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new mutations
just had my second BMB a couple of months ago. Had been taking aspirin and monthly phlebotomy until 3 months ago when started hydroxyurea. My BMB now showed a new mutation IDH1 and allele burden increased from 24% to 52%. Didn’t need a phlebotomy this month but will be starting Besremi mid d June.
just had my second BMB a couple of months ago. Had been taking aspirin and monthly phlebotomy until 3 months ago when started hydroxyurea. My BMB now showed a new mutation IDH1 and allele burden increased from 24% to 52%. Didn’t need a phlebotomy this month but will be starting Besremi mid d June.
Teachme85
in
MPN Voice
1 year ago
Minor surgery after a stent
Has anyone had experience of surgery post stent? What did you do about the daily asprin? I am due to have minor surgery on my eyelid and the Ocuplastic surgeon has written to my cardiologist . The cardiologist writes that although it was 19 months ago and I am doing well he doesn't recommend suspending
Has anyone had experience of surgery post stent? What did you do about the daily asprin? I am due to have minor surgery on my eyelid and the Ocuplastic surgeon has written to my cardiologist . The cardiologist writes that although it was 19 months ago and I am doing well he doesn't recommend suspending
HedgeHogHome
in
British Heart Foundation
1 year ago
Can Apixaban and Edoxaban cause urinary retention ?
Hi everyone , i am Jean -François a 62 years old french Canadian and i have had atrial fibrillation for many years , i wear a pacemaker since 2008 and i have been on 31 mg aspirin for years . I have been prescribed apixaban for a pulmonary embolism in june 2021 which have been changed for edoxaban
Hi everyone , i am Jean -François a 62 years old french Canadian and i have had atrial fibrillation for many years , i wear a pacemaker since 2008 and i have been on 31 mg aspirin for years . I have been prescribed apixaban for a pulmonary embolism in june 2021 which have been changed for edoxaban
Oursfou1
in
AF Association
1 year ago
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Irregular platelets in PD
I have just enrolled Laurie Mischley's online Parkinson's School, and to say I'm finding it enlightening is an understatement. Importantly, it's prompted me to have my B12 (and various other) blood levels tested again for the first time since 2017. The bloods results show various low and high results
I have just enrolled Laurie Mischley's online Parkinson's School, and to say I'm finding it enlightening is an understatement. Importantly, it's prompted me to have my B12 (and various other) blood levels tested again for the first time since 2017. The bloods results show various low and high results
arty-fact
in
Cure Parkinson's
1 year ago
Insomnia Help
I’ve been struggling with insomnia pretty bad lately & it’s been hard even taking a nap. I’ve been on venesection only & have normal counts, but still struggling with sleep. I tried taking a herbal tea which was working really well & saw that you shouldn’t mix passionflower and aspirin together. I’ve
I’ve been struggling with insomnia pretty bad lately & it’s been hard even taking a nap. I’ve been on venesection only & have normal counts, but still struggling with sleep. I tried taking a herbal tea which was working really well & saw that you shouldn’t mix passionflower and aspirin together. I’ve
Nrl303
in
MPN Voice
1 year ago
air travel safety with an MPN
Could anyone weigh in on the safety of traveling by air, or in the mountains, for people with MPNs at risk of clotting? (I have PV, temporarily untreated aside from aspirin and supplements for inflammation, etc.)
Could anyone weigh in on the safety of traveling by air, or in the mountains, for people with MPNs at risk of clotting? (I have PV, temporarily untreated aside from aspirin and supplements for inflammation, etc.)
Ovidess
in
MPN Voice
1 year ago
Coronary artery spasm
I've been recently diagnosed with coronary artery spasm and already read a few posts on here about it. I'm taking isosorbide mononitrate 20mg twice daily and put on atorvastation 80mg and 75mg aspirin. I was already taking propranolol for anxiety and lansoprazole for acid reflux. This has really taken
I've been recently diagnosed with coronary artery spasm and already read a few posts on here about it. I'm taking isosorbide mononitrate 20mg twice daily and put on atorvastation 80mg and 75mg aspirin. I was already taking propranolol for anxiety and lansoprazole for acid reflux. This has really taken
unknownguy1
in
British Heart Foundation
1 year ago
Tachycardia
Rather a long post I’m afraid. In 2000 I was 44 and developed unstable angina over 4 months. My husband had BUPA with his work so I saw a cardiologist quickly, put on aspirin, Bisoprolol and GTN. The cardiologist was always unsure whether it was a blockage to my LAD or a spasm and I was due to undergo
Rather a long post I’m afraid. In 2000 I was 44 and developed unstable angina over 4 months. My husband had BUPA with his work so I saw a cardiologist quickly, put on aspirin, Bisoprolol and GTN. The cardiologist was always unsure whether it was a blockage to my LAD or a spasm and I was due to undergo
goldenbay
in
British Heart Foundation
1 year ago
Anyone with ET tried ginseng, ginko bilboa, or pomegranates to lower PC?
My son (19y/o) has ET, is JAK2+, and is home from college for the summer. He is currently on a daily aspirin, but I am concerned about his PC continuing to increase over the last month (from 1200 ish to 1400ish). His MPN specialist in NYC is awesome and has said that PC can be finicky. Perhaps finals
My son (19y/o) has ET, is JAK2+, and is home from college for the summer. He is currently on a daily aspirin, but I am concerned about his PC continuing to increase over the last month (from 1200 ish to 1400ish). His MPN specialist in NYC is awesome and has said that PC can be finicky. Perhaps finals
trainerliz
in
MPN Voice
1 year ago
dealing with being cold
My husband will be 3 years post LAD stemi single vessel two stents in July. Apical scar tissue His EF was 38%on discharge and increased to 40-45% the following year and was unchanged last January on follow up echo. Overall he has recovered well. He works as a mechanic and we have a small farm so
My husband will be 3 years post LAD stemi single vessel two stents in July. Apical scar tissue His EF was 38%on discharge and increased to 40-45% the following year and was unchanged last January on follow up echo. Overall he has recovered well. He works as a mechanic and we have a small farm so
EllenMcC
in
British Heart Foundation
1 year ago
Further advice, please!
Hi. Asking for advice again. I've attached a table I created of my Levo dose and test results since last August, just before I started any thyroid treatment. I have also attached the three pages of all my results from test on 10th May. I have a long history of coronary artery disease since 2010 when
Hi. Asking for advice again. I've attached a table I created of my Levo dose and test results since last August, just before I started any thyroid treatment. I have also attached the three pages of all my results from test on 10th May. I have a long history of coronary artery disease since 2010 when
UKmale_hypo
in
Thyroid UK
1 year ago
Having Rotator cuff repair tomorrow, and Moh's surgery next week.
Hi, Well, I made through the past week without aspirin and my anti-inflammatories, which I sorely missed, so that tomorrow they can fix my rotator cuff. Then next week, while I'm already out on leave, the basal cell cancer on my nose gets its turn. Hopefully, things go well, so please wish me luck
Hi, Well, I made through the past week without aspirin and my anti-inflammatories, which I sorely missed, so that tomorrow they can fix my rotator cuff. Then next week, while I'm already out on leave, the basal cell cancer on my nose gets its turn. Hopefully, things go well, so please wish me luck
PhysAssist
in
MPN Voice
1 year ago
ET , Jak2 positive.
Having being diagnosed with ET last August, I have been on aspirin only until my haematologist said that with platelets rising to 540 I should start hydroxycarbamide 500mg daily. I was also prescribed Allopurinol, 300mg daily. Has anyone else been prescribed Allopurinol? In the last few days I have
Having being diagnosed with ET last August, I have been on aspirin only until my haematologist said that with platelets rising to 540 I should start hydroxycarbamide 500mg daily. I was also prescribed Allopurinol, 300mg daily. Has anyone else been prescribed Allopurinol? In the last few days I have
Rebus12
in
MPN Voice
1 year ago
Any success after multiple failed DE transfers?
Just had my 6th DE failed transfer (3 different donors). Had ERA, ALICE and EMMA, scratch, Hysteroscopy (normal). NK cells - raised cytokines. Been on prednisolone and aspirin. Got 1 embroyo left in the freezer. Any advice/ suggestions much appreciated. Starting to lose hope.
Just had my 6th DE failed transfer (3 different donors). Had ERA, ALICE and EMMA, scratch, Hysteroscopy (normal). NK cells - raised cytokines. Been on prednisolone and aspirin. Got 1 embroyo left in the freezer. Any advice/ suggestions much appreciated. Starting to lose hope.
OT88
in
Fertility Network UK
1 year ago
Covid booster
Just wondering if anyone knows if I should be having the next booster. I have ET jak2 positive on aspirin only. My last booster was last September, I have not received a letter or text so not sure. I have got a letter explaining what condition I have from my haematologist, that I used for the last
Just wondering if anyone knows if I should be having the next booster. I have ET jak2 positive on aspirin only. My last booster was last September, I have not received a letter or text so not sure. I have got a letter explaining what condition I have from my haematologist, that I used for the last
Penny-10
in
MPN Voice
1 year ago
For the FET, taking Aspirin, when did you stop taking it (which weeks of pregnancy)?
Hi everyone, I have some questions related to Aspirin. I had a miscarriage two years ago (it was a natural pregnancy), the cause of it possibly due to chromosomes abnormal. Just in case, I took Aspirin for my first FET to make sure no blood was blocked, and my fertility clinic agreed to it. I have
Hi everyone, I have some questions related to Aspirin. I had a miscarriage two years ago (it was a natural pregnancy), the cause of it possibly due to chromosomes abnormal. Just in case, I took Aspirin for my first FET to make sure no blood was blocked, and my fertility clinic agreed to it. I have
Mary2022
in
Fertility Network UK - Pregnancy Support
1 year ago
Heart Failure/low sodium
Hi My dad going through a bad time at the moment. He is 89 and for several weeks about 8 as been having headaches fuzzy heads, he calls them dizzyness. He has a pacemaker which was changed a few months ago and a echocardiogram in March diagnosed a weaker left ventricle of 25 to 30% efficiency. He takes
Hi My dad going through a bad time at the moment. He is 89 and for several weeks about 8 as been having headaches fuzzy heads, he calls them dizzyness. He has a pacemaker which was changed a few months ago and a echocardiogram in March diagnosed a weaker left ventricle of 25 to 30% efficiency. He takes
Leythersrus1
in
British Heart Foundation
1 year ago
Upped my prednisone for knee inflammation and now I'm not sure how to reduce back to 1.5 mg.
You all have so much good advice on reducing prednisone which helped be to successfully reduce my dose to 1.5 mg, which I have been on for quite some time. (Many months, but reluctant to keep going as I was having other issues and didn't want to rock the boat further.). Recently my knee became swollen
You all have so much good advice on reducing prednisone which helped be to successfully reduce my dose to 1.5 mg, which I have been on for quite some time. (Many months, but reluctant to keep going as I was having other issues and didn't want to rock the boat further.). Recently my knee became swollen
jackswife
in
PMRGCAuk
1 year ago
ET and periods/menstruation
Hi - this is a question for those of you who have monthly periods, (or were still menstruating when you were diagnosed). I was diagnosed several months after going to see a doctor about spotting/dark clots up to a week before my regular period (in my late 30s)- I asked to be screened for cancer and
Hi - this is a question for those of you who have monthly periods, (or were still menstruating when you were diagnosed). I was diagnosed several months after going to see a doctor about spotting/dark clots up to a week before my regular period (in my late 30s)- I asked to be screened for cancer and
junebuggy
in
MPN Voice
1 year ago
Vitamins
Hi. I had a mild heart attack in October 2021, one stent fitted. Follow up echocardiogram ecg in April 2022, all good, told no further appointments unless there's any problems. I am currently on Candesartan, Bisoprolol, Omeprazole, Aspirin and Rosuvastatin. No one has reviewed this since October 2022
Hi. I had a mild heart attack in October 2021, one stent fitted. Follow up echocardiogram ecg in April 2022, all good, told no further appointments unless there's any problems. I am currently on Candesartan, Bisoprolol, Omeprazole, Aspirin and Rosuvastatin. No one has reviewed this since October 2022
Duvetdays15
in
British Heart Foundation
1 year ago
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