Posts - MPN Voice | HealthUnlocked

MPN Voice

10,445 members • 14,397 posts

All posts for April 2022

Besremi vs Hydroxyurea

Attached is a presentation for patients regarding Besremi, in part comparing it to HU. It starts at minute 14:46 of the webinar and is by PharmaEssentia....

Attached is a presentation for patients regarding Besremi, in part comparing it ...

pepper-

•2 years ago

39 Replies

HRT

Hi can anyone give me any advice please , I’m waitng to start HRT because I’m going through horrendous peri menopause symptoms but need to speak to my...

Hi can anyone give me any advice please , I’m waitng to start HRT because I’m go...

Lizzy19

•2 years ago

9 Replies

Peripheral Neuropathy

I have recently developed peripheral neuropathy from hydroxyurea and have now discontinued the medication. Has anyone else had this happen and how long did PN...

I have recently developed peripheral neuropathy from hydroxyurea and have now di...

Phantasia

•2 years ago

30 Replies

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Hydroxyruea

Hello all, Like to see if anyone out there can help me with a question. My Hemo is talking about starting me on Hydroxyruea . I do believe he is on the right...

Hello all, Like to see if anyone out there can help me with a question. My Hemo ...

josup26

•2 years ago

17 Replies

What over the counter Curcumin would you suggest?

So I am currently on Pegasys would Curcumin interfer with this? What over the counter Curcumin would you suggest?

So I am currently on Pegasys would Curcumin interfer with this? What over the c...

Christyjo1965

•2 years ago

4 Replies

PEGASYS and live vaccines

Hi everyone, hope you are all getting back into a more normal life. I have started travelling again and because of this I need to have a Yellow Fever vaccine,...

Hi everyone, hope you are all getting back into a more normal life. I have start...

Quercus53

•2 years ago

2 Replies

Flying and Health

Hi Everyone, I was looking for some advice on flying & health if possible. I have been on Hydroxy & Asprin now for 3 months and last bloods were looking...

Hi Everyone, I was looking for some advice on flying & health if possible. I ha...

Yoganana1

•2 years ago

30 Replies

Curcumin New Promising MPN Study

Heads up , this post is dense, long, and detailed. -- There is a great thread going, initially about NAC supplement. It veered to Curcumin with Hunter's...

Heads up , this post is dense, long, and detailed. -- There is a great thread g...

EPguy

•2 years ago

48 Replies

Hypothyroidism from Hydrea

I'm curious if anyone has developed hypothyroidism since starting treatment with hydroxycarbamide. I'm about to have a blood test to check this, but I have...

I'm curious if anyone has developed hypothyroidism since starting treatment with...

Hidden

•2 years ago

19 Replies

Rising Platelets; Feeling wiped out

Hi Everyone, This is my first post, I've been looking for forums to discuss what could be going on with me. To start , I guess this isn't related but my dad...

Hi Everyone, This is my first post, I've been looking for forums to discuss what...

Cesw1975

•2 years ago

11 Replies

Covid 19 and anti viral meds

Tested positive for covid Sunday. Bit like flu. I’ve had four jabs. Was due fifth at end of April. Just been for anti viral infusion that was offered as soon...

Tested positive for covid Sunday. Bit like flu. I’ve had four jabs. Was due fif...

HazeBlue

•2 years ago

14 Replies

P V diagnosed January 2022

Hi all Update positive for Jax 2 first blood test platelets over a 1000 and red and white blood cells raised . So started me on Hydroxycarbamide 500mg per...

Hi all Update positive for Jax 2 first blood test platelets over a 1000 and red...

Mandz12

•2 years ago

23 Replies

Booster post covid

Morning everyone. I have just had my telephone consultation with my Haemo Nurse and thankfully all good. I am ET Jak 2 and on Hydroxy. I am recovering from...

Morning everyone. I have just had my telephone consultation with my Haemo Nurse...

Oscarsboy

•2 years ago

4 Replies

Gum Hyperplasia/Bleeding

I have ET, and I’ve been having trouble with my gums for some time. They bleed a lot, on my latest trip to the dentist he said the hyperplasia (gum overgrowth)...

I have ET, and I’ve been having trouble with my gums for some time. They bleed a...

lizzziep

•2 years ago

11 Replies

1st dose Pegasus done

Well , I finally had my 1st dose 45ug peg lunchtime today. Not felt anything as yet and injecting was surprisingly easy. So will see what happens. I have MPL...

Well , I finally had my 1st dose 45ug peg lunchtime today. Not felt anything as ...

Sprat19

•2 years ago

21 Replies

Itching

I posted earlier asking if Pegasus caused worse itching than ropegintron. Does it? I have had MF since 2003.

I posted earlier asking if Pegasus caused worse itching than ropegintron. Does i...

Sophiedog9

•2 years ago

2 Replies

NAC supp continued

I've been taking it (N-acetyl cysteine) with Dr approval. I tried two short tests last Dec and it seemed to help. My latest test has been going for ~ 2...

I've been taking it (N-acetyl cysteine) with Dr approval. I tried two short tes...

EPguy

•2 years ago

33 Replies

Besremi progress

I started a month ago. My fourth dose was last Wed. 1st three were at 50mcg, last one I did 70 as a compromise as I awaited Dr instructions. Next will be...

I started a month ago. My fourth dose was last Wed. 1st three were at 50mcg, l...

EPguy

•2 years ago

26 Replies

Feeling so tired and fed up

Hello all you lovely people, I have not been on here for a while so just a wee update on what's happening in my life with MF: really not much change still on...

Hello all you lovely people, I have not been on here for a while so just a wee ...

indy22

•2 years ago

16 Replies

Cancer Immune Therapy for MPN

There is a post from Manouche about an actual trial related to the subject here....

EPguy

•2 years ago

8 Replies

9 weeks on Besremi: Update

I'm currently on a 1 month holding pattern of 100 mcg. I got new bloodwork yesterday. WBC is down to 7 from a high of 15, PLT are 466, the lowest they have...

I'm currently on a 1 month holding pattern of 100 mcg. I got new bloodwork yest...

Elizka

•2 years ago

23 Replies

Accessing Antivirals

So....after two years of being super-careful, we have become a plague household and all caught Covid. I thought I'd share my experience of testing and...

So....after two years of being super-careful, we have become a plague household ...

DENICE66

•2 years ago

22 Replies

Raised mcv

Morning all. I have pv and taking hydroxycarbomide and apixaban. I've been struggling with breathlessness for some time now but haematologist says it's not...

Morning all. I have pv and taking hydroxycarbomide and apixaban. I've been stru...

poly2

•2 years ago

46 Replies

2nd Booster

I notice that many of you seem to be getting notification re your 2nd booster so are obviously on some list. I had my booster on 5 January so should be due my...

I notice that many of you seem to be getting notification re your 2nd booster so...

Fionnuaghla

•2 years ago

8 Replies

Vaccine update

Covid vaccine update. For a recap. Pfizer First vaccine I was fine with. Second I had a trip to A&E with heart pain. heart rate remained high for 4 months....

Covid vaccine update. For a recap. Pfizer First vaccine I was fine with. Second...

EleanorPV

•2 years ago

6 Replies

Baby it’s cold outside

At the risk of sounding like one of Terry Wogan’s listeners ‘Is it just me?!’ But I can’t take the cold anymore I’m on Hydroxycarbamide (500mg weekdays and...

At the risk of sounding like one of Terry Wogan’s listeners ‘Is it just me?!’ Bu...

Plavers

•2 years ago

18 Replies

Spring Booster 3 or 6 months?

Hi team, So I got a letter inviting me for a spring booster which was nice. When you go to book it you get this info below, You may be offered appointment...

Hi team, So I got a letter inviting me for a spring booster which was nice. When...

Jonnymitts

•2 years ago

22 Replies

Amended Instructions from NHS

Strangely, after Andy T’s post yesterday, I received an Email last night from NHS with updated instructions which answer my question about whether PCR tests...

Strangely, after Andy T’s post yesterday, I received an Email last night from NH...

azaelea

•2 years ago

15 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for April 2022

Besremi vs Hydroxyurea

HRT

Peripheral Neuropathy

Hydroxyruea

What over the counter Curcumin would you suggest?

PEGASYS and live vaccines

Flying and Health

Curcumin New Promising MPN Study

Hypothyroidism from Hydrea

Rising Platelets; Feeling wiped out

Covid 19 and anti viral meds

P V diagnosed January 2022

Booster post covid

Gum Hyperplasia/Bleeding

1st dose Pegasus done

Itching

NAC supp continued

Besremi progress

Feeling so tired and fed up

Cancer Immune Therapy for MPN

9 weeks on Besremi: Update

Accessing Antivirals

Raised mcv

2nd Booster

Vaccine update

Baby it’s cold outside

Spring Booster 3 or 6 months?

Amended Instructions from NHS

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