Posts - MPN Voice | HealthUnlocked

MPN Voice

10,722 members • 14,842 posts

All posts for October 2022

Intestinal issues with Ruxolitinib/Jakafi

I'm now in my third month on Ruxolitinib/Jakafi; blood numbers are looking good so far. However, I've been experiencing some intestinal issues. I've been...

I'm now in my third month on Ruxolitinib/Jakafi; blood numbers are looking good...

sbs_patient

•2 years ago

14 Replies

3 jab

Hi all well I hope you are all doing well. I took 3rd Pegysas injection last night and feel OK today. Last 2 I felt rough, but woke up today feeling good....

Hi all well I hope you are all doing well. I took 3rd Pegysas injection last ni...

JeniMac

•2 years ago

17 Replies

still getting my head around ET

hi guys this might seem a sully question , but have a got ET and the jac 2 gene 🧬 for life , I got the hospital later to get my bloods done , I got diagnosed...

hi guys this might seem a sully question , but have a got ET and the jac 2 gene...

Staroftheday

•2 years ago

4 Replies

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Essential thrombocythemia

When my daughter was 12 years she started to have migraine. At the same time the platels went high, Between 400 -539 for 11 months. Then they fall back to...

When my daughter was 12 years she started to have migraine. At the same time the...

Gurimalla

•2 years ago

13 Replies

I'm new here

Hello. I'm new here. I have PRV diagnoses from 2016, but I had for more than 10 years. I haven't have any drugs yet, but I could recive now Besremi. A have...

Hello. I'm new here. I have PRV diagnoses from 2016, but I had for more than 10...

mojpes

•2 years ago

7 Replies

flu and covid 2 weeks apart

l still have awful pains in my upper back, lm linking these to covid jab Moderna Its so painful not sure what to take to releive it, the jab was...

l still have awful pains in my upper back, lm linking these to covid jab Mode...

Hidden

•2 years ago

8 Replies

Living With MPNs day.

Anyone heading to the MPNVoice Living With MPNs day in London on 5th November? It’s nice to meet and say hello, putting a face to a username. However, as...

Anyone heading to the MPNVoice Living With MPNs day in London on 5th November? ...

MFBMT2011

•2 years ago

2 Replies

Inflamed Thigh and Glute Muscles

I have been diagnosed with Myelofibrosis, and apart from initial symptoms of night sweats, my first significant physical symptoms were rapid onset of shortness...

I have been diagnosed with Myelofibrosis, and apart from initial symptoms of nig...

TimGS

•2 years ago

27 Replies

Hematocrit question

Currently whenever my Hematocrit is over 44 I get a phlebotomy as I don't want it to get over 45. Two weeks ago it was 43.3 with my RBC at 5.77. Today my...

Currently whenever my Hematocrit is over 44 I get a phlebotomy as I don't want i...

wateron

•2 years ago

30 Replies

Experiencing some darkening on the nails and sometimes numbness on the hands

I started taking hydrocarbamide 1000 mg everyday this August and after a month I have an additional 500mg Monday , Wednesday and Friday rest of the day...

I started taking hydrocarbamide 1000 mg everyday this August and after a month ...

kid12kg

•2 years ago

8 Replies

response to fedratinib

Those of you on fedratinib: how long before you saw a response to quelling symptoms of MF especially itching? Those of you that had side effects from the...

Those of you on fedratinib: how long before you saw a response to quelling symp...

Scaredy_cat

•2 years ago

6 Replies

Did we ever get an answer to the person who had PV and Anemia?

I have a new Hemoc Doc and my HCT is 45, my old doc wanted me under 45. Since I was HCT 45 this week I called to ask about a TP. He thought now then said...

I have a new Hemoc Doc and my HCT is 45, my old doc wanted me under 45. Since...

Limitpusher

•2 years ago

3 Replies

Numb fingers

Just after I woke up my ring finger became numb. Is this normal with HU?

Winchie

•2 years ago

14 Replies

Feedback from Haematologist

I’m a bit confused! I’ve just had the routine telephone appointment with the haematologist. I’m on Pegasys 90mcg every three weeks. I’ve been told I have pre...

I’m a bit confused! I’ve just had the routine telephone appointment with the hae...

hall2

•2 years ago

27 Replies

pegasys interferon injections & flu jab

Hello there, Just need some advice. I've been taking my interferon injections every Tues eve for a few months & am due a flu jab. I would imagine it's not...

Hello there, Just need some advice. I've been taking my interferon injections...

keviekev

•2 years ago

7 Replies

Skin irratation

Hi all me again. Well as you all know I have started taken Peg 2 in 1st one I felt rough 2nd not so much. I otok injections on Monday woke up today and my...

Hi all me again. Well as you all know I have started taken Peg 2 in 1st one I f...

JeniMac

•2 years ago

13 Replies

Besremi

Hello all I have started Besremi and as of today no major side affects. Just a question I don't see this as a problem but wondering in anyone else experiencing...

Hello all I have started Besremi and as of today no major side affects. Just a q...

josup26

•2 years ago

18 Replies

Unable to work

This is a long post. I am just looking for answers and maybe someone here has had something similar: I have ET and I had an episode on September 19th while at...

This is a long post. I am just looking for answers and maybe someone here has ha...

Ssssfamily

•2 years ago

27 Replies

Not too bad 2nd Peg

Thank you everyone for the positive feedback. I took 2nd Peg last night. Didn't sleep well but never have been good sleeper. Wa a s huge improvement on last...

Thank you everyone for the positive feedback. I took 2nd Peg last night. Didn't ...

JeniMac

•2 years ago

6 Replies

Shingles

Grrr, a few weeks ago got cellulitis around my forehead, then I had shingles, affecting the facial nerve left hand side, painful as hell.

Grrr, a few weeks ago got cellulitis around my forehead, then I had shingles, a...

shiftzz

•2 years ago

13 Replies

Besremi on an outpatient basis

Hi, Just curious, has anyone in the USA on medicare been able to get besremi injections as an outpatient? This could dramatically reduce the cost...

Hi, Just curious, has anyone in the USA on medicare been able to get besremi...

Jamesxyz

•2 years ago

22 Replies

Brain fog, fatigue and burning feet.

Diagnosed with ET Jak 2 in August 2022. Started on Hydroxyurea 500mg per day and 81 mg aspirin twice per day. My platelets have been high for years but...

Diagnosed with ET Jak 2 in August 2022. Started on Hydroxyurea 500mg per day an...

KHardey

•2 years ago

9 Replies

2 peg injection

Hi hope every one is well. Just took my 2nd Peg injection. I have left injection out of fridge 20 mins before taken it. Took 2 paracetamol. Going to take...

Hi hope every one is well. Just took my 2nd Peg injection. I have left injecti...

JeniMac

•2 years ago

9 Replies

Interferon transportation on flights

We are hoping to fly to Thailand next year, just been in contact with the airline regarding keeping the interferon refrigerated. They said no, doe to Health...

We are hoping to fly to Thailand next year, just been in contact with the airlin...

shiftzz

•2 years ago

16 Replies

old scars flaring up!

I’m just putting it out there as I am not sure that I may have read something on this forum but I could be wrong. I had a hysterectomy 20 years ago but today...

I’m just putting it out there as I am not sure that I may have read something on...

Grendall

•2 years ago

1 Reply

Diagnosed as gout but I don't think it is

Good Evening all hope you are well After reading the symptoms of gout I think the doctor may be incorrect My doctor diagnosed me with gout on 30/9/2022...

Good Evening all hope you are well After reading the symptoms of gout I think t...

harryhonda25

•2 years ago

3 Replies

Blood cell size and shape data?

I've now been on Rux/Jakafi for about six weeks. My blood count numbers haven't changed in the last two weeks, so may be stabilizing at or near normal levels....

I've now been on Rux/Jakafi for about six weeks. My blood count numbers haven't ...

sbs_patient

•2 years ago

5 Replies

Flying & drugs re X-ray machines

can you flyers in our group on Peg injections or similar liquid drugs tell me how we get around X-ray machine . I read somewhere that X-ray machine could...

can you flyers in our group on Peg injections or similar liquid drugs tell me ho...

Exeter21

•2 years ago

8 Replies

Polycythemia

Hi all 👋 My story is still relatively new and I haven't got much info really. I went to my doctors back in May as I didn't feel quite right with myself...

Hi all 👋 My story is still relatively new and I haven't got much info reall...

Gamerboy88

•2 years ago

4 Replies

Iron deficiency from venesection how low is too low advice please

Hi, I have PV, recently diagnosed in June and on venesection only so far and aspirin, meds route being decided just waiting for next consultation on 24th...

Hi, I have PV, recently diagnosed in June and on venesection only so far and a...

Cityreach

•2 years ago

14 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for October 2022

Intestinal issues with Ruxolitinib/Jakafi

3 jab

still getting my head around ET

Essential thrombocythemia

I'm new here

flu and covid 2 weeks apart

Living With MPNs day.

Inflamed Thigh and Glute Muscles

Hematocrit question

Experiencing some darkening on the nails and sometimes numbness on the hands

response to fedratinib

Did we ever get an answer to the person who had PV and Anemia?

Numb fingers

Feedback from Haematologist

pegasys interferon injections & flu jab

Skin irratation

Besremi

Unable to work

Not too bad 2nd Peg

Shingles

Besremi on an outpatient basis

Brain fog, fatigue and burning feet.

2 peg injection

Interferon transportation on flights

old scars flaring up!

Diagnosed as gout but I don't think it is

Blood cell size and shape data?

Flying & drugs re X-ray machines

Polycythemia

Iron deficiency from venesection how low is too low advice please

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Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for October 2022

Intestinal issues with Ruxolitinib/Jakafi

﻿3 jab

still getting my head around ET

Essential thrombocythemia

I'm new here

﻿flu and covid 2 weeks apart

Living With MPNs day.

Inflamed Thigh and Glute Muscles

Hematocrit question

Experiencing some darkening on the nails and sometimes numbness on the hands

﻿response to fedratinib

Did we ever get an answer to the person who had PV and Anemia?

Numb fingers

Feedback from Haematologist

﻿pegasys interferon injections & flu jab

﻿Skin irratation

Besremi

Unable to work

Not too bad 2nd Peg

Shingles

Besremi on an outpatient basis

Brain fog, fatigue and burning feet.

2 peg injection

Interferon transportation on flights

old scars flaring up!

Diagnosed as gout but I don't think it is

Blood cell size and shape data?

Flying & drugs re X-ray machines

Polycythemia

Iron deficiency from venesection how low is too low advice please

Search posts

Pinned Posts

Latest poll

What age were you when your MPN was diagnosed?

Topics

Archive

3 jab

flu and covid 2 weeks apart

response to fedratinib

pegasys interferon injections & flu jab

Skin irratation