Posts - MPN Voice | HealthUnlocked

MPN Voice

10,508 members • 14,501 posts

All posts for May 2022

5th jab

Just giving an update. I’ve had my 5th Jab now. I didn’t wait for a letter or text from the GP I just booked online, turned up and told her it was my 5th jab...

Just giving an update. I’ve had my 5th Jab now. I didn’t wait for a letter or te...

Jynx93

•2 years ago

13 Replies

Medication limit in Greece

Hello everyone, I was just wondering if any of you have taken medication to Greece recently. Now that we are out of the EU the rules state that you can only...

Hello everyone, I was just wondering if any of you have taken medication to Gree...

Jynx93

•2 years ago

19 Replies

Recent trip and Besremi effects

We went on our regular yearly camping trip to Grand Canyon last week. (See our micro RV at camp) It started ok but then I had the longest set of bad days...

We went on our regular yearly camping trip to Grand Canyon last week. (See our ...

EPguy

•2 years ago

35 Replies

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Hoilday turkey

Hi all ,am going on hoilday to Turkey in July am only on 75mg jak2 positive ET am just wondering does anyone know if I do need to get flight socks or tights...

Hi all ,am going on hoilday to Turkey in July am only on 75mg jak2 positive ET a...

Jody00

•2 years ago

14 Replies

Update: driving and bmb

Hi all. I had the biopsy yesterday. Didn’t get to pick a side but was able to drive home all the same. I agree the idea is much worse than the fact. I’m not...

Hi all. I had the biopsy yesterday. Didn’t get to pick a side but was able to dr...

Fjdjdjdjd

•2 years ago

6 Replies

Hopkins reschedule

So the other shoe dropped and I was notified by a chart message today that my June appointment with Dr. Braunstein was canceled and rescheduled to September...

So the other shoe dropped and I was notified by a chart message today that my Ju...

strangeland

•2 years ago

9 Replies

Besremi

Hello all, Always my go to site for some good insight. My Hematologist is talking about me considering Besremi. Thus far I have not been on any meds. He...

Hello all, Always my go to site for some good insight. My Hematologist is talkin...

josup26

•2 years ago

20 Replies

E.T. Serum Bilirubin Level

Hello friends, I have a question about bilirubin levels in E.T. I have been feeling pretty bad over the last 10 days with nausea and pain in my right side...

Hello friends, I have a question about bilirubin levels in E.T. I have been feel...

azaelea

•2 years ago

8 Replies

Pegasys jab

Super nurse jabbed me for the first time , in the stomach area , and demonstrated technique. Now I’m due to self-jab and am nervous of making a hash of it....

Super nurse jabbed me for the first time , in the stomach area , and demonstrate...

gilded

•2 years ago

10 Replies

Windy city?

Hi, anyone suffer too, bit delicate but I have trouble with wind these days, not sure if because on 3 500g Hydroxy? Anyone have any suggestions on what I...

Hi, anyone suffer too, bit delicate but I have trouble with wind these days, not...

Jennytheb

•2 years ago

32 Replies

Jakafi

Is there anyone that can tell me their experience with jakafi for PCV. I also have vitiligo and alopecia and Jak 2 inhibitors are helping people with those...

Is there anyone that can tell me their experience with jakafi for PCV. I also h...

JeanieRN

•2 years ago

3 Replies

Covid booster

I have had the covid vaccine, the booster, and then got covid. My gp doesn't think I should get another booster as he says they can cause blood clots, as per...

I have had the covid vaccine, the booster, and then got covid. My gp doesn't thi...

Skater69

•2 years ago

9 Replies

Received lateral flow tests that I didn't order

I've just received a pack of NHS lateral flow tests that I didn't order. The only thing I can think of is that because we have a health condition that means...

I've just received a pack of NHS lateral flow tests that I didn't order. The onl...

Hat3

•2 years ago

15 Replies

Peg affecting thyroid

Hello everyone -does anyone have experience of Peg-Inf affecting their thyroid function. I started Peg in August 2019, titration up to a dose of 90 weekly...

Hello everyone -does anyone have experience of Peg-Inf affecting their thyroid f...

Mymble

•2 years ago

7 Replies

Dreams

This is a strange question ,does anyone on hydroxycarbamide have weird dreams not exactly a scary nightmare but disturbing I have just started having some...

This is a strange question ,does anyone on hydroxycarbamide have weird dreams no...

ChillyAsh34

•2 years ago

27 Replies

Covid anti viral drugs

Hello all, when discussing my blood results with the specialist nurse (telephone consultation) I said I had recently had covid and she asked if I’d had the...

Hello all, when discussing my blood results with the specialist nurse (telephone...

lizzziep

•2 years ago

4 Replies

Bone marrow biopsy and driving

Hi all. I’ve got my first ever bone marrow biopsy on Monday. Turns out to be terrible timing and I’m going to be alone the day of and the days after. My...

Hi all. I’ve got my first ever bone marrow biopsy on Monday. Turns out to be ter...

Fjdjdjdjd

•2 years ago

14 Replies

Home Blood kits

Hi anyone have experience with home blood kits for MPN. Last lock down l whent months with a test for months such worry. Adiewon

Hi anyone have experience with home blood kits for MPN. Last lock down l whent...

Hidden

•2 years ago

5 Replies

Anemia on pegasys ET

Been on peg 19 months now, it's worked a bit re platelets, 700 tho rising again. , but my Haemoglobin is now 83 (that's 8.3 in US I think). So I feel very...

Been on peg 19 months now, it's worked a bit re platelets, 700 tho rising again....

Joetcalr

•2 years ago

26 Replies

Pegasys and Pericarditis?

I’d like to ask if anyone else taking Pegasys has had issues with pericarditis/myocarditis? I have now had 5 Emergency Department admissions since 2019....

I’d like to ask if anyone else taking Pegasys has had issues with pericarditis/m...

MPNBlog

•2 years ago

20 Replies

Update on “20 years old and Scared”

Hey guys, roughly 11 months ago I posted in this group worried to death about my unspecified polycythemia diagnosis. You guys provided me with so much support...

Hey guys, roughly 11 months ago I posted in this group worried to death about my...

Lc06091

•2 years ago

4 Replies

Traveling with Pegasys on airplane.

Any suggestions on traveling with Pegasys prefilled syringe? I know it needs to be stored at 36-46 degrees Fahrenheit.

Any suggestions on traveling with Pegasys prefilled syringe? I know it needs to...

JeanieRN

•2 years ago

10 Replies

Any eye problems?

Hi My husband who has PV has had sore, itchy eyes for a couple of weeks, with painful spots appearing on the edges of his eye lids. He went to the GP 2 weeks...

Hi My husband who has PV has had sore, itchy eyes for a couple of weeks, with pa...

MarybellM

•2 years ago

17 Replies

Tiny platelet drop.

Platelet drop was a meagre 40, it may be time to admit after a year interferon is not helping me. Speaking to Dr today she dismissed Night sweats as an ET...

Platelet drop was a meagre 40, it may be time to admit after a year interferon ...

ciye

•2 years ago

3 Replies

Encouraging treatment pipeline for all blood cancers

https://www.prnewswire.com/news-releases/phrma-report-more-than-500-medicines-in-development-to-treat-disorders-of-the-blood-301549730.html

https://www.prnewswire.com/news-releases/phrma-report-more-than-500-medicines-in...

Paul123456

•2 years ago

9 Replies

Morning medication

Hi all, Just wondered if anyone could give me a bit of advice here. I have been on Hydroxy & Asprin for 4 months now and my platelets seem to be doing well,...

Hi all, Just wondered if anyone could give me a bit of advice here. I have been...

Yoganana1

•2 years ago

30 Replies

Very bad headache when I wake up!

Hi all I have ET Jak2+ at 8% platelets 415 diagnosed 2020 and have been taking Hydrea plus aspirin daily. Recently due to side effects of Hydrea my...

Hi all I have ET Jak2+ at 8% platelets 415 diagnosed 2020 and have been taking ...

Fairbank

•2 years ago

17 Replies

Mediterranean diet

Being a bit lazy here but can anyone point me in the right direction for resources for a Mediterranean, anti inflammatory diet? I've googled but I'm a bit...

Being a bit lazy here but can anyone point me in the right direction for resourc...

hansyhand

•2 years ago

23 Replies

Ps . Re appointment

It was so good to be listened to and know I was talking to someone who knows what they are talking about .

It was so good to be listened to and know I was talking to someone who knows wh...

Mostew

•2 years ago

3 Replies

Phone Appointment with professor Harrison

I had appointment today. Was organised , sending her photo of my arm , blood test results and some thoughts I wanted to discuss. Waited from 11 till 12.45....

I had appointment today. Was organised , sending her photo of my arm , blood t...

Mostew

•2 years ago

27 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for May 2022

5th jab

Medication limit in Greece

Recent trip and Besremi effects

Hoilday turkey

Update: driving and bmb

Hopkins reschedule

Besremi

E.T. Serum Bilirubin Level

Pegasys jab

Windy city?

Jakafi

Covid booster

Received lateral flow tests that I didn't order

Peg affecting thyroid

Dreams

Covid anti viral drugs

Bone marrow biopsy and driving

Home Blood kits

Anemia on pegasys ET

Pegasys and Pericarditis?

Update on “20 years old and Scared”

Traveling with Pegasys on airplane.

Any eye problems?

Tiny platelet drop.

Encouraging treatment pipeline for all blood cancers

Morning medication

Very bad headache when I wake up!

Mediterranean diet

Ps . Re appointment

Phone Appointment with professor Harrison

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