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Experiences with
Interferon alfa-2a
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PV and/or ET - JAK2+ - currently asymptomatic
This is my first posting with the support group. I was diagnosed with PV in March 2018 where at that point my hematocrit was 62 and of course the hemoglobin was also elevated. However, all other data within the CBC were normal to near normal at the time of diagnosis. After four (4) phlebotomies of the
This is my first posting with the support group. I was diagnosed with PV in March 2018 where at that point my hematocrit was 62 and of course the hemoglobin was also elevated. However, all other data within the CBC were normal to near normal at the time of diagnosis. After four (4) phlebotomies of the
Pat032018
in
MPN Voice
6 years ago
Pipeline of ataxia related research.
Found a report online being offered for $2000 that summarizes the current pipeline of all known ataxia related drugs. - - - Spinocerebellar Ataxia (SCA) - Companies Involved in Therapeutics Development Bio Blast Pharma Ltd Biohaven Pharmaceutical Holding Company Ltd Cadent Therapeutics Ionis Pharmaceuticals
Found a report online being offered for $2000 that summarizes the current pipeline of all known ataxia related drugs. - - - Spinocerebellar Ataxia (SCA) - Companies Involved in Therapeutics Development Bio Blast Pharma Ltd Biohaven Pharmaceutical Holding Company Ltd Cadent Therapeutics Ionis Pharmaceuticals
sunvox
in
Ataxia UK
6 years ago
Allow myself to introduce myself...
Hi I was diagnosed at almost 48 in January 2018. In November 2017 I went to the GP with pins and needles in my feet and got a full blood work up. The results came back with platelets that were a 'bit high' (over 900). The GP referred me to haematology, I was seen pretty quickly - by December I'd
Hi I was diagnosed at almost 48 in January 2018. In November 2017 I went to the GP with pins and needles in my feet and got a full blood work up. The results came back with platelets that were a 'bit high' (over 900). The GP referred me to haematology, I was seen pretty quickly - by December I'd
Not2bad
in
MPN Voice
6 years ago
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Interferon advice please
I've had PV for eleven years and recently started on Interferon Peg. I have had two injections so far (dose 90 per week) with no improvement whatsoever. My red cell and platelet count have in fact got much worse. Is it too early for the Interferon to be having any effect? Does it take longer than this
I've had PV for eleven years and recently started on Interferon Peg. I have had two injections so far (dose 90 per week) with no improvement whatsoever. My red cell and platelet count have in fact got much worse. Is it too early for the Interferon to be having any effect? Does it take longer than this
jazzyb
in
MPN Voice
6 years ago
Help
Advice please,I have ET,I take interferon alpha injections 2 times a week,tonight I took out fridge and it didn't feel cold enough,put thermostat inside checked was 10 should be under 5,so my fridge has been faulty,don't know how long could be weeks, phoned out of hrs they said shouldn't harm me but
Advice please,I have ET,I take interferon alpha injections 2 times a week,tonight I took out fridge and it didn't feel cold enough,put thermostat inside checked was 10 should be under 5,so my fridge has been faulty,don't know how long could be weeks, phoned out of hrs they said shouldn't harm me but
Jbut
in
MPN Voice
6 years ago
Today's Rheumy Appt: Wish You'd Been There! 👍⭐️🌈
I had a 9am rheumy appt today in the clinic overseen by one of the professors, and I have another next week in a clinic overseen by another professor. I haven't, and most definitely wouldn't , question why I have 2 appointments. Gold dust comes to mind. At today's I was called in by a very pleasant
I had a 9am rheumy appt today in the clinic overseen by one of the professors, and I have another next week in a clinic overseen by another professor. I haven't, and most definitely wouldn't , question why I have 2 appointments. Gold dust comes to mind. At today's I was called in by a very pleasant
Lupiknits
in
LUPUS UK
6 years ago
Experience with Pegasys
Just joined MPN Voice, I was diagnosed with ET 2 years ago, recently had a more definitive diagnosis, CALRins5 (Type 2), other non driver mutations not known. Only taking Aspirin at the moment but may be starting Pegasys at the beginning of 2019. I have read that a high proportion of people come off
Just joined MPN Voice, I was diagnosed with ET 2 years ago, recently had a more definitive diagnosis, CALRins5 (Type 2), other non driver mutations not known. Only taking Aspirin at the moment but may be starting Pegasys at the beginning of 2019. I have read that a high proportion of people come off
welshhuw
in
MPN Voice
6 years ago
MF with falling Hb: what drugs to go to next?
Hi guys, I have MF, platelets fine, whites a bit high (23), Hb dropping, now 90. On 10mg x2 Jakafi a day, spleen expanding again and liver. Haematologist not sure what to do - back in 4 weeks after he has taken advice. Mentioned Interferon and both higher and lower doses of Jakafi. Sorry about the similarity
Hi guys, I have MF, platelets fine, whites a bit high (23), Hb dropping, now 90. On 10mg x2 Jakafi a day, spleen expanding again and liver. Haematologist not sure what to do - back in 4 weeks after he has taken advice. Mentioned Interferon and both higher and lower doses of Jakafi. Sorry about the similarity
jane13
in
MPN Voice
6 years ago
Nauseous with ET
Hello all,haven't been on for a while,just after advice,Et for 9 years diagnosed at 39 after stroke,had tia'also bleed in bowl,been on interferon alpha injections 2x week for 9 years and asprin 75mg daily,just recently I have been feeling nausea of a morning and when travelling in car,don't see my hematologist
Hello all,haven't been on for a while,just after advice,Et for 9 years diagnosed at 39 after stroke,had tia'also bleed in bowl,been on interferon alpha injections 2x week for 9 years and asprin 75mg daily,just recently I have been feeling nausea of a morning and when travelling in car,don't see my hematologist
Jbut
in
MPN Voice
6 years ago
Peg Interferon and lower phosphate levels
Hi all, The last couple of blood tests I have had my phosphate level is below normal. I have been told normal is 0.8 and my readings have been 0.62 followed by 0.64. Between these 2 readings I had a phosphate top up in the form of a kind of electrolyte drink for a week. My symptoms are muscle aches and
Hi all, The last couple of blood tests I have had my phosphate level is below normal. I have been told normal is 0.8 and my readings have been 0.62 followed by 0.64. Between these 2 readings I had a phosphate top up in the form of a kind of electrolyte drink for a week. My symptoms are muscle aches and
Jocko
in
MPN Voice
6 years ago
Pegasy and interferon dosage
My heamo prescribed for me Pegasy 135mcg, he said dosage is same like roteferon 3UI, one weakly.Last year I was on only 3ui roteferon weakly , but stopped becouse of bad side effect . In last 12 month I have 9 venosection becouse my hct was 48 , platets always stable all 12 month 420 , rbc5,6, wbc
My heamo prescribed for me Pegasy 135mcg, he said dosage is same like roteferon 3UI, one weakly.Last year I was on only 3ui roteferon weakly , but stopped becouse of bad side effect . In last 12 month I have 9 venosection becouse my hct was 48 , platets always stable all 12 month 420 , rbc5,6, wbc
Lilly1958
in
MPN Voice
6 years ago
My Hep B journey...
Hi there, I was diagnosed with chronic hepatitis B in 2008 after apparently having the disease petty much symptom free for around 20 years. I was given entecavir which was quite effective in managing the condition, but in 2014 the virus had started to become resistant to the drug and it was discontinued
Hi there, I was diagnosed with chronic hepatitis B in 2008 after apparently having the disease petty much symptom free for around 20 years. I was given entecavir which was quite effective in managing the condition, but in 2014 the virus had started to become resistant to the drug and it was discontinued
Hb39
in
British Liver Trust
6 years ago
Does Interferon affect BMB results?
Dx ET JAK2+ with platelets rarely over 600 (just from blood tests). Was on hydroxyurea for 3 years, now on Roferon A (interferon) 3 x weekly for 10 months. I have just started noticing an improvement with symptoms but i would like to request a BMB and was wondering whether interferon can affect the results
Dx ET JAK2+ with platelets rarely over 600 (just from blood tests). Was on hydroxyurea for 3 years, now on Roferon A (interferon) 3 x weekly for 10 months. I have just started noticing an improvement with symptoms but i would like to request a BMB and was wondering whether interferon can affect the results
fee13
in
MPN Voice
6 years ago
Delaying Treatment No More - Pegasys, here I come.
It's been a little over 2 weeks since my first MPN doctor prescribed me with Pegasys which I decided to put off. I was debating for a while and speaking with another MPN specialist, I am going to start my peg interferon treatment this week. My platelets have increased from the 800s to now 960. I had
It's been a little over 2 weeks since my first MPN doctor prescribed me with Pegasys which I decided to put off. I was debating for a while and speaking with another MPN specialist, I am going to start my peg interferon treatment this week. My platelets have increased from the 800s to now 960. I had
annem22
in
MPN Voice
6 years ago
Flu jab and pneumonia
Iam et jak2 positive on 45mg interferon or pegasys ( still cant remember). Yesterday morning I went for my flu jab and was told I need pneumonia jab too. So had two at the same time. Felt fine till late afternoon then I started feel achy etc. Could not sleep all night and this morning have fever and
Iam et jak2 positive on 45mg interferon or pegasys ( still cant remember). Yesterday morning I went for my flu jab and was told I need pneumonia jab too. So had two at the same time. Felt fine till late afternoon then I started feel achy etc. Could not sleep all night and this morning have fever and
Elab
in
MPN Voice
6 years ago
Milburn - Information on Radioactive Phosphate P32
I have being suffering from ET for the last 11 years. This has been controlled very successfully with Hydroxycarbamide through this period. Earlier this year suffered leg ulcers. After circulation checks this put down to the prolonged use of Hydrox. Hydrox treatment stopped in April and ulcers started
I have being suffering from ET for the last 11 years. This has been controlled very successfully with Hydroxycarbamide through this period. Earlier this year suffered leg ulcers. After circulation checks this put down to the prolonged use of Hydrox. Hydrox treatment stopped in April and ulcers started
Milburn
in
MPN Voice
6 years ago
"What's New in MS Research" - The Latest from MSAA
Hello! MSAA is launching a new article series today, "What's New in MS Research," featuring updates on current MS-research topics. In this inaugural article, topics covered include: 1. Ibudilast in progressive MS 2. Fingolimod versus interferon beta 1-a in pediatric MS 3. Lifetime sun exposure and associates
Hello! MSAA is launching a new article series today, "What's New in MS Research," featuring updates on current MS-research topics. In this inaugural article, topics covered include: 1. Ibudilast in progressive MS 2. Fingolimod versus interferon beta 1-a in pediatric MS 3. Lifetime sun exposure and associates
MSAA_Staff
in
My MSAA Community
6 years ago
Just random thoughts for today I think
ms has joined our life, did anybody notice the young man just diagnosed (DX'd) at 15 years of age. I mentioned this last night to "she who must be obeyed" and she said looking back she had noticed things a long time before her Dx. Thinking about it I had noticed the same types of things, and just
ms has joined our life, did anybody notice the young man just diagnosed (DX'd) at 15 years of age. I mentioned this last night to "she who must be obeyed" and she said looking back she had noticed things a long time before her Dx. Thinking about it I had noticed the same types of things, and just
RoyceNewton
in
My MSAA Community
6 years ago
A game changer for Aussies with MPN
Pegasys (pegylated
interferon
Alfa
2a
) will be on the PBS from 1 August 2018. The Minister for Health, Greg Hunt, will make an announcement later this morning. Watch the news tonight, and see the article below on page 27 of the Melbourne Herald Sun today.”
Pegasys (pegylated
interferon
Alfa
2a
) will be on the PBS from 1 August 2018. The Minister for Health, Greg Hunt, will make an announcement later this morning. Watch the news tonight, and see the article below on page 27 of the Melbourne Herald Sun today.”
CommonDaisy
in
MPN Voice
6 years ago
Travel tips - Pegylated Interferon
Hi all. I wonder if anyone has tried Frio cooking travel wallets for travelling with interferon? We go away next week and it’ll be the first time we are away on an injection day so feeling really anxious about travelling with it and keeping it cool. My airline suggested I buy a Frio wallet which looks
Hi all. I wonder if anyone has tried Frio cooking travel wallets for travelling with interferon? We go away next week and it’ll be the first time we are away on an injection day so feeling really anxious about travelling with it and keeping it cool. My airline suggested I buy a Frio wallet which looks
LinaZW
in
MPN Voice
6 years ago
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