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Good appt with MPN Specialist
Saw my MPN specialist today. Marks first 3-month appointment since diagnosis in Dec 2020 (until this time I had monthly or every 6 week appointments). As this was the longest interval between appointments and bloodwork since finding out I have Et (Jak2+), was a little nervous about the outcome. Good
Saw my MPN specialist today. Marks first 3-month appointment since diagnosis in Dec 2020 (until this time I had monthly or every 6 week appointments). As this was the longest interval between appointments and bloodwork since finding out I have Et (Jak2+), was a little nervous about the outcome. Good
Solyesh
in
MPN Voice
2 years ago
Hashimotos - inflammatory arthritis - hydroxychloroquine
Hi I have Hashimotos and a multitude of other ‘little conditions’ as you’ll all know. My main pain atm is my swollen finger joints. Due partly to covid I just had useless phone consultations with a rheumatologist and his locums. All saying you have osteoarthritis take an aspirin. Then a couple of months
Hi I have Hashimotos and a multitude of other ‘little conditions’ as you’ll all know. My main pain atm is my swollen finger joints. Due partly to covid I just had useless phone consultations with a rheumatologist and his locums. All saying you have osteoarthritis take an aspirin. Then a couple of months
Ziburu
in
Thyroid UK
2 years ago
IVIG after heart surgery and stopping IBRUTIMIB
12 months ago I was on an Ibrutinib clinical trial for my CLL. Ibrutinib worked great for me for years. I found out I needed a triple bypass due to 95% LAD artery blockage. Not good! A stent wasn’t an option in my case due to necessity for blood thinners. Can’t do blood thinners, aspirin and Irbutinib
12 months ago I was on an Ibrutinib clinical trial for my CLL. Ibrutinib worked great for me for years. I found out I needed a triple bypass due to 95% LAD artery blockage. Not good! A stent wasn’t an option in my case due to necessity for blood thinners. Can’t do blood thinners, aspirin and Irbutinib
misterbee
in
CLL Support
2 years ago
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Clopidegrol or Ticagrelor
I have asked my GP to review my medication since my HA and stent op in Sept 2022. I am on the usual Asprin Ramipril Ticagrelor Bisoprolol Atorvastatin. I have been getting burning arm pains since then. He only suggested changing Ticagrelor to Clopidegrol. I am really in confused state as to whether to
I have asked my GP to review my medication since my HA and stent op in Sept 2022. I am on the usual Asprin Ramipril Ticagrelor Bisoprolol Atorvastatin. I have been getting burning arm pains since then. He only suggested changing Ticagrelor to Clopidegrol. I am really in confused state as to whether to
Hamedk
in
British Heart Foundation
2 years ago
Fragmin and aspirin
Hi again, Injured myself, like I wrote below, and have therefore been shooting 5000 IU of Fragmin every day, and not sure when I am allowed to quit it. I am writing this post since I am a bit unsure whether I should put baby aspirin on hold or not, or halve the dose. Been receiving mixed advise from
Hi again, Injured myself, like I wrote below, and have therefore been shooting 5000 IU of Fragmin every day, and not sure when I am allowed to quit it. I am writing this post since I am a bit unsure whether I should put baby aspirin on hold or not, or halve the dose. Been receiving mixed advise from
Bigcheat
in
MPN Voice
2 years ago
Seeing an MPN Specialist tomorrow!
I have an appointment at Stanford with an MPN Specialist tomorrow. Going on 5 years with ET+CALR and currently taking aspirin and 2 pills of Hydrea daily AND 90mcg of Pegasys once a week. We are in a transitional period right now and I will eventually just be taking Pegasys and aspirin. Took my 4th dose
I have an appointment at Stanford with an MPN Specialist tomorrow. Going on 5 years with ET+CALR and currently taking aspirin and 2 pills of Hydrea daily AND 90mcg of Pegasys once a week. We are in a transitional period right now and I will eventually just be taking Pegasys and aspirin. Took my 4th dose
Zeppelin11
in
MPN Voice
2 years ago
aspirin
does anyone on here use gastric coated aspirin I have just read it not very efficient
does anyone on here use gastric coated aspirin I have just read it not very efficient
ChillyAsh34
in
MPN Voice
2 years ago
FET Donor egg transfer medication
Hi all I've just started my medication for FET, I'm taking 2mg 3 times a day progynova untill womb thickens ,75mg of baby aspirin and will start progesterone pessaries 4 days before transfer. What was everyone else's medication like. Mine seems quite basic is this normal I'm also 45yrs old
Hi all I've just started my medication for FET, I'm taking 2mg 3 times a day progynova untill womb thickens ,75mg of baby aspirin and will start progesterone pessaries 4 days before transfer. What was everyone else's medication like. Mine seems quite basic is this normal I'm also 45yrs old
Hidden
in
Fertility Network UK
2 years ago
does Ibrance cause gastritis? FODMAP diet helps diarrhea from Ibrance.
I have estrogen positive MBC since 2018 and on Ibrance and Faslodex since that time. I have been in remission for 18 months. one year ago I had a colonoscopy and endoscopy which showed severe stomach inflammation. My symptoms were persistent nausea and frequent diarrhea. I took a course of proton pump
I have estrogen positive MBC since 2018 and on Ibrance and Faslodex since that time. I have been in remission for 18 months. one year ago I had a colonoscopy and endoscopy which showed severe stomach inflammation. My symptoms were persistent nausea and frequent diarrhea. I took a course of proton pump
cheflala
in
SHARE Metastatic Breast Cancer
2 years ago
In need of Reassurance
Hello to all you lovely hearties out there. My dad is a fellow hearty and has dilated cardiomyopathy, like myself but his symptoms manifest differently to my own and he additionally has a leaky mitral valve (has had it for many years - since before I was born). Before his diagnosis of cardiomyopathy
Hello to all you lovely hearties out there. My dad is a fellow hearty and has dilated cardiomyopathy, like myself but his symptoms manifest differently to my own and he additionally has a leaky mitral valve (has had it for many years - since before I was born). Before his diagnosis of cardiomyopathy
MummaSoap
in
British Heart Foundation
2 years ago
Change from PV?
I was diagnosed 3 years ago with PV due to being Jak2+ & having an elevated hematocrit. I was later diagnosed as MPN - U based on my April 2022 BMB. I had no scarring in my bone marrow either.I was on hydroxyurea for a year but stopped in November due to persistent nausea. I only take aspirin. Now my
I was diagnosed 3 years ago with PV due to being Jak2+ & having an elevated hematocrit. I was later diagnosed as MPN - U based on my April 2022 BMB. I had no scarring in my bone marrow either.I was on hydroxyurea for a year but stopped in November due to persistent nausea. I only take aspirin. Now my
ERei
in
MPN Voice
2 years ago
unstable angina
Hi I have been in and out of hospital since December with unstable angina. I am currently waiting for my 3rd angiogram so they can try drilling the blockage and fit a stent. 100 percent blocked right coronary artery double vessel disease. I am on so many tablets that I feel,like a zombie. Lisinopril
Hi I have been in and out of hospital since December with unstable angina. I am currently waiting for my 3rd angiogram so they can try drilling the blockage and fit a stent. 100 percent blocked right coronary artery double vessel disease. I am on so many tablets that I feel,like a zombie. Lisinopril
Fourwhitesheps
in
British Heart Foundation
2 years ago
Getting Specialist Help
Hi everyone, I am really hoping I can get a bit of advice on my situation. I was diagnosed with ET Jak2 positive just over a year ago and being over 60 I was put straight into daily aspirin and Hydroxycarbamide . This has definitely helped my symptoms but very often have problems with joint pain, slight
Hi everyone, I am really hoping I can get a bit of advice on my situation. I was diagnosed with ET Jak2 positive just over a year ago and being over 60 I was put straight into daily aspirin and Hydroxycarbamide . This has definitely helped my symptoms but very often have problems with joint pain, slight
Yoganana1
in
MPN Voice
2 years ago
Petechiae
Hi, has anyone experienced the above (small blood spots on the face)? I've noticed mine a while ago and they seem to be getting worse. I'm on pred, methotrexate, hydroxychloroquine, aspirin, clopidogrel, bisoprol and a couple of high blood pressure tablets. Should I be worried or are they just a side
Hi, has anyone experienced the above (small blood spots on the face)? I've noticed mine a while ago and they seem to be getting worse. I'm on pred, methotrexate, hydroxychloroquine, aspirin, clopidogrel, bisoprol and a couple of high blood pressure tablets. Should I be worried or are they just a side
Deiniol
in
LUPUS UK
2 years ago
LVSD diagnosis
Hi all, This is a great forum full of excellent advice and personal experiences. I’m 57 and in December was fine. Went on a winter hol, walked miles. New Year’s Eve, started to feel rough. Viral infection. Off sick for a week. By 19th, woke up feeling breathless and ended up in A&E. Long and short
Hi all, This is a great forum full of excellent advice and personal experiences. I’m 57 and in December was fine. Went on a winter hol, walked miles. New Year’s Eve, started to feel rough. Viral infection. Off sick for a week. By 19th, woke up feeling breathless and ended up in A&E. Long and short
OldPlymothian1965
in
British Heart Foundation
2 years ago
Cytokines and MPN
I read the different Post here almost everyday and I am amazed and very great greatful about how much I have learn from everyone.. Thank you! I do have a specific question concerning my MPN journey.. Feeling really sick and having bumps on my head as well as an occasional face swelling, I ended
I read the different Post here almost everyday and I am amazed and very great greatful about how much I have learn from everyone.. Thank you! I do have a specific question concerning my MPN journey.. Feeling really sick and having bumps on my head as well as an occasional face swelling, I ended
StellaPFM
in
MPN Voice
2 years ago
Not a heart attack
Hi all, At the beginning of January I was admitted to hospital and was told I'd had a heart attack at the age of 36. The doctor said that as I had chest pains and a high level of troponin in my system it was a heart attack. I also had a resting heart rate of between 120-150. After a CT scan, angiogram
Hi all, At the beginning of January I was admitted to hospital and was told I'd had a heart attack at the age of 36. The doctor said that as I had chest pains and a high level of troponin in my system it was a heart attack. I also had a resting heart rate of between 120-150. After a CT scan, angiogram
LeeOliverHunt
in
British Heart Foundation
2 years ago
enteric coated aspirin
curious how many people take this on an empty stomach. I have always taken after meals but told this is wrong.
curious how many people take this on an empty stomach. I have always taken after meals but told this is wrong.
Purpled
in
British Heart Foundation
2 years ago
pain relief for headache/sore throats after AF
hi all. I am new to this group. Pleased to join you all. I have just reverted back to sinus after 8 days in AF. This is the 3rd time in 6 months. Each time reverted back in about a week. Unfortunately this time I’ve gone back to sinus but have contracted a stinking cold/flu. Are there any pain killers
hi all. I am new to this group. Pleased to join you all. I have just reverted back to sinus after 8 days in AF. This is the 3rd time in 6 months. Each time reverted back in about a week. Unfortunately this time I’ve gone back to sinus but have contracted a stinking cold/flu. Are there any pain killers
OscarN
in
AF Association
2 years ago
Meds or not meds.
I was diagnosed 2009 (or thereabouts) with JAK2 mutation discovered after BMB because of enlarged spleen. Platelets have been around 450-500 for all those years except for a couple of 570ish. No medication. No discernable symptoms. Now I am 71 and my GP wrote to blood clinic asking if I can cut blood
I was diagnosed 2009 (or thereabouts) with JAK2 mutation discovered after BMB because of enlarged spleen. Platelets have been around 450-500 for all those years except for a couple of 570ish. No medication. No discernable symptoms. Now I am 71 and my GP wrote to blood clinic asking if I can cut blood
Franju
in
MPN Voice
2 years ago
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