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Polycythaemia
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Frustrated
As it stands, the consultants i have seen all say that i have secondary
Polycythaemia
. I've had 20+ venesections since November 2019. I have blood tests every 8 weeks, then a review a week after the blood test. My liver, kidney's and other organs are in good shape.
As it stands, the consultants i have seen all say that i have secondary
Polycythaemia
. I've had 20+ venesections since November 2019. I have blood tests every 8 weeks, then a review a week after the blood test. My liver, kidney's and other organs are in good shape.
Loose_ends
in
MPN Voice
2 years ago
Newbie with PV and questions!
I'm 50 and was told I have
Polycythaemia
Vera last week. Probably like many of you on here, I ended up getting diagnosed with PV as a coincidence. I complained at my GP about persistent and worsening hip pain when walking.
I'm 50 and was told I have
Polycythaemia
Vera last week. Probably like many of you on here, I ended up getting diagnosed with PV as a coincidence. I complained at my GP about persistent and worsening hip pain when walking.
ExtraFox
in
MPN Voice
2 years ago
Too Low TSH? and does it cause high prolactin in a man
TSH 0.01 Range0.27-4.2 mU/L Free T4 17.2 Range 12-22 pmol/L Free T3 4.51 Range 3.1-6.8 pmol/L Prolactin 470 Range 86-324 mU/L Ferritin 105 Vit D 175 B12 889 Range 145-569 pmol/L this reads false high because I have
Polycythaemia
TSH 0.01 Range0.27-4.2 mU/L Free T4 17.2 Range 12-22 pmol/L Free T3 4.51 Range 3.1-6.8 pmol/L Prolactin 470 Range 86-324 mU/L Ferritin 105 Vit D 175 B12 889 Range 145-569 pmol/L this reads false high because I have
Polycythaemia
ainslie
in
Thyroid UK
2 years ago
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Video of the MPN Voice patients’ in-person forum Cork, Sat 21 May 2022
The programme: •Welcome and introduction to MPN Voice, who we are and what we do: Nona Baker, co-chair MPN Voice •Overview and history of MPNs and an overview of ET: Dr Eibhlin Conneally, Consultant Haematologist, St James’ Hospital, Dublin •
Polycythaemia
Vera an overview: Dr Clodagh Keohane, Consultant
The programme: •Welcome and introduction to MPN Voice, who we are and what we do: Nona Baker, co-chair MPN Voice •Overview and history of MPNs and an overview of ET: Dr Eibhlin Conneally, Consultant Haematologist, St James’ Hospital, Dublin •
Polycythaemia
Vera an overview: Dr Clodagh Keohane, Consultant
Mazcd
MPNVoice
in
MPN Voice
2 years ago
Blood result question
No idea what numbers mean but understand they are still querying PV and Primary or Secondary
Polycythaemia
. Sept 21 I had haemoglobin of 167g/1 & 48.5% haematocrit. Jan 2022 haemaogloblin of 164g/1 & 45.9% haematrocrit Are these numbers high? Is it good there is a little reduction?
No idea what numbers mean but understand they are still querying PV and Primary or Secondary
Polycythaemia
. Sept 21 I had haemoglobin of 167g/1 & 48.5% haematocrit. Jan 2022 haemaogloblin of 164g/1 & 45.9% haematrocrit Are these numbers high? Is it good there is a little reduction?
LittleLuna
in
MPN Voice
2 years ago
Painkillers while on Hydroxycarbamide for treatment of Polycythaemia Vera
Has anyone with PV and taking Hydroxycarbamide been advised not to take Ibroprfen or any similar painkillers ending in fen?
Has anyone with PV and taking Hydroxycarbamide been advised not to take Ibroprfen or any similar painkillers ending in fen?
Edinburgh1953
in
MPN Voice
2 years ago
Polycythaemia Vera.
I live in Plymouth UK, and have just been diagnosed with Polycycthaemia Vera , and am waiting to hear from my hospital my treatment which I believe will be phlebotomy ie bloods taken to reduce my red blood cell count. I had a liver transplant 12 years ago and have enjoyed good health till now :(. Only
I live in Plymouth UK, and have just been diagnosed with Polycycthaemia Vera , and am waiting to hear from my hospital my treatment which I believe will be phlebotomy ie bloods taken to reduce my red blood cell count. I had a liver transplant 12 years ago and have enjoyed good health till now :(. Only
plym1uk
in
MPN Voice
3 years ago
Confused about 4th Covid vaccination
There are other conditions I’m being investigated for including
Polycythaemia
Vera and Adrenal insufficiency....I don’t know what has triggered the letters. My query is that the letter seems to imply that I need to take a referral letter from my 3rd primary dose or a letter from my doctor.
There are other conditions I’m being investigated for including
Polycythaemia
Vera and Adrenal insufficiency....I don’t know what has triggered the letters. My query is that the letter seems to imply that I need to take a referral letter from my 3rd primary dose or a letter from my doctor.
Skodadet
in
PMRGCAuk
3 years ago
Proving Polycythaemia Vera (PV) with/without WHO2016 criteria
I’m seeking any guidance on
Polycythaemia
Vera (PV) and the application of WHO2016 criteria in its prognosis or lack thereof.
I’m seeking any guidance on
Polycythaemia
Vera (PV) and the application of WHO2016 criteria in its prognosis or lack thereof.
Tropicaldays
in
MPN Voice
3 years ago
Advice please
A few months ago I was diagnosed with hypothyroidism (as well as a relatively minor case of a blood disorder called
polycythaemia
which affects my circulation and joints, which in turn exacerbates the thyroid symptoms) but my doctor said he wanted me to take a course of vitamin D for six weeks before
A few months ago I was diagnosed with hypothyroidism (as well as a relatively minor case of a blood disorder called
polycythaemia
which affects my circulation and joints, which in turn exacerbates the thyroid symptoms) but my doctor said he wanted me to take a course of vitamin D for six weeks before
rustymoon88
in
Thyroid UK
3 years ago
FDA Approves Ropeginterferon Alfa-2b-njft for Polycythemia Vera
Ropeginterferon alfa-2b versus standard therapy for
polycythaemia
vera (PROUD-PV and CONTINUATION-PV): a randomised, non-inferiority, phase 3 trial and its extension study.
Ropeginterferon alfa-2b versus standard therapy for
polycythaemia
vera (PROUD-PV and CONTINUATION-PV): a randomised, non-inferiority, phase 3 trial and its extension study.
JT_Marlin
in
MPN Voice
3 years ago
TOWARDS A POTENTIAL OPERATIONAL CURE IN PATIENTS WITH POLYCYTHAEMIA VERA?
Conclusion A sizable proportion of patients with PV achieved operational cure after 5 years’ ropeginterferon alfa-2b treatment. Lower age and lower allele burden at baseline predicted allele burden <10% at 5 years, suggesting that ropeginterferon alfa-2b should be initiated early in PV to achieve the
Conclusion A sizable proportion of patients with PV achieved operational cure after 5 years’ ropeginterferon alfa-2b treatment. Lower age and lower allele burden at baseline predicted allele burden <10% at 5 years, suggesting that ropeginterferon alfa-2b should be initiated early in PV to achieve the
Manouche
in
MPN Voice
3 years ago
Polycythaemia ruby vera & covid vaccine
Hi I have
Polycythaemia
rubra Vera just on aspirin at the moment platelets around 1000 all the time. I have been told that I am class 6 for the vaccine so will be one of the last to have it can anyone tell me if this is correct . Oh I am 45 years old. Reply (0)
Hi I have
Polycythaemia
rubra Vera just on aspirin at the moment platelets around 1000 all the time. I have been told that I am class 6 for the vaccine so will be one of the last to have it can anyone tell me if this is correct . Oh I am 45 years old. Reply (0)
Jrc2019
in
MPN Voice
4 years ago
Pfizer Vaccine
My dad has
Polycythaemia
Vera too and had the Oxford Vaccine last week (he lives around the corner from me and went to the GP surgery). He did have headache/shivers but only for 24 hours.
My dad has
Polycythaemia
Vera too and had the Oxford Vaccine last week (he lives around the corner from me and went to the GP surgery). He did have headache/shivers but only for 24 hours.
SusiePlums
in
MPN Voice
4 years ago
Ropeginterferon alfa-2b versus phlebotomy in low-risk patients with polycythaemia vera (Low-PV study)
There is no evidence that phlebotomy alone is sufficient to steadily maintain haematocrit on target level in low-risk patients with
polycythaemia
vera. This study aimed to compare the efficacy and safety of ropeginterferon alfa-2b on top of the standard phlebotomy regimen with phlebotomy alone.
There is no evidence that phlebotomy alone is sufficient to steadily maintain haematocrit on target level in low-risk patients with
polycythaemia
vera. This study aimed to compare the efficacy and safety of ropeginterferon alfa-2b on top of the standard phlebotomy regimen with phlebotomy alone.
Manouche
in
MPN Voice
4 years ago
Is it time for interferon in low-risk patients with polycythaemia vera?
« The use of interferon for the treatment of myeloproliferative neoplasms has a long tradition. Pioneering studies were done by Silver and Gisslinger in the late 1980s. 1 , 2 They showed interferon alfa (then conventional interferon alfa) to be effective in controlling erythrocytosis, thrombocytosis
« The use of interferon for the treatment of myeloproliferative neoplasms has a long tradition. Pioneering studies were done by Silver and Gisslinger in the late 1980s. 1 , 2 They showed interferon alfa (then conventional interferon alfa) to be effective in controlling erythrocytosis, thrombocytosis
Manouche
in
MPN Voice
4 years ago
ICC ruled in favor of AOP Orphan Pharmaceuticals AG in arbitration proceedings pertaining to BESREMi®
«We are relieved that the ICC ruling compensates AOP Orphan now for the delay in getting BESREMi® approved in the European Union, and the delay in bringing this important medication to the patients suffering from
polycythaemia
vera, a rare and chronic disease of the blood building cells", explains Dr
«We are relieved that the ICC ruling compensates AOP Orphan now for the delay in getting BESREMi® approved in the European Union, and the delay in bringing this important medication to the patients suffering from
polycythaemia
vera, a rare and chronic disease of the blood building cells", explains Dr
Manouche
in
MPN Voice
4 years ago
ICC ruled in favor of AOP Orphan Pharmaceuticals AG in arbitration proceedings pertaining to BESREMi®
Consequently, AOP Orphan is entitled to payment of damages for project delays caused by PharmaEssentia, resulting in delays of the approval of the medicinal product for human use BESREMi® in Europe and delays in supply to patients affected by
polycythaemia
vera.
Consequently, AOP Orphan is entitled to payment of damages for project delays caused by PharmaEssentia, resulting in delays of the approval of the medicinal product for human use BESREMi® in Europe and delays in supply to patients affected by
polycythaemia
vera.
Manouche
in
MPN Voice
4 years ago
Itchy Skin problems
At the same time I had an alteration in medication dosage for
Polycythaemia
Vera that I have and which can have the side effect of itchy skin. I am asked by the consultant or registrar fairly regularly if this is occurring.
At the same time I had an alteration in medication dosage for
Polycythaemia
Vera that I have and which can have the side effect of itchy skin. I am asked by the consultant or registrar fairly regularly if this is occurring.
nanmc
in
MPN Voice
4 years ago
Polycythaemia Vera
I was diagnosed with
polycythaemia
vera about 11 yrs ago and spent years not having enough energy to lead an active life. Four years ago I was diagnosed with coeliac disease. While PV increases my levels of hemoglobin, CD decreases it.
I was diagnosed with
polycythaemia
vera about 11 yrs ago and spent years not having enough energy to lead an active life. Four years ago I was diagnosed with coeliac disease. While PV increases my levels of hemoglobin, CD decreases it.
Goliat
in
MPN Voice
4 years ago
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