Posts - MPN Voice | HealthUnlocked

MPN Voice

10,443 members • 14,396 posts

All posts for April 2022

An Anti-Inflammatory Lifestyle - Institute for Brain Potential Interactive Webinar

For those interested in learning more about an Anti-Inflammatory lifestyle. Geared for professionals but I have found the IBP presentations to be very...

For those interested in learning more about an Anti-Inflammatory lifestyle. Gea...

hunter5582

•2 years ago

6 Replies

Good news for coffee lovers !

Is coffee bad for your gut bacteria? If you like to support your gut health but love a cup or two of the brown stuff, this is a question you may have pondered...

Is coffee bad for your gut bacteria? If you like to support your gut health but...

Mostew

•2 years ago

26 Replies

Kidney Disease Nd ET +Jak2

I recently visited an MPN Specialist who recommended staying on Hydroxyurea to treat my high platelets. In reading all the blood work test results , I see...

I recently visited an MPN Specialist who recommended staying on Hydroxyurea to t...

Auggie17

•2 years ago

3 Replies

Want to take advantage of all our features? Just log in!

Need advice on telling hem I need second opinion

I am female, 76, finished 6 weeks phlebotomy on 1,000 mg hydroxy and one 81 mg aspirin, dx PV, platelets 1 million right now. I have an appt at Mass Gen...

I am female, 76, finished 6 weeks phlebotomy on 1,000 mg hydroxy and one 81 mg a...

BrookTownsend375

•2 years ago

5 Replies

Hand Pain

Hi. I have primary myelofibrosis. I am getting pains in my knuckles and shooting pains in some fingers and along the side of my hand pretty well every day. My...

Hi. I have primary myelofibrosis. I am getting pains in my knuckles and shooting...

Wildwood6

•2 years ago

10 Replies

Insurance denied Besremi

I just got the denial letter from my insurance that they will not cover Besremi. I will have to take their covered formulary drug, Pegasys, and I guess do...

I just got the denial letter from my insurance that they will not cover Besremi....

Wewo01

•2 years ago

8 Replies

Post-covid inflammation

I don't post often, but I have been regularly reading some of the posts for the last couple of years. I really appreciate all of the knowledge that everyone...

I don't post often, but I have been regularly reading some of the posts for the ...

blue_reader

•2 years ago

15 Replies

How many had BMB prior to diagnosis uk

I just wondered how many of you in the UK had a bmb prior to your diagnosis even if you had jak2 or calr etc positive on blood test. Do you definitely have to...

I just wondered how many of you in the UK had a bmb prior to your diagnosis even...

Notdiagnosed

•2 years ago

25 Replies

What genetic / genomic information does a BMB give that bloods don’t?

Hi. I’ve been dipping getting in and out of this friendly and helpful group since I discovered it I have PMF, diagnosed 5 years ago and am having a hard...

Hi. I’ve been dipping getting in and out of this friendly and helpful group sinc...

Rachelthepotter

•2 years ago

7 Replies

Diagnosed with Shingles MDS/MPN Overlap Syndrome

Just been diagnosed with Shingles confined to my scalp at the moment. I've been prescribed Aciclovir 800mg 5 times a day. I have very low...

Just been diagnosed with Shingles confined to my scalp at the moment. I've been...

Tartanlady

•2 years ago

7 Replies

Besremi

I see a lot of references to Besremi. Is Besremi also an interferon medication? In Australia we only have access to hydroxyurea or Pegasys.

I see a lot of references to Besremi. Is Besremi also an interferon medication? ...

Phantasia

•2 years ago

24 Replies

Covid question -

Diagnosed PV jak2+; take aspirin, BP meds, thyroid meds and hydroxycarbamide . I tested positive for Covid last night so far not too bad. Phoned NHS...

Diagnosed PV jak2+; take aspirin, BP meds, thyroid meds and hydroxycarbamide . I...

2261

•2 years ago

11 Replies

Aspirin and diverticulitis

Hello, I hope you are all doing well! My 16 year old daughter was diagnosed with ET, JAK2+ last year and I have been doing a lot of reading. I rejected the...

Hello, I hope you are all doing well! My 16 year old daughter was diagnosed wit...

Piperpeeps

•2 years ago

2 Replies

ET and having a baby

Hi everyone , I’m new, I just got diagnosed ET after over 1 year symptoms and high platelets what my gp what continuously ignoring. I’m still waiting to doing...

Hi everyone , I’m new, I just got diagnosed ET after over 1 year symptoms and hi...

Inverter

•2 years ago

5 Replies

ET thrombosis risk rating, PLT level is no longer primary issue

In this thread I made summaries of some of the videos that Hunter kindly provided. A top stand out item seems worth its own discussion. Raajit Rampal showed...

In this thread I made summaries of some of the videos that Hunter kindly provide...

EPguy

•2 years ago

17 Replies

Latest CBC, CMP and Besremi shot

I had my 5th shot last week. It was at 100mcg, next will be at 150. I had a very bad day yesterday. It felt like an Omicron infection (runny nose,...

I had my 5th shot last week. It was at 100mcg, next will be at 150. I had a ve...

EPguy

•2 years ago

30 Replies

Suggestions to help manage fatigue

Hi everyone, I've not posted much before but after an appointment with my consultant today I'm feeling rather deflated and a wee bit lost. I was diagnosed...

Hi everyone, I've not posted much before but after an appointment with my consu...

Bea_W

•2 years ago

32 Replies

MPN Advocacy & Education international - Patient & Caregivers Conference April 15, 2022

For those who could not attend, here are the links to the presentations. Topic: The 4 W's of Enrolling in a Clinical Trial, Laura Michaelis, MD...

For those who could not attend, here are the links to the presentations. Topi...

hunter5582

•2 years ago

17 Replies

MPN / CALR treatment

Was doing some mpn reading (my new hobby haha) and came across this potentially new treatment for those of us who have CALR mutations. I thought this was...

Was doing some mpn reading (my new hobby haha) and came across this potentially ...

dbus1417

•2 years ago

5 Replies

Experience with Pegasys or Besremi with Hypothyroidism, vitiligo, Alopecia.

Hi, Do any of you have autoimmune diseases and take Pegasys or Besremi? If so, how have you done? Thank you! Jeanie

Hi, Do any of you have autoimmune diseases and take Pegasys or Besremi? If so, ...

JeanieRN

•2 years ago

2 Replies

Cbd oil 10 usa

Does anyone know a good organic cbd oil. Thought it might be cheaper . My daughter is coming over soon so I can ask her to bring some . I get CBD VITAL 10 ....

Does anyone know a good organic cbd oil. Thought it might be cheaper . My daug...

Mostew

•2 years ago

5 Replies

Switch from HU to Pegasys - update 4.0

Sat here with a celebratory Twirl and cuppa following a call from my haem: 15 weeks into Peg and stopped HU 7+ weeks ago. Platelets: 347 (337 in Feb) Hct:...

Sat here with a celebratory Twirl and cuppa following a call from my haem: 15 we...

FG251

•2 years ago

30 Replies

Not sure what to do

I saw an MPN consultant at Guy's on 15 March 2022, so five weeks ago today. She said I would have a further telephone consultation in 6-7 weeks, but I have...

I saw an MPN consultant at Guy's on 15 March 2022, so five weeks ago today. She...

Hidden

•2 years ago

17 Replies

Diagnosis update

So I had a call with Locum Haematologist today. She has asked Dr Mark Drummond for advice on my case as “i am unusual”. Requested CALR & MPL tests also. Put me...

So I had a call with Locum Haematologist today. She has asked Dr Mark Drummond f...

LittleLuna

•2 years ago

15 Replies

Vit D and platelets

Just read an interesting item regarding vit D deficiency and platelet count. I was actually trying to research whether it could make any sufficient difference...

Just read an interesting item regarding vit D deficiency and platelet count. I w...

jodary

•2 years ago

18 Replies

Besremi doing well

« Sales of the drug are better than expected »

Manouche

•2 years ago

8 Replies

To antivirals or not to antivirals

ET with CALR, on warfarin and 45mcg Pegasys every 4 weeks. 3 vaccines, last one in November. Just when I started hoping I was going to remain one of the...

ET with CALR, on warfarin and 45mcg Pegasys every 4 weeks. 3 vaccines, last one ...

flamboyant_hawking

•2 years ago

6 Replies

Part 2, DALIAH INF-HU trial new data analysis

I went thru it in detail. It doesn't qualify by my def as easy and fully coherent but plenty of info. Here are my notes:...

I went thru it in detail. It doesn't qualify by my def as easy and fully cohere...

EPguy

•2 years ago

1 Reply

Covid and Blood Groups

The attached link below is interesting. It suggests that blood groups play an instrumental role in whether people develop a severe form of Covid disease. In...

The attached link below is interesting. It suggests that blood groups play an i...

mhos61

•2 years ago

6 Replies

COVID (finally) Caught Me

After avoiding it for 2 years (despite significant international travel) - COVID finally caught up with me and I tested positive a week ago. Started feeling a...

After avoiding it for 2 years (despite significant international travel) - COVID...

Solyesh

•2 years ago

22 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for April 2022

An Anti-Inflammatory Lifestyle - Institute for Brain Potential Interactive Webinar

Good news for coffee lovers !

Kidney Disease Nd ET +Jak2

Need advice on telling hem I need second opinion

Hand Pain

Insurance denied Besremi

Post-covid inflammation

How many had BMB prior to diagnosis uk

What genetic / genomic information does a BMB give that bloods don’t?

Diagnosed with Shingles MDS/MPN Overlap Syndrome

Besremi

Covid question -

Aspirin and diverticulitis

ET and having a baby

ET thrombosis risk rating, PLT level is no longer primary issue

Latest CBC, CMP and Besremi shot

Suggestions to help manage fatigue

MPN Advocacy & Education international - Patient & Caregivers Conference April 15, 2022

MPN / CALR treatment

Experience with Pegasys or Besremi with Hypothyroidism, vitiligo, Alopecia.

Cbd oil 10 usa

Switch from HU to Pegasys - update 4.0

Not sure what to do

Diagnosis update

Vit D and platelets

Besremi doing well

To antivirals or not to antivirals

Part 2, DALIAH INF-HU trial new data analysis

Covid and Blood Groups

COVID (finally) Caught Me

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