Posts - MPN Voice | HealthUnlocked

MPN Voice

10,525 members • 14,543 posts

All posts for May 2024

BMB Results

Would like to get others thoughts. Looks like I caught it early. Images below because the site is weird Edited: I misread my first PCR test I have jak2...

Would like to get others thoughts. Looks like I caught it early. Images below ...

gdpone

•23 hours ago

8 Replies

MF and anemia

Recently diagnosed, 56 years old on my 3rd month of Ruxolitinib, now have anemia and been put on ferrous fumerate. Consultant didnt want to put me on them,...

Recently diagnosed, 56 years old on my 3rd month of Ruxolitinib, now have anemia...

Lallybroch1

•1 day ago

9 Replies

Redeye

Hi redeye I have been on Hu for many years due to the fact I had a CT scan and it showed up that I had blood clots to the liver and my consultant gave me the...

Hi redeye I have been on Hu for many years due to the fact I had a CT scan and i...

Scottishterrier

•1 day ago

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A bit of advice please.

Hello Everyone I have ET JAK2 and currently taking Hydroxycarbamide. I have be reading about ruxolitinib and wondered if anyone out there takes this...

Hello Everyone I have ET JAK2 and currently taking Hydroxycarbamide. I have b...

YBSx

•2 days ago

3 Replies

Update 8.2

Good news on the labs today. Since the phlebotomy on March 26 my HCT is staying below target. It actually dropped some more this time to 41.4%. LYMPH and...

Good news on the labs today. Since the phlebotomy on March 26 my HCT is staying...

hunter5582

•2 days ago

27 Replies

Cytoreductive therapy in younger adults with polycythemia vera: a meta-analysis of safety and outcomes

»To our knowledge, this is the first systematic review and meta-analysis evaluating the available evidence regarding the safety of cytoreductive agents in...

»To our knowledge, this is the first systematic review and meta-analysis evalua...

Manouche

•2 days ago

9 Replies

Transitioning from HU to Ruxolitinib

I am hoping that people here can give me the benefit of their experience of switching from hydroxycarbamide to ruxolitinib. I had a consultation today with...

I am hoping that people here can give me the benefit of their experience of swit...

friendofpiglet

•2 days ago

15 Replies

Pegasus and Low Neutrophils

I stated taking 45mg of Pegy weekly in January. My Neutrophils were seen to be dropping in March and by late April were below 1 so I was switched to bi-weekly...

I stated taking 45mg of Pegy weekly in January. My Neutrophils were seen to be d...

DougyW

•2 days ago

7 Replies

My Voice App

I listened to the Webinar and would like a link to enable me to sign up for the App discussed. Thank you R. A.

I listened to the Webinar and would like a link to enable me to sign up for the ...

Leonardo

•2 days ago

1 Reply

Worries about Travel Medical Insurance

Hi, I am recently diagnosed with ET and started yesterday on Hydroxycarbamide 500mg Monday to Friday . I understand that I will be monitored closely to...

Hi, I am recently diagnosed with ET and started yesterday on Hydroxycarbamide 5...

SpendyWendy

•2 days ago

10 Replies

Choices.

My name is Tania - I was diagnosed with myelofibrosis 8 1/2 years ago at the age of 50. I have been on ruxolitinib for the last 3 1/2 years and am now in a...

My name is Tania - I was diagnosed with myelofibrosis 8 1/2 years ago at the age...

Petsgalore

•3 days ago

8 Replies

Sjorgren syndrome

Following months of repeated eye infections, I have now been diagnosed with dry eyes, and drops certainly seem to be helping. However I came across an article...

Following months of repeated eye infections, I have now been diagnosed with dry ...

Pippapot

•3 days ago

13 Replies

Hydroxicarbamide for PV - UK

Diagnosed late 2018 soon after started on Hydroxycarbamide + Rivaroxyban 10mg daily. In the last year, Hydroxycarbamide has been increased slowly every few...

Diagnosed late 2018 soon after started on Hydroxycarbamide + Rivaroxyban 10mg da...

RedEye21

•3 days ago

14 Replies

MPN Voice App for monitoring symptoms

I have recently started to use the app,! I have to say how easy it is to use. Recording symptoms is so quick and handy and I even added my own. I added all my...

I have recently started to use the app,! I have to say how easy it is to use. Re...

gset

•3 days ago

21 Replies

Traveling with Besremi or Pegasys

Hi, If you are currently taking Besremi or Pegasys and planning a vacation during the summer you may have concerns about traveling and keeping your medicine...

Hi, If you are currently taking Besremi or Pegasys and planning a vacation duri...

JohnSC

•3 days ago

5 Replies

Free Lateral Flow Tests

Can anyone inform me if MPN patient on medication can still obtain free lateral flow tests from a pharmacy. I went to get some more today and was told the...

Can anyone inform me if MPN patient on medication can still obtain free lateral ...

swimswam

•3 days ago

9 Replies

Does Besremi cause high blood sugar?

I started Besremi two weeks ago. My first dose was 100 mcg. I am supposed to take my second dose today, and increase it to 150mcg. The thing is, I had a BMB...

I started Besremi two weeks ago. My first dose was 100 mcg. I am supposed to tak...

Panda2014

•3 days ago

25 Replies

Recent allergy to penicillin - any connection to ET or Hydroxy?

I have ET and started Hydroxy 500 mg in February 2024. I recently had to take 2 antibiotics. One was Doxycycline for a stomach infection which I tolerated...

I have ET and started Hydroxy 500 mg in February 2024. I recently had to take 2...

Zoebowie

•3 days ago

7 Replies

Weight loss in PV?

I'd like to know if anyone else with PV has been experiencing weight loss. I was diagnosed back in 2015 and treated, first with phlebotomies, then with HU, and...

I'd like to know if anyone else with PV has been experiencing weight loss. I was...

sbs_patient

•4 days ago

8 Replies

Today's update

Some potentially good news. Saw my PCP this morning and he went over all my labs. Counts for RBC are slightly high but he's not concerned as with PV counts...

Some potentially good news. Saw my PCP this morning and he went over all my labs...

HockeyFan47

•4 days ago

6 Replies

Momelotinib

Good to hear that Momelotinib has worked for some on this site. In my case it pushed platelets up to c1900 from 1250, and WBC to c16 from 13. Gave it up on MPN...

Good to hear that Momelotinib has worked for some on this site. In my case it pu...

ExistentialNihilist

•4 days ago

10 Replies

possibly nail melanoma and UTI infections.

Dear all, I have been having a UTI since 11 May. I was a day on intravenous antibiotics followed by 7 days oral antibiotics. Within two days of stopping the...

Dear all, I have been having a UTI since 11 May. I was a day on intravenous ant...

artydutch

•5 days ago

8 Replies

Leg pain

I noticed someone else mention pain in their legs. When I had et and mf I would have intermittent pain in my outside thighs. I was never sure if it was the mpn...

I noticed someone else mention pain in their legs. When I had et and mf I would ...

Scaredy_cat

•5 days ago

4 Replies

Sorry it has been a while with an update on Ruxolitinib

The last time I wrote to you all was about 2/3 years ago when I started Ruxolitinib. The first 6 to 8 months I was a different person, I felt great. I started...

The last time I wrote to you all was about 2/3 years ago when I started Ruxoliti...

wendycu

•5 days ago

15 Replies

Ruxolitinib - declining efficacy?

Hi everyone I’ve had PV for 12 years or so and have been on Ruxolitinib for the past 7 years with great success. My platelets dropped to around 450 and my...

Hi everyone I’ve had PV for 12 years or so and have been on Ruxolitinib for the...

Rob58

•5 days ago

12 Replies

Possible side effect?

I started Pegasys just about 2.5 months ago. Dose 45 mcg. per week. No real side effects. Then just increased to 60 mcg. per week. Injected on Friday, and...

I started Pegasys just about 2.5 months ago. Dose 45 mcg. per week. No real side...

dogsandhorses

•6 days ago

18 Replies

ET / Osteonecrosis / Surgery

Hello Has anyone else with ET experienced problems with insufficient blood circulation causing osteonecrosis? If surgery is inevitable, what extra cautionary...

Hello Has anyone else with ET experienced problems with insufficient blood circ...

Bodensee

•6 days ago

8 Replies

inconclusive results for PV

𝗜𝗻𝗰𝗼𝗻𝗰𝗹𝘂𝘀𝗶𝘃𝗲 𝗳𝗶𝗻𝗱𝗶𝗻𝗴𝘀 The bone marrow biopsy results indicate an expanded erythropoiesis and relatively reduced myelopoiesis. There are no...

𝗜𝗻𝗰𝗼𝗻𝗰𝗹𝘂𝘀𝗶𝘃𝗲 𝗳𝗶𝗻𝗱𝗶𝗻𝗴𝘀 The bone marrow biopsy results indica...

Lababba

•7 days ago

3 Replies

below range RBC

I’ve read tha beliwvrange RBC can cau muscle pain and spasm. Mine are always low and I hit lots of muscle pain and get soasms in my trapezes. “Larger muscles...

I’ve read tha beliwvrange RBC can cau muscle pain and spasm. Mine are always lo...

130396

•7 days ago

12 Replies

Essential thrombocythemia with non-canonical MPL mutations (e.g., MPL R102P or R102C or R102L, etc.)

Hi! I wanted to see if there are other people out there who have been diagnosed with essential thrombocythemia with non-canonical MPL mutation. Mine is MPL...

Hi! I wanted to see if there are other people out there who have been diagnosed ...

TTA_

•7 days ago

9 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for May 2024

BMB Results

MF and anemia

Redeye

A bit of advice please.

Update 8.2

Cytoreductive therapy in younger adults with polycythemia vera: a meta-analysis of safety and outcomes

Transitioning from HU to Ruxolitinib

Pegasus and Low Neutrophils

My Voice App

Worries about Travel Medical Insurance

Choices.

Sjorgren syndrome

Hydroxicarbamide for PV - UK

MPN Voice App for monitoring symptoms

Traveling with Besremi or Pegasys

Free Lateral Flow Tests

Does Besremi cause high blood sugar?

Recent allergy to penicillin - any connection to ET or Hydroxy?

Weight loss in PV?

Today's update

Momelotinib

possibly nail melanoma and UTI infections.

Leg pain

Sorry it has been a while with an update on Ruxolitinib

Ruxolitinib - declining efficacy?

Possible side effect?

ET / Osteonecrosis / Surgery

inconclusive results for PV

below range RBC

Essential thrombocythemia with non-canonical MPL mutations (e.g., MPL R102P or R102C or R102L, etc.)

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