago

58 Replies

Day one..

So I begin my HU journey today. Have to take 500mg and an alipurinol tablet for a week only. See my consultant in 2 weeks. Platelets are 1645.. The hu is a...

So I begin my HU journey today. Have to take 500mg and an alipurinol tablet for ...

heathermc

•5 years ago

13 Replies

Love is : Valentines Day Together in Clinic. . 💘

It's been some time since I posted but I keep in touch with the posts. It's part of me moving on in my lengthy recovery. I know from what I see that there are...

It's been some time since I posted but I keep in touch with the posts. It's part...

JediReject

•5 years ago

76 Replies

Headaches?

I keep getting headaches right on the top of my head, does anyone else have these, or is it completely unrelated to ET?

I keep getting headaches right on the top of my head, does anyone else have thes...

lizzziep

•5 years ago

13 Replies

Et

My name is Jennifer i am 68 i was diagnosed with ET 3 years ago, i am triple negative i am on and Clopidogel to thin my blood and iam high risk for a stroke

My name is Jennifer i am 68 i was diagnosed with ET 3 years ago, i am triple neg...

Jgsearle

•5 years ago

5 Replies

Cough medicine

Does anyone taken cough medicines on hydroxy, Anagrelide and aspirin. I am on all 3 meds and my cough is now getting on my nerves. Thank you.

Does anyone taken cough medicines on hydroxy, Anagrelide and aspirin. I am on al...

wendycu

•5 years ago

8 Replies

Chronic Support Group - Cardiff 6th March through Leukaemia Care. Other Support groups in UK

Hello. I found a Chronic Support Group through Leukaemia Care being held at Culverhouse Cross, Cardiff on 6th March 2.30-4.30. The kind co-ordinator emailed...

Hello. I found a Chronic Support Group through Leukaemia Care being held at Culv...

RedSunrise

•5 years ago

2 Replies

Zurich critical illness cover

My partner has recently been diagnosed with ET (JAK2+). We have a critical illness policy with Zurich and made a claim a few weeks ago. They seem to be...

My partner has recently been diagnosed with ET (JAK2+). We have a critical illne...

pianomanjc

•5 years ago

3 Replies

Polychythemia

At Dec'2010, I have treated for Polycythemia when my PCV was 54 but as informed earlier, I am not having any Mutations and spleen, heart and lungs are......

At Dec'2010, I have treated for Polycythemia when my PCV was 54 but as informed...

Selvamok

•5 years ago

2 Replies

Sometimes feel good and sometimes not

I was just diagnosed about 5 weeks ago with ET. I am 69. Blood work for Jak2 was negative. Waiting for CALR and MLP result. No bone marrow done yet. I...

I was just diagnosed about 5 weeks ago with ET. I am 69. Blood work for Jak2 w...

Cookiebaker

•5 years ago

7 Replies

"Devotions upon Emergent Occasions" - BMB results are in - PV confirmed not MF

Hi folks. Just to let you know I got a Grade 1 result and confirmation of PV not MF as feared. For now at least. Will wait to see Prof Clare in April before...

Hi folks. Just to let you know I got a Grade 1 result and confirmation of PV not...

ilovetoastwithbutter

•5 years ago

3 Replies

Still the waiting game..

It has been about three weeks since I was tested for the Jak2 mutation. I have had bad anxiety since I heard that's what they wanted to test me for due to my...

It has been about three weeks since I was tested for the Jak2 mutation. I have h...

BrandyC84

•5 years ago

8 Replies

ARE NPNS CLASSED AS A DISABILITY?

I was browsing the information on the npn site and read NPNS are classed as a disability. I just wanted to check Ive read this correctly?

I was browsing the information on the npn site and read NPNS are classed as a di...

Camelian

•5 years ago

6 Replies

Curcumin

I said I would update after discussion with Prof Harrison about turmeric/curcumin. She was not aware of it’s reported potential effects on Jak stat pathway and...

I said I would update after discussion with Prof Harrison about turmeric/curcumi...

beetle

•5 years ago

17 Replies

High MCV

Hi Everyone, Did anyone have consistently high MCV (mean corpuscles Volume) with Polycythemia is that possible high MCV in PV?

Hi Everyone, Did anyone have consistently high MCV (mean corpuscles Volume) with...

Vigiindia

•5 years ago

7 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for February 2019

Stopping.....

Good news stories: Are you doing okay and want to share that?

Anyone with a Primary Immune Deficiency or fatigue affected by Hydroxyurea?

Do I need 2nd opinion ?

MPN Specialists in N Ireland

Symptoms - Newbie - Awaiting results re: BMB- ET

Mpl mutation

Are these reports okay or not!

Painful digits!

ET potentially becoming MF

Travel insurance and the EHIC card

Hanging in there

Surgery time

HU side effect

HU vs Pegalated Interferon?

Twin boys!

Day one..

Love is : Valentines Day Together in Clinic. . 💘

Headaches?

Et

Cough medicine

Chronic Support Group - Cardiff 6th March through Leukaemia Care. Other Support groups in UK

Zurich critical illness cover

Polychythemia

Sometimes feel good and sometimes not

"Devotions upon Emergent Occasions" - BMB results are in - PV confirmed not MF

Still the waiting game..

ARE NPNS CLASSED AS A DISABILITY?

Curcumin

High MCV

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