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Coronavirus Experience with APS
This is all anecdotal (i.e. my experience), but it may be of interest. I have primary APS (stroke, DVT, kidney clots, cerebral infarcts). INR = 3-4 + hydroxychloroquine. I got coronavirus (confirmed test result). Admitted into hospital following seizures, high temp >100, breathing difficulties, low
This is all anecdotal (i.e. my experience), but it may be of interest. I have primary APS (stroke, DVT, kidney clots, cerebral infarcts). INR = 3-4 + hydroxychloroquine. I got coronavirus (confirmed test result). Admitted into hospital following seizures, high temp >100, breathing difficulties, low
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Hughes Syndrome APS Forum
4 years ago
Pleurx catheter?
I had a pleurodesis just under 3 months ago. It hasn't worked as I had hoped. I am not sure if I am a candidate for a pleurx catheter as it seems the fluid buildup in my lungs is slow, at least for the time being. I noticed that the fluid build up rapidly increases every third treatment after I have
I had a pleurodesis just under 3 months ago. It hasn't worked as I had hoped. I am not sure if I am a candidate for a pleurx catheter as it seems the fluid buildup in my lungs is slow, at least for the time being. I noticed that the fluid build up rapidly increases every third treatment after I have
Natsmb
in
My Ovacome
4 years ago
One last Attack at this
Plan of attack Just ordered Hemorrhoids Suppository Stool Softener Coconut Oil (gonna start cooking with this) 2l Water jug Got confirmation I'm back to work in 3 weeks so going to give this one last attack haven't tried stool softener before but anything I've read it should be like toothpaste consistency
Plan of attack Just ordered Hemorrhoids Suppository Stool Softener Coconut Oil (gonna start cooking with this) 2l Water jug Got confirmation I'm back to work in 3 weeks so going to give this one last attack haven't tried stool softener before but anything I've read it should be like toothpaste consistency
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IBS Network
4 years ago
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Update on replies Re: Erythromelalgia
I am so very grateful to you all for your informative replies. Yesterday I had a phone call to come to Haematology at hospital straight away to examine my toe. I was seen by my Consultant's Registrar and after a second blood test, BP, pulse, ECG etc. on examination she said she thought it was a tiny
I am so very grateful to you all for your informative replies. Yesterday I had a phone call to come to Haematology at hospital straight away to examine my toe. I was seen by my Consultant's Registrar and after a second blood test, BP, pulse, ECG etc. on examination she said she thought it was a tiny
azaelea
in
MPN Voice
4 years ago
Nearly 9, bedwetting
Hi, my son has struggled with bed wetting on and off since he was 6. At this stage, his grandad died and he moved schools. Since then he's regularly wet the bed. Since lockdown, he has been better and had a few weeks dry, but this week he's been wet 5 nights in a row. Any suggestions? He's never had
Hi, my son has struggled with bed wetting on and off since he was 6. At this stage, his grandad died and he moved schools. Since then he's regularly wet the bed. Since lockdown, he has been better and had a few weeks dry, but this week he's been wet 5 nights in a row. Any suggestions? He's never had
Samson2020
in
ERIC
4 years ago
Statins and APS
Hi again guys , sorry I have another question! I have primary APS , touch wood as yet no clots etc and I had read statins are good for people with APS . My cholesterol is about 6 but typically I have some 'good ' cholesterol and a healthy diet ! I stopped taking statins , (tried 3 types) because they
Hi again guys , sorry I have another question! I have primary APS , touch wood as yet no clots etc and I had read statins are good for people with APS . My cholesterol is about 6 but typically I have some 'good ' cholesterol and a healthy diet ! I stopped taking statins , (tried 3 types) because they
Sevenstar
in
Hughes Syndrome APS Forum
4 years ago
COVID 19 and anticoagulants - ACUK launches first in the series of podcasts to help answer the questions we may all be thinking about now
Hosted by Eve Knight , the CEO and Co-founder of the Charity Anticoagulation UK. Eve is joined by Helen Williams, National Speciality Advisor for cardiovascular diseases fo NHS England. Watch the podcast at: https://youtu.be/Y9dyOGYlfZY Listen to our podcast at: https://open.spotify.com/show/514dRODlitYuOD2juhMlHE
Hosted by Eve Knight , the CEO and Co-founder of the Charity Anticoagulation UK. Eve is joined by Helen Williams, National Speciality Advisor for cardiovascular diseases fo NHS England. Watch the podcast at: https://youtu.be/Y9dyOGYlfZY Listen to our podcast at: https://open.spotify.com/show/514dRODlitYuOD2juhMlHE
Tillyclot
in
Anticoagulation Support
4 years ago
Palpatations and cold feet
Hope everyone is well. I've noticed in the last 3 weeks that whenever I have cold feet I start getting palpatations. I have to stop what I'm doing and lay down as I feel as if I'm going to pass out. If I can get a hot water bottle on my feet and warm them up I feel better. It only lasts till my feet
Hope everyone is well. I've noticed in the last 3 weeks that whenever I have cold feet I start getting palpatations. I have to stop what I'm doing and lay down as I feel as if I'm going to pass out. If I can get a hot water bottle on my feet and warm them up I feel better. It only lasts till my feet
Hatelupus
in
LUPUS UK
4 years ago
Tracheostomy
My husband is still sedated and on the tracheostomy. His oxygen level is still 35% and he requires the ventilator. It has been 5 weeks now since he is in icu and no progress and I am worried.
My husband is still sedated and on the tracheostomy. His oxygen level is still 35% and he requires the ventilator. It has been 5 weeks now since he is in icu and no progress and I am worried.
Rgsable
in
ICUsteps
4 years ago
AF and Surgery
What happens if you have AF controlled by tablets and for any reason need an operation and anasthesia I was reading on intent you can have a bigger risk of clots and stroke.The anticoagulants help minimise it but then you could bleed excessive. any comments
What happens if you have AF controlled by tablets and for any reason need an operation and anasthesia I was reading on intent you can have a bigger risk of clots and stroke.The anticoagulants help minimise it but then you could bleed excessive. any comments
olqp
in
AF Association
4 years ago
update on Dad
Dad still sedated, had Tracheostomy last week Wednesday, they have lowered his sedation managed to open his eyes a few times and they have started to wean him of but today he seemed to tired so they stop weaning him today. They also found his left arm weaker and keeping an eye on it.
Dad still sedated, had Tracheostomy last week Wednesday, they have lowered his sedation managed to open his eyes a few times and they have started to wean him of but today he seemed to tired so they stop weaning him today. They also found his left arm weaker and keeping an eye on it.
avnipiro
in
ICUsteps
4 years ago
The Actemra journey ...
Hello Everyone, It’s been several weeks since I was on here seeking advice about the PET scan and its efficacy in regard to GCA diagnosis. Because my CRP was 110 and ESR 53, Rheumatologist suspected GCA because, at 10mgs pred, the bloods were still high. She was right, and large vessel vasculitis
Hello Everyone, It’s been several weeks since I was on here seeking advice about the PET scan and its efficacy in regard to GCA diagnosis. Because my CRP was 110 and ESR 53, Rheumatologist suspected GCA because, at 10mgs pred, the bloods were still high. She was right, and large vessel vasculitis
LemonZest11
in
PMRGCAuk
4 years ago
Anxiety / PTSD in Lockdown
Hey guys, so I’ve been diagnosed with anxiety & depression for around 12 years and PTSD for 4 and I’ve really been struggling with my mental health during this lockdown. I’ve found that my panic attacks have gotten more frequent and I just can’t stop intrusive thoughts breaking me down pretty much everyday
Hey guys, so I’ve been diagnosed with anxiety & depression for around 12 years and PTSD for 4 and I’ve really been struggling with my mental health during this lockdown. I’ve found that my panic attacks have gotten more frequent and I just can’t stop intrusive thoughts breaking me down pretty much everyday
healthkick1973
in
Anxiety and Depression Support
4 years ago
Should I have had an at risk letter
I have AF, a leaking heart valve and high blood pressure, I take various tablets including Levothyroxine and warfarin, I have vitamin B12 injections and then in January this year I was diagnosed with ET so now I take Hydroxycarbamide oh I am over 70 as well. I cant help wondering if I should have be
I have AF, a leaking heart valve and high blood pressure, I take various tablets including Levothyroxine and warfarin, I have vitamin B12 injections and then in January this year I was diagnosed with ET so now I take Hydroxycarbamide oh I am over 70 as well. I cant help wondering if I should have be
driftstream
in
MPN Voice
4 years ago
Strategies for keeping vitamin K intake constant
Hi all, I would love to know how many of you are able to maintain relatively constant K intakes for consistent INR? I've been on Warfarin for around 11 weeks and struggling with it. Before my clots I was a bit random with my intake and probably could say didn't eat much greens. When I was out on Warfarin
Hi all, I would love to know how many of you are able to maintain relatively constant K intakes for consistent INR? I've been on Warfarin for around 11 weeks and struggling with it. Before my clots I was a bit random with my intake and probably could say didn't eat much greens. When I was out on Warfarin
gazaeee
in
Hughes Syndrome APS Forum
4 years ago
Update: Dad covid with Tracheostomy
5 days since trach been in place, still very sleepy but still lowering the sedation, but overnight his breathing was fast. Not sure reason Why?
5 days since trach been in place, still very sleepy but still lowering the sedation, but overnight his breathing was fast. Not sure reason Why?
avnipiro
in
ICUsteps
4 years ago
Hello, I'm new here.
Hi, everyone. I'm new to the forum and want to say hi. I had my pulmonary emboli in Aug. 2018 and was formally diagnosed with APS about a year and a half later, though unofficially in Feb. 2019. I have a great hematologist, whom I like and trust, but I've only recently learned much about APS. For example
Hi, everyone. I'm new to the forum and want to say hi. I had my pulmonary emboli in Aug. 2018 and was formally diagnosed with APS about a year and a half later, though unofficially in Feb. 2019. I have a great hematologist, whom I like and trust, but I've only recently learned much about APS. For example
niloreid2
in
Hughes Syndrome APS Forum
4 years ago
After Radiation Issues
Hello my dad had radiation to his humerus and hip area. About 6 weeks ago. He says he doesn’t notice any pain relief instead he feels more tired and same amount of pain and burning. I asked the Radiation Oncologist and urologist and they seem puzzled and said they have never heard of that? I looked at
Hello my dad had radiation to his humerus and hip area. About 6 weeks ago. He says he doesn’t notice any pain relief instead he feels more tired and same amount of pain and burning. I asked the Radiation Oncologist and urologist and they seem puzzled and said they have never heard of that? I looked at
Olivia007
in
Advanced Prostate Cancer
4 years ago
Sign up to the COVIDENCE UK Study and contribute to the fight against coronavirus. - Another chance to help
A team of doctors, scientists, public health specialists and health economists from six universities – Queen Mary University & Kings College, London, The London School of Hygiene & Tropical Medicine, Edinburgh & Swansea Universities and Queen’s University, Belfast – have joined together in a national
A team of doctors, scientists, public health specialists and health economists from six universities – Queen Mary University & Kings College, London, The London School of Hygiene & Tropical Medicine, Edinburgh & Swansea Universities and Queen’s University, Belfast – have joined together in a national
PMRpro
Ambassador
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PMRGCAuk
4 years ago
Possible symptomes of APS or Warfarin?
Hi all. I'm new to all of this and really struggling to understand and manage my anxiety. I was diagnosed with a DVT and PE 10 weeks ago and was placed on Warfarin. At the time they said it was unprovoked but I've subsequently had a positive result for APS. A month into taking Warfarin, I started to
Hi all. I'm new to all of this and really struggling to understand and manage my anxiety. I was diagnosed with a DVT and PE 10 weeks ago and was placed on Warfarin. At the time they said it was unprovoked but I've subsequently had a positive result for APS. A month into taking Warfarin, I started to
gazaeee
in
Hughes Syndrome APS Forum
4 years ago
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