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ET diagnosed at 85 yrs. Failed HU because of side effects but platelets down to 555. Considering age and quality of life issues..........
What we would like to know is what approaches have other 85 yr olds taken. My husband is CALR pos. No hx of Thrombotic event. Has h/o borderline kidney disease per labs. Getting injections in the eye for macular degeneration. From my reading, he would be considered moderate category for ET. The Hematologist
What we would like to know is what approaches have other 85 yr olds taken. My husband is CALR pos. No hx of Thrombotic event. Has h/o borderline kidney disease per labs. Getting injections in the eye for macular degeneration. From my reading, he would be considered moderate category for ET. The Hematologist
endlessfun
in
MPN Voice
2 years ago
Besremi - CBC after the 11th dose kept at 175mcg
Just want to share my Besremi experience for anything to be learned from it. Above picture shows my CBC after the 11th dose (results of 7/19/2022; 1st dose results was on 2/18/2022). HISTORY: Diagnosed with PV 4 years ago; JAK2 positive with very low erythropoeitin; I am now 64 years old; Only phlebotomy
Just want to share my Besremi experience for anything to be learned from it. Above picture shows my CBC after the 11th dose (results of 7/19/2022; 1st dose results was on 2/18/2022). HISTORY: Diagnosed with PV 4 years ago; JAK2 positive with very low erythropoeitin; I am now 64 years old; Only phlebotomy
Pat032018
in
MPN Voice
2 years ago
LV ejection fraction 55% - borderline abnormal?
Hi again, Had my MRI results. Everything was fine but my LV EF was estimated to be 55%. Given my left bundle branch block, sinus tachycardia, and ongoing symptoms, I’m just looking for others’ thoughts and experiences. From what Dr Google tells me (I know, I know but when they throw random numbers
Hi again, Had my MRI results. Everything was fine but my LV EF was estimated to be 55%. Given my left bundle branch block, sinus tachycardia, and ongoing symptoms, I’m just looking for others’ thoughts and experiences. From what Dr Google tells me (I know, I know but when they throw random numbers
Becky-88
in
British Heart Foundation
2 years ago
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prednosolone + aspirin+ amoxicillin
ibe been having stomach and back pains for some time now .. used to be temporary first times lately have been frequent, so I went for check up did some test there including urinalysis.. Didn't find anything wrong. so they prescribed me with amoxicillin prednisolone and aspirin toldme I have to take
ibe been having stomach and back pains for some time now .. used to be temporary first times lately have been frequent, so I went for check up did some test there including urinalysis.. Didn't find anything wrong. so they prescribed me with amoxicillin prednisolone and aspirin toldme I have to take
Ushern
in
PMRGCAuk
2 years ago
Sudden drop in EF
Hello everyone, I recently posted about my husbands severe anaemia and had some really helpful feedback on what to do about it. Shortly after that post I noticed crackling in my husbands lungs and convinced him to get to A&E as he was breathless at rest. They’ve done an ultrasound on his heart and
Hello everyone, I recently posted about my husbands severe anaemia and had some really helpful feedback on what to do about it. Shortly after that post I noticed crackling in my husbands lungs and convinced him to get to A&E as he was breathless at rest. They’ve done an ultrasound on his heart and
irishwife93
in
British Heart Foundation
2 years ago
Clopidigrel and GI bleeds
Anyone experience GI bleeds while using clopidogrel after coronary artery stunting. This is my third hospitalization for bleeding after having 2 stents put in 7 months ago. The common wisdom is to be on Clop. for a year after stunting but after many tests, scopes etc all signs are pointing to my systems
Anyone experience GI bleeds while using clopidogrel after coronary artery stunting. This is my third hospitalization for bleeding after having 2 stents put in 7 months ago. The common wisdom is to be on Clop. for a year after stunting but after many tests, scopes etc all signs are pointing to my systems
TSOTLS
in
British Heart Foundation
2 years ago
Steroids v Rituximab - any advice/opinions?
so I’ve not been on here for a very long time while I’ve been going round the houses with different consultants. I’m now in the position where I’m getting bad flares and high ANA but a bit of a question mark over whether it’s lupus or multiple autoimmune issues causing it. MCAS is strongly suspected
so I’ve not been on here for a very long time while I’ve been going round the houses with different consultants. I’m now in the position where I’m getting bad flares and high ANA but a bit of a question mark over whether it’s lupus or multiple autoimmune issues causing it. MCAS is strongly suspected
Mifford
in
LUPUS UK
2 years ago
Confusing outcome from mitral valve repair
My 9 year old son underwent open heart surgery in March for mitral valve repair for servere regurgitation. They are still trying to find out what caused it, all they know is he’s had some sort of infection/inflammation of the valves some point. Can’t say how long ago but the valve leaflets were like
My 9 year old son underwent open heart surgery in March for mitral valve repair for servere regurgitation. They are still trying to find out what caused it, all they know is he’s had some sort of infection/inflammation of the valves some point. Can’t say how long ago but the valve leaflets were like
ToniLou
in
British Heart Foundation
2 years ago
Painful hip and leg pain
Still waiting on results of bone marrow , after being newly diagnosed withET. Hip and leg ever painful, can anyone advise if this is a symptom of ET, or just a aging problem. Worse after getting up from sitting and in bed.I’m still only taking aspirin. I have a appointment with MPN Specialist, but
Still waiting on results of bone marrow , after being newly diagnosed withET. Hip and leg ever painful, can anyone advise if this is a symptom of ET, or just a aging problem. Worse after getting up from sitting and in bed.I’m still only taking aspirin. I have a appointment with MPN Specialist, but
Hannah2308
in
MPN Voice
2 years ago
don’t know how I should feel
am feeling confused scared then ok I got diagnosed last month with ET and the Jak2 am currently taking aspirin go to see the doctors tomorrow
am feeling confused scared then ok I got diagnosed last month with ET and the Jak2 am currently taking aspirin go to see the doctors tomorrow
Staroftheday
in
MPN Voice
2 years ago
Medication PV advice please
Hi everyone, am newly diagnosed with PV and know at next appt will have discussion around meds, I am 60 no thrombosis events, I am finding it all so overwhelming especially around meds, currently venesection and asprin and antihistamine, is hydroxy always the first med given,I really don't want this
Hi everyone, am newly diagnosed with PV and know at next appt will have discussion around meds, I am 60 no thrombosis events, I am finding it all so overwhelming especially around meds, currently venesection and asprin and antihistamine, is hydroxy always the first med given,I really don't want this
Cityreach
in
MPN Voice
2 years ago
gout - aspirin?
hi. I’m 4 months post CABG x 2 and 6 months since a stent and going on all the meds including aspirin Clopidogrel ramipril bisoprolol Statins etc etc. I thought I’d got away without side effects but I’ve now had two severe gout attacks in the past month. Joints in my feet swell up with extreme pain and
hi. I’m 4 months post CABG x 2 and 6 months since a stent and going on all the meds including aspirin Clopidogrel ramipril bisoprolol Statins etc etc. I thought I’d got away without side effects but I’ve now had two severe gout attacks in the past month. Joints in my feet swell up with extreme pain and
Peas23
in
British Heart Foundation
2 years ago
Daily Dalteparin
Hi, I had OHSS after my eggs collected tonight last year and was admitted to hospital as it was so severe. I then suffered a traumatic stroke, witnessed by my husband. Thankfully I am nearly back to full health apart from some balance issues and mild weakness and fatigue. As a result, I have to
Hi, I had OHSS after my eggs collected tonight last year and was admitted to hospital as it was so severe. I then suffered a traumatic stroke, witnessed by my husband. Thankfully I am nearly back to full health apart from some balance issues and mild weakness and fatigue. As a result, I have to
Am919
in
Fertility Network UK
2 years ago
New member introduction
First I would like to thank everyone who contributes to this forum. I've only been a member for a couple of days, but already appreciate the helpful knowledge conveyed by others. I was diagnosed with polycythemia vera in late 2021 after a blood clot in my small toe led to blood tests ( HCT 62.9, RBC
First I would like to thank everyone who contributes to this forum. I've only been a member for a couple of days, but already appreciate the helpful knowledge conveyed by others. I was diagnosed with polycythemia vera in late 2021 after a blood clot in my small toe led to blood tests ( HCT 62.9, RBC
PupsBestFriends
in
MPN Voice
2 years ago
Heart scan
hi all In May I had a 2nd heart scan 19mnths after HA and just recieved a consultant letter stating that my heart is quite reassuring and nearly back to normal. Fantastic news, however i am still having an intermittent sharp pain at the side of my left rib , when I get it I cannot inhale deeply. Does
hi all In May I had a 2nd heart scan 19mnths after HA and just recieved a consultant letter stating that my heart is quite reassuring and nearly back to normal. Fantastic news, however i am still having an intermittent sharp pain at the side of my left rib , when I get it I cannot inhale deeply. Does
Gigi1958
in
British Heart Foundation
2 years ago
Advice needed please. Recently diagnosed with Atherosclerosis,given Statins, 75mg Asprin and Clyceryl Trinitrate spry.
Hi all. Recently diagnosed with Atherosclerosis, given Statins, 75mg Asprin and Clyceryl Trinitrate spray. Told by my GP if pain persists after using spray to call 999. I am having pain more or less constantly even getting woken up with it but it does go away when I use the spray. What advice would
Hi all. Recently diagnosed with Atherosclerosis, given Statins, 75mg Asprin and Clyceryl Trinitrate spray. Told by my GP if pain persists after using spray to call 999. I am having pain more or less constantly even getting woken up with it but it does go away when I use the spray. What advice would
Lulu1955
in
British Heart Foundation
2 years ago
Severe Anaemia in HF
Hi everyone Long post incoming! My husband recently had a HA (LVAD blockage) at 39 years old and now has HF. His EF 35% was when first admitted to hospital, now up to 45% 10 weeks later. Severe anaemia seems to have played a huge part in my husbands heart problems and is still an issue for him.
Hi everyone Long post incoming! My husband recently had a HA (LVAD blockage) at 39 years old and now has HF. His EF 35% was when first admitted to hospital, now up to 45% 10 weeks later. Severe anaemia seems to have played a huge part in my husbands heart problems and is still an issue for him.
irishwife93
in
British Heart Foundation
2 years ago
Confused & anxious about APS
Hello. In 11/2020 I developed necrotic finger tip ulcers on 2 fingers. Saw vascular surgeon who said Burgers since I was a long time smoker. Referred to see a rheumatologist , & B2 g igm was high. Nothing else. She said aspirin .I stopped smoking. Thinking it was Buergers, was referred to a
Hello. In 11/2020 I developed necrotic finger tip ulcers on 2 fingers. Saw vascular surgeon who said Burgers since I was a long time smoker. Referred to see a rheumatologist , & B2 g igm was high. Nothing else. She said aspirin .I stopped smoking. Thinking it was Buergers, was referred to a
Rekrats
in
Hughes Syndrome APS Forum
2 years ago
natural remedies
hi everyone I been to see the haematologist yesterday my first face to face appointment, I had another blow to the brain, when she explained I have another rare condition as well as high platelets, jak2 and something else which was only discovered by the medical researchers 3yrs ago and sorry I have
hi everyone I been to see the haematologist yesterday my first face to face appointment, I had another blow to the brain, when she explained I have another rare condition as well as high platelets, jak2 and something else which was only discovered by the medical researchers 3yrs ago and sorry I have
Tyray123
in
MPN Voice
2 years ago
Aspirin and Warfarin over the top
Hi I have now been given Aspirin 75mg to go a long with the 3.5mg of Warfarin also my Atorastatin has been increased to 40mg. Started to think this is a bit over the top with the amount of bruises that I am now finding on my hands and arms Anyone else have this ?
Hi I have now been given Aspirin 75mg to go a long with the 3.5mg of Warfarin also my Atorastatin has been increased to 40mg. Started to think this is a bit over the top with the amount of bruises that I am now finding on my hands and arms Anyone else have this ?
ChasNick
in
British Heart Foundation
2 years ago
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