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Gaucher disease type 2 (GD2)
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Flecainide (again)
Very interesting post by FraserB earlier. My problem is the opposite. Cardiologist raised my dose to 100mg x2 per day after being on 50mg x2 per day for a year and a half. After the third dose of the 100mg 2 hours before bed I felt terrible. The 2nd dose in morning I felt good with no reaction. Was worried
Very interesting post by FraserB earlier. My problem is the opposite. Cardiologist raised my dose to 100mg x2 per day after being on 50mg x2 per day for a year and a half. After the third dose of the 100mg 2 hours before bed I felt terrible. The 2nd dose in morning I felt good with no reaction. Was worried
Afibtastic
in
Atrial Fibrillation Support
4 months ago
How to monitor PCa after you stop ADT?
I've been on Zoladex implants for coming up to 4 years in February. I plan to stop ADT next time when it's due, as my PSA is always "undetectable" and it's been 4 years of physical and mental torment for me (the side effects). I think that enough is enough now. Does anyone have advice on the best ways
I've been on Zoladex implants for coming up to 4 years in February. I plan to stop ADT next time when it's due, as my PSA is always "undetectable" and it's been 4 years of physical and mental torment for me (the side effects). I think that enough is enough now. Does anyone have advice on the best ways
BluesmanNick
in
Advanced Prostate Cancer
7 months ago
Eliquis and AF symptoms
Hi all, I've been following the posts on this forum and have received helpful feedback re blood thinners and AF. I was recently diagnosed with AF and was put on Eliquis, which I've not yet started because of what I heard about the side effects. I have bradycardia and experience flutters and lightheadedness
Hi all, I've been following the posts on this forum and have received helpful feedback re blood thinners and AF. I was recently diagnosed with AF and was put on Eliquis, which I've not yet started because of what I heard about the side effects. I have bradycardia and experience flutters and lightheadedness
Calypso76
in
Atrial Fibrillation Support
4 months ago
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Bedranol
I have been prescribed Bedranol ( propranolol hydrochloride) for my anxiety. Just to use as and when I feel anxious . Has anyone else used this beta blocker ? I suffer from IBS - D and I’m worried it might cause diarrhoea. This would defeat the object of taking it completely!
I have been prescribed Bedranol ( propranolol hydrochloride) for my anxiety. Just to use as and when I feel anxious . Has anyone else used this beta blocker ? I suffer from IBS - D and I’m worried it might cause diarrhoea. This would defeat the object of taking it completely!
Jess54
in
IBS Network
4 months ago
Peginterferon and platelets
I started taking peginterferon 45 mg in November 2023 with a platelet count of 860. Since then, my bloods have been checked monthly, and my dose gradually increased. On Monday I will start 180 mg, alternating the dose weekly with 135 mg for a month, as my platelet count is now 665 and my Haematologist
I started taking peginterferon 45 mg in November 2023 with a platelet count of 860. Since then, my bloods have been checked monthly, and my dose gradually increased. On Monday I will start 180 mg, alternating the dose weekly with 135 mg for a month, as my platelet count is now 665 and my Haematologist
Lyndjs
in
MPN Voice
4 months ago
Post Cardioversion advice
After 4 ‘failed’ ablations, I yesterday had a cardioversion for atrial tachycardia. I went back into NSR after only one shock on the lowest setting and my EP was pleased with how the procedure went. Does anyone have any advice about how I can try to stay in sinus? I know it’s a bit of a lottery but
After 4 ‘failed’ ablations, I yesterday had a cardioversion for atrial tachycardia. I went back into NSR after only one shock on the lowest setting and my EP was pleased with how the procedure went. Does anyone have any advice about how I can try to stay in sinus? I know it’s a bit of a lottery but
frankiec5
in
Atrial Fibrillation Support
4 months ago
Vasculitis Awarenes Month
May is vasculitis awareness month. Microscopic Polyangiitis (MPA) is inflammation of the small and sometimes medium sized blood vessels. It usually affects the renal function and/or lungs. Get a glimpse of Gemma's journey with MPA vasculitis. If you would like to donate to Vasculitis UK, please
May is vasculitis awareness month. Microscopic Polyangiitis (MPA) is inflammation of the small and sometimes medium sized blood vessels. It usually affects the renal function and/or lungs. Get a glimpse of Gemma's journey with MPA vasculitis. If you would like to donate to Vasculitis UK, please
zoe69
Vasculitis UK
in
Vasculitis UK
4 months ago
Can you live longer than 20 years with cirrhosis
18 years ago I was very ill with Hepatises/cirrhosis. Since then I have done ok. I have portal hypertension but no varices. Occasion fluid retention in my legs but no ascites. Enlarged spleen 17mm. I have been asking the doctors if I can live past 20 years with this disease. The responsive have been
18 years ago I was very ill with Hepatises/cirrhosis. Since then I have done ok. I have portal hypertension but no varices. Occasion fluid retention in my legs but no ascites. Enlarged spleen 17mm. I have been asking the doctors if I can live past 20 years with this disease. The responsive have been
1of5
in
British Liver Trust
7 months ago
Diagnoses
Has anyone been diagnosed with an autoimmune condition without having positive blood tests? I've been trying in vain since 2006, got most of lupus symptoms but Ana either 1:180 or negative and other tests negative .
Has anyone been diagnosed with an autoimmune condition without having positive blood tests? I've been trying in vain since 2006, got most of lupus symptoms but Ana either 1:180 or negative and other tests negative .
catblue1865
in
LUPUS UK
5 months ago
Haematologists consultant
Hi I’ve been trying to get help with my Pernicious anemia diagnosis which my mum & sister had they have both passed away now, but the drs are not helping I only got diagnosed through me asking for further tests after they initially told me my B12 was high 2000 so I wasn’t deficient!! , my dr didn’t
Hi I’ve been trying to get help with my Pernicious anemia diagnosis which my mum & sister had they have both passed away now, but the drs are not helping I only got diagnosed through me asking for further tests after they initially told me my B12 was high 2000 so I wasn’t deficient!! , my dr didn’t
Windyway
in
Pernicious Anaemia Society
5 months ago
My journey thus far
I am currently at the point of deciding on treatment for my high risk prostate cancer. Here is where things stand thus far:
October 2023:
PSA of 22 discovered at routine physical
November 2023:
PSA score of 25.6 upon retest by urologist
December 2023:
TRUS Biopsy. Cancer in
I am currently at the point of deciding on treatment for my high risk prostate cancer. Here is where things stand thus far:
October 2023:
PSA of 22 discovered at routine physical
November 2023:
PSA score of 25.6 upon retest by urologist
December 2023:
TRUS Biopsy. Cancer in
CavScout
in
Advanced Prostate Cancer
7 months ago
Spider Nevis, does anyone else have these?
Short story, hospitalised over a year ago with jaundice and ascites due to alcoholism, considered de compensated cirrhosis, original fibro scan read 22.2kpa, now it’s 9 and I’m considered to have fibrosis and not cirrhosis although my liver is obviously scarred and my doctor is quite honest when he said
Short story, hospitalised over a year ago with jaundice and ascites due to alcoholism, considered de compensated cirrhosis, original fibro scan read 22.2kpa, now it’s 9 and I’m considered to have fibrosis and not cirrhosis although my liver is obviously scarred and my doctor is quite honest when he said
Grassroots112
in
British Liver Trust
7 months ago
Lopressor
Persistent Permanent Afib. Any alternative to Lopressor??? Titrating to control heart rate 100mgm twice a day too much which is my Cardiologists goal 100mgm in am and 50mgm in pm too much. 50 in am and 50 in pm not enough. Was fine on 25/25 but that was when I was in NSR after cardioversion for
Persistent Permanent Afib. Any alternative to Lopressor??? Titrating to control heart rate 100mgm twice a day too much which is my Cardiologists goal 100mgm in am and 50mgm in pm too much. 50 in am and 50 in pm not enough. Was fine on 25/25 but that was when I was in NSR after cardioversion for
farewelltoarms
in
Atrial Fibrillation Support
4 months ago
Rheumatoid arthritis
Hi I'm on prednisone and leflunomide vid d and jyseleca I have come up with a high temp and a fever, please tell me can I take any pain killers my body is killing me
Hi I'm on prednisone and leflunomide vid d and jyseleca I have come up with a high temp and a fever, please tell me can I take any pain killers my body is killing me
Alisa123
in
NRAS
5 months ago
How maternal lupus affects the child
All moms, please fill out this survey. It won't take long and you'll be the part of a research aimed at determining how maternal lupus may be related to the development of allergies in the child.Your help will be very appreciated. Thank you! ☺ https://forms.gle/kRVd79WSpzA6Gf3n9
All moms, please fill out this survey. It won't take long and you'll be the part of a research aimed at determining how maternal lupus may be related to the development of allergies in the child.Your help will be very appreciated. Thank you! ☺ https://forms.gle/kRVd79WSpzA6Gf3n9
gabriele_klim
in
LUPUS UK
5 months ago
Is it harmful if you have an autoimmune disease and take Low Dose Naltrexone (LDN) twice a day?
Is it harmful if you have an autoimmune disease and take Low Dose Naltrexone (LDN) twice a day? Answered by Michelle Kilmer Moser RPh https://youtu.be/Wtr69oDmM7Q
Is it harmful if you have an autoimmune disease and take Low Dose Naltrexone (LDN) twice a day? Answered by Michelle Kilmer Moser RPh https://youtu.be/Wtr69oDmM7Q
Shewulf
Administrator
in
LDN Research Trust
5 months ago
Answer to unknown question
Jan 2024 (after lots of research and nearly 3 years on from original diagnosis of Metastatic Prostate Cancer with extensive bone metastases) I have just worked out the answer to the question I didn't know I wanted to ask. Instead of worrying about PSA and other test results my real concern was "what
Jan 2024 (after lots of research and nearly 3 years on from original diagnosis of Metastatic Prostate Cancer with extensive bone metastases) I have just worked out the answer to the question I didn't know I wanted to ask. Instead of worrying about PSA and other test results my real concern was "what
Brendan1904
in
Advanced Prostate Cancer
7 months ago
Pain following fibroscan
Hi went for a fibroscan on friday .. the nurse struggled to get reading but kept trying.. diagnosed with liver cirrhosis.. since then i have very bad pain around right side ribs...diarrea .. is this normal.. is it sore ribs or my liver playing up..
Hi went for a fibroscan on friday .. the nurse struggled to get reading but kept trying.. diagnosed with liver cirrhosis.. since then i have very bad pain around right side ribs...diarrea .. is this normal.. is it sore ribs or my liver playing up..
Jender58
in
British Liver Trust
7 months ago
⏰Do you have 15 minutes to spare?⏰
🌟 PARTICIPATE IN A RESEARCH STUDY EXPLORING THE CONNECTIONS BETWEEN PVCS 🫀, MENTAL WELL-BEING 🧠, HEALTH BEHAVIOURS🚶♂️, AND QUALITY OF LIFE! 🌟 🔍 What's Involved? 🔍 Complete two online surveys on Qualtrics. The first is a 15-minute exploration of your PVC journey; the second is a quick 5-minute
🌟 PARTICIPATE IN A RESEARCH STUDY EXPLORING THE CONNECTIONS BETWEEN PVCS 🫀, MENTAL WELL-BEING 🧠, HEALTH BEHAVIOURS🚶♂️, AND QUALITY OF LIFE! 🌟 🔍 What's Involved? 🔍 Complete two online surveys on Qualtrics. The first is a 15-minute exploration of your PVC journey; the second is a quick 5-minute
TracyAdmin
ArrhythmiaAlliance
in
Heart Rhythm Disorders Support
4 months ago
Another experience proving we are all different
I had mentioned in a couple of my answers to posts in the group that I had been episode free for over a year, and suddenly I had two back to back episodes of AF. i didn’t remember doing anything different and in fact did not have any alcohol that day or for several days so not drinking anything can
I had mentioned in a couple of my answers to posts in the group that I had been episode free for over a year, and suddenly I had two back to back episodes of AF. i didn’t remember doing anything different and in fact did not have any alcohol that day or for several days so not drinking anything can
Peacefulneedshelp
in
Atrial Fibrillation Support
4 months ago
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