Posts - MPN Voice | HealthUnlocked

MPN Voice

10,445 members • 14,398 posts

All posts for September 2021

My HCT was low for me..help.

I have PV. Not taking any meds for it yet. I had a phlebotomy on 8-10. I normally don't get a CBC for 2-3 months after a PB to allow my HCT to get above 42...

I have PV. Not taking any meds for it yet. I had a phlebotomy on 8-10. I normall...

Elizka

•3 years ago

6 Replies

Covid booster jab done

Hi all, Gp called me in for my covid (Pfizer) booster jab yesterday. Just the usual sore arm. I'm now as protected as I can be! I work for the nhs and...

Hi all, Gp called me in for my covid (Pfizer) booster jab yesterday. Just the us...

Redsab7

•3 years ago

17 Replies

Sodabread

Hi all the people that replied to my post - all very helpful. I had ET for 10 years which then progressed to MF for 10 years. I was on Hydroxy but have been...

Hi all the people that replied to my post - all very helpful. I had ET for 10 y...

Sodabread

•3 years ago

2 Replies

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Appointments

Well I was supposed to have my appointment over the phone on 21st September I waited an hour nothing, so I rang the appointments line said I cancel my...

Well I was supposed to have my appointment over the phone on 21st September I wa...

Jody00

•3 years ago

5 Replies

Update on BMB

Hello, all, as many of you know, I had my second BMB recently. I got my written report a couple days later with a note from my doctor saying to make an...

Hello, all, as many of you know, I had my second BMB recently. I got my writte...

Cja1956

•3 years ago

5 Replies

Cramps

Lately I have been getting a lot of cramp in my hands and feet and don’t talk about the cramp in my calf. Shooting out of bed in agony like a bat out of hell....

Lately I have been getting a lot of cramp in my hands and feet and don’t talk ab...

Grizly

•3 years ago

15 Replies

Sodabread

Hi can anyone give me some information about how they felt starting on Ruxolitinib. My consultant wants to start me on this but I am not sure how I feel about...

Hi can anyone give me some information about how they felt starting on Ruxolitin...

Sodabread

•3 years ago

9 Replies

ET / Pre MF

Does anyone have ET/possible pre MF with a high platelet count? Any insight on progression? In the process of changing doctors. Thanks for any info.

Does anyone have ET/possible pre MF with a high platelet count? Any insight on ...

otisthedog

•3 years ago

6 Replies

Very Strange Condition

I have a health issue no doctor seems to want to deal with. Has anyone else ever heard of this? IT started about 3 years ago (nothing to do with Covid). It...

I have a health issue no doctor seems to want to deal with. Has anyone else eve...

Green1445

•3 years ago

1 Reply

Sleeplessness

Struggling to sleep on interferon, also really rough dry skin. On 45 been taking it for 9 weeks. Shattered !!!

Struggling to sleep on interferon, also really rough dry skin. On 45 been taking...

ciye

•3 years ago

10 Replies

Problem with inflammation of muscles

Does anyone here take Ashwagandha? I checked and there were no interactions with Hydrea. I have been having a great deal of muscular inflammation and cannot...

Does anyone here take Ashwagandha? I checked and there were no interactions with...

IrishHiker

•3 years ago

3 Replies

Depression and MPN ET

Hi everyone, it's me again.. I am depressed right now because i really want to leave my current job due to toxic people and they create stories about my Work...

Hi everyone, it's me again.. I am depressed right now because i really want to l...

Anonymous022719-

•3 years ago

4 Replies

Non-live shingles vaccine.

I am about to have it, 2 doses at least 8 weeks apart. Has anyone had it and what sort of side effects did you experience please?

I am about to have it, 2 doses at least 8 weeks apart. Has anyone had it and wha...

Ozziepig

•3 years ago

19 Replies

Pv and sore fingers

In the last 6 months I've developed sore fingers (may not be related to PV). They bruise easily when carrying anything. For the last 8 weeks I've had what...

In the last 6 months I've developed sore fingers (may not be related to PV). The...

EleanorPV

•3 years ago

8 Replies

Covid Vax Antibody Response/ Member Survey

The LLS study here suggests 97% of us should get some response from the initial vaccine set. My understanding is your WBC counts, esp Neut and Lyph, are...

The LLS study here suggests 97% of us should get some response from the initial...

EPguy

•3 years ago

24 Replies

Excellent resource

I just watched a presentation on the Patient Empowerment Network that was quite good. This organization has a large set of resources for many types of...

I just watched a presentation on the Patient Empowerment Network that was quite ...

hunter5582

•3 years ago

8 Replies

ET who else experiencing bone aching

ET who else experiencing bone aching And severe chest pain front and back also spine?

ET who else experiencing bone aching And severe chest pain front and back also s...

shiela23

•3 years ago

4 Replies

FDA hold PTG-300

Protagonist Therapeutics Reports FDA Clinical Hold on Rusfertide (PTG-300) Clinical Development Program due to tumorigenicity....

Protagonist Therapeutics Reports FDA Clinical Hold on Rusfertide (PTG-300) Clini...

HFrank

•3 years ago

1 Reply

WAITING

I have developed pain in my upper left back, very sore feet at night when I go to bed also numbness in my legs along with all the usual symptoms that go along...

I have developed pain in my upper left back, very sore feet at night when I go t...

indy22

•3 years ago

12 Replies

Advice dealing with chronic GVHD in the eyes and skin while trying to withdraw steroids

Hello everyone! I had a stem cell transplant last year and I am dealing with very uncomfortable Graft Versus Host Disease in my eyes and skin. The one in the...

Hello everyone! I had a stem cell transplant last year and I am dealing with ver...

lifeafterSCT

•3 years ago

2 Replies

Genomics commentary

Myelofibrosis Rampal: The major point I would say is that using genomics is now a standard of care and it is fundamental to the care of patients...

Myelofibrosis Rampal: The major point I would say is that using genomics is now ...

hunter5582

•3 years ago

5 Replies

Vaccine information

I have been offered a pneumonia vaccine I have ETJAK2 and am taking hydroxycarbamide and baby aspirin is it safe to have this I have had coved jab and flu jab...

I have been offered a pneumonia vaccine I have ETJAK2 and am taking hydroxycarba...

Tilly_Rose

•3 years ago

18 Replies

Et with calr gene

I finally got my diagnosis i have essential thrombocythemia with calr mutant gene, just started on an asprin platelets are at 690 would appreciate anyones...

I finally got my diagnosis i have essential thrombocythemia with calr mutant gen...

iffs

•3 years ago

1 Reply

Long Term INF Results

I've posted on other threads about INF treatments. I decided to start a new post since I just came across a most relevant study that should wake up our...

I've posted on other threads about INF treatments. I decided to start a new pos...

EPguy

•3 years ago

29 Replies

1st CBC Post Switch to Peg

As promised, providing my first CBC results since switch to Peg. As background, I am 52yo, ET Jak2+. Started on HU back in March - eventually got to...

As promised, providing my first CBC results since switch to Peg. As background, ...

Solyesh

•3 years ago

5 Replies

Third primary dose

Hello people - just found a printable gp letter on the bloodcancer uk site - if you go on the site + put in a search ‘document for gp third vaccine’ kit comes...

Hello people - just found a printable gp letter on the bloodcancer uk site - if ...

amhann

•3 years ago

20 Replies

Anyone ever have unusual RBC morphology after being sick (had a cold, etc.)?

I was sick for 3 whole weeks with a cold of some sort (luckily not COVID). Runny nose, sore throat, etc.. Put off my routine CBC because of this. Had the CBC...

I was sick for 3 whole weeks with a cold of some sort (luckily not COVID). Runny...

cmc_ufl

•3 years ago

7 Replies

Strange sensation in my left arm and hand, tightness and tingling

Hi I have ET and PMF and have just in the last few days been experiencing an odd sensation in my upper arm. A little like I've been thumped but also a bit...

Hi I have ET and PMF and have just in the last few days been experiencing an odd...

Bakerloo73

•3 years ago

10 Replies

Bloating

Does anyone have bloating problems with ET + JAK2 no pain no discomfort just bloating

Does anyone have bloating problems with ET + JAK2 no pain no discomfort just blo...

ChillyAsh34

•3 years ago

6 Replies

No more mutation test?

Hey guys! I just went to my hematologist and he said that only 50 to 60 percent of people will test positive on Jak2 mutation for ET, then here in our country...

Hey guys! I just went to my hematologist and he said that only 50 to 60 percent ...

Anonymous022719-

•3 years ago

5 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for September 2021

My HCT was low for me..help.

Covid booster jab done

Sodabread

Appointments

Update on BMB

Cramps

Sodabread

ET / Pre MF

Very Strange Condition

Sleeplessness

Problem with inflammation of muscles

Depression and MPN ET

Non-live shingles vaccine.

Pv and sore fingers

Covid Vax Antibody Response/ Member Survey

Excellent resource

ET who else experiencing bone aching

FDA hold PTG-300

WAITING

Advice dealing with chronic GVHD in the eyes and skin while trying to withdraw steroids

Genomics commentary

Vaccine information

Et with calr gene

Long Term INF Results

1st CBC Post Switch to Peg

Third primary dose

Anyone ever have unusual RBC morphology after being sick (had a cold, etc.)?

Strange sensation in my left arm and hand, tightness and tingling

Bloating

No more mutation test?

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