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Hi all, I am new to this forum. I am 39. I have been diagnosed with ET with JAK2 at the age of 27 and have been on aspirin since. Unfortunately, my platelet count went up to 1100 this year and my hemacritis increased as well. I did blood mass test in the spring and it was confirmed that I have PV.
Hi all, I am new to this forum. I am 39. I have been diagnosed with ET with JAK2 at the age of 27 and have been on aspirin since. Unfortunately, my platelet count went up to 1100 this year and my hemacritis increased as well. I did blood mass test in the spring and it was confirmed that I have PV.
JustKeepSw1mming
in
MPN Voice
11 months ago
paraesthesia with Peg
Hi there, Has anyone else experienced increasing paraesthesia /numbness in their hands and feet whilst taking Peg interferon ? Did these symptoms resolve or increase over time for you? I was taking 45 fortnightly for 15months,which kept the haematocrit very stable I came off the peg 5 months ago due
Hi there, Has anyone else experienced increasing paraesthesia /numbness in their hands and feet whilst taking Peg interferon ? Did these symptoms resolve or increase over time for you? I was taking 45 fortnightly for 15months,which kept the haematocrit very stable I came off the peg 5 months ago due
Bobadog
in
MPN Voice
11 months ago
Risks of Pegasus?
I'm 79, with ET and JAK2. At present I take 500mg Hydroxy and 4×0.5 Anagrelide daily. My platelet count is 660 and slowly rising. I asked my consultant about changing to Pegasys but she said that interferons are not advised for the over-60s. Is this right? Why would my age make any difference? And will
I'm 79, with ET and JAK2. At present I take 500mg Hydroxy and 4×0.5 Anagrelide daily. My platelet count is 660 and slowly rising. I asked my consultant about changing to Pegasys but she said that interferons are not advised for the over-60s. Is this right? Why would my age make any difference? And will
Sivasi
in
MPN Voice
11 months ago
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Has anyone on Pegasus interferon had eye retina problems?
Well that’s my question. I keep wondering if Pegasus interferon would be a better medication for me rather than 9 hydroxycarbemide tablets per week for ET but now I’m worried about possible eye problems. Has anyone had retina problems on this drug? When a MPN specialist advises about interferon do they
Well that’s my question. I keep wondering if Pegasus interferon would be a better medication for me rather than 9 hydroxycarbemide tablets per week for ET but now I’m worried about possible eye problems. Has anyone had retina problems on this drug? When a MPN specialist advises about interferon do they
Na56
in
MPN Voice
11 months ago
Interferon Consideration Update
hi all, I wanted to provide an update on the ongoing discussions I’ve been having with the consultants at Guys regarding the consideration of me starting Interferon as a youngish 41yr old low risk PV patient.. I’ve had a couple of consultations now spanning the last 3 months and discussed the potential
hi all, I wanted to provide an update on the ongoing discussions I’ve been having with the consultants at Guys regarding the consideration of me starting Interferon as a youngish 41yr old low risk PV patient.. I’ve had a couple of consultations now spanning the last 3 months and discussed the potential
Steve_Essex
in
MPN Voice
11 months ago
Good news on mutant allele reduction on Jakafi.
Hopetohelp's post about mutant allele % prompted me to share some good news. I was diagnosed with PV and JAK2 V617F in July 2021 after a heart attack caused by a blocked artery. At that point my mutant allele frequency was 60%. I started on hydroxyurea, but as it did nothing to relieve my severe itching
Hopetohelp's post about mutant allele % prompted me to share some good news. I was diagnosed with PV and JAK2 V617F in July 2021 after a heart attack caused by a blocked artery. At that point my mutant allele frequency was 60%. I started on hydroxyurea, but as it did nothing to relieve my severe itching
Sewingtime
in
MPN Voice
1 year ago
High Risk?
I’ve seen the consultant today, all the NSG results are now back. He said they showed I was definitely transforming to MF, also that some markers showed I was in the high risk group for transforming to Leukaemia. I found that very scary. He said it would probably be a few years but that I would be monitored
I’ve seen the consultant today, all the NSG results are now back. He said they showed I was definitely transforming to MF, also that some markers showed I was in the high risk group for transforming to Leukaemia. I found that very scary. He said it would probably be a few years but that I would be monitored
lizzziep
in
MPN Voice
1 year ago
Quarterly follow up - switching to interferon
hello all went to my quarterly check up today after being on HU for 3-4 months and the results were less than what we’d hoped for. My platelets came down but have stalled out around the 8-900K mark. I was given the choice of upping the HU to 3x500mg a day or starting interferon. My hematologist
hello all went to my quarterly check up today after being on HU for 3-4 months and the results were less than what we’d hoped for. My platelets came down but have stalled out around the 8-900K mark. I was given the choice of upping the HU to 3x500mg a day or starting interferon. My hematologist
dbus1417
in
MPN Voice
1 year ago
Is peg interferon always slow to reduce platelet count?
Morning everyone , I wondered if anyone has experienced a slow journey in platelet reduction on peg interferon alpha like me….. I’m 56, fit and healthy with an active lifestyle. I have ET triple negative and take aspirin daily, diagnosed in April 2020. From Jan 2023 to date my platelet count has only
Morning everyone , I wondered if anyone has experienced a slow journey in platelet reduction on peg interferon alpha like me….. I’m 56, fit and healthy with an active lifestyle. I have ET triple negative and take aspirin daily, diagnosed in April 2020. From Jan 2023 to date my platelet count has only
Maxamber
in
MPN Voice
1 year ago
Surgery with an MPN ...XXX
I just wanted to write this post to help reassure any of you that may need surgery. I've had other health problems for quite some time now, and really needed a hysterectomy...the gynae surgeons were wary, due to my extra weight and my PV diagnosis. I was told in May that they thought I was too complex
I just wanted to write this post to help reassure any of you that may need surgery. I've had other health problems for quite some time now, and really needed a hysterectomy...the gynae surgeons were wary, due to my extra weight and my PV diagnosis. I was told in May that they thought I was too complex
RCBr
in
MPN Voice
1 year ago
Ruxalitinib and Peg interferon
AS previously mentioned my husband {He has PV and MPN} has for the past 6 years been on Ruxolitinib . He has now been advised that owing to quite a few skin cancers the last one being Squamous skin cancer with extensive scalp debridement. All in all in past 3 years he has had approx 7/8 basil cell
AS previously mentioned my husband {He has PV and MPN} has for the past 6 years been on Ruxolitinib . He has now been advised that owing to quite a few skin cancers the last one being Squamous skin cancer with extensive scalp debridement. All in all in past 3 years he has had approx 7/8 basil cell
waddles22
in
MPN Voice
1 year ago
Besremi after a year
This past week, I received the results of a bone marrow biopsy after being on Besremi for 12 months to treat PV (diagnosed 16 years prior to interferon treatment). I was very anxious about the results, because the bone marrow biopsy I got 2.5 months before starting Besremi showed more than minimal fibrosis
This past week, I received the results of a bone marrow biopsy after being on Besremi for 12 months to treat PV (diagnosed 16 years prior to interferon treatment). I was very anxious about the results, because the bone marrow biopsy I got 2.5 months before starting Besremi showed more than minimal fibrosis
GardNerd
in
MPN Voice
1 year ago
Treatment-free remission as a new goal for patients with PV
« Treatment-free remission Patients are considered to be in treatment-free remission when therapy is discontinued and the following occur: Complete hematologic response Deep molecular response Reversion of bone marrow picture Absence of vascular events and disease evolution No treatment restart
« Treatment-free remission Patients are considered to be in treatment-free remission when therapy is discontinued and the following occur: Complete hematologic response Deep molecular response Reversion of bone marrow picture Absence of vascular events and disease evolution No treatment restart
Manouche
in
MPN Voice
1 year ago
Besremi and thyroid
just seeing if anyone developed hypothyroidism after starting interferon. I know this can happen and can be a common occurrence with alpha or even beta interferon. I have no symptoms but they found it on my labs. My pcp just started thyroid replacement as this is pretty easy to manage once you get
just seeing if anyone developed hypothyroidism after starting interferon. I know this can happen and can be a common occurrence with alpha or even beta interferon. I have no symptoms but they found it on my labs. My pcp just started thyroid replacement as this is pretty easy to manage once you get
KLCTJC
in
MPN Voice
1 year ago
Due to start interferon
Hello, I haven’t posted in over 2 years but have been following the posts and great advice and support given. I was diagnosed with PV in Dec 2020 aged 41. I was on HU for afew months but decided to come off it and just do aspirin and venesection. That worked for last 2 years but platelets over 1000
Hello, I haven’t posted in over 2 years but have been following the posts and great advice and support given. I was diagnosed with PV in Dec 2020 aged 41. I was on HU for afew months but decided to come off it and just do aspirin and venesection. That worked for last 2 years but platelets over 1000
Deevie1
in
MPN Voice
1 year ago
Cervical screening positive for HPV
Hi, I am ET triple negative 7+ years, have recently changed from Hydroxy to Interferon 90mcg every two weeks, I have just had my results back from a cervical screen test and have tested positive for HPV but there are no abnormal cells so currently low risk for cervical cancer. As someone who is immune
Hi, I am ET triple negative 7+ years, have recently changed from Hydroxy to Interferon 90mcg every two weeks, I have just had my results back from a cervical screen test and have tested positive for HPV but there are no abnormal cells so currently low risk for cervical cancer. As someone who is immune
beckyluck
in
MPN Voice
1 year ago
Astaxanthin
Apologies for the offtopic but I thought this was an interesting anti-oxidant supplement although only preliminary research has been carried out on it as yet. It seems to have potential as a very powerful antioxidant but too much anti-oxidants can also be a bad thing (based on vitamin E and beta-carotene
Apologies for the offtopic but I thought this was an interesting anti-oxidant supplement although only preliminary research has been carried out on it as yet. It seems to have potential as a very powerful antioxidant but too much anti-oxidants can also be a bad thing (based on vitamin E and beta-carotene
Technoid
in
Pernicious Anaemia Society
1 year ago
Update, sort of good and not so good news
My bloods have been good for some time, but, they reduced my interferon to 90 and the HCT went up over the target 0.45, for three quarters, not by much, 0.47, 0.46, 0.47. Today they are still at 0.47, so I am having to go for a venesection, 1st in nearly 3 years. The good news is my allele burden
My bloods have been good for some time, but, they reduced my interferon to 90 and the HCT went up over the target 0.45, for three quarters, not by much, 0.47, 0.46, 0.47. Today they are still at 0.47, so I am having to go for a venesection, 1st in nearly 3 years. The good news is my allele burden
shiftzz
in
MPN Voice
1 year ago
itchy skin
hello , hope everyone is keeping well . I have been on Interferon 45 mcg for a month then increased to 90 mcg which I have been taking for three weeks but I have developed terrible itchy skin , after showering , clothes touching me even my fingers itch , the Interferon has worked well apart from this
hello , hope everyone is keeping well . I have been on Interferon 45 mcg for a month then increased to 90 mcg which I have been taking for three weeks but I have developed terrible itchy skin , after showering , clothes touching me even my fingers itch , the Interferon has worked well apart from this
Franko21
in
MPN Voice
1 year ago
Anagrelide
Hello all you good people, just a question about Anagrelide. How many people on this forum are taking it currently or have tried it in the past ? I have ET and on hydroxycarbomide, my platelets have been creeping up so my hydroxy has been increased which has helped but I am not happy with the side effects
Hello all you good people, just a question about Anagrelide. How many people on this forum are taking it currently or have tried it in the past ? I have ET and on hydroxycarbomide, my platelets have been creeping up so my hydroxy has been increased which has helped but I am not happy with the side effects
Janis12
in
MPN Voice
1 year ago
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