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Fabry disease
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Progress?
Good morning, not really after any advice just some thoughts from you lovely people. Basically in Oct ‘23 I had a massive variceal bleed, 6l blood transfusion and a 9% survival rate, very jaundice, lost over 3 stone bringing me to just under 6 stone, progonsees liver failure, put on a transplant list
Good morning, not really after any advice just some thoughts from you lovely people. Basically in Oct ‘23 I had a massive variceal bleed, 6l blood transfusion and a 9% survival rate, very jaundice, lost over 3 stone bringing me to just under 6 stone, progonsees liver failure, put on a transplant list
Starlight79
in
British Liver Trust
5 months ago
Feeling sick after HD (advice for my dad)
Hello! My dad (72) has been on HD for two years* now. Lately, he often finds that his blood pressure drops and he feels sick after he's returned home from dialysis, even if he feels okay during treatment. He says the clinic staff watches his BP closely as well as the amount of fluid they're removing
Hello! My dad (72) has been on HD for two years* now. Lately, he often finds that his blood pressure drops and he feels sick after he's returned home from dialysis, even if he feels okay during treatment. He says the clinic staff watches his BP closely as well as the amount of fluid they're removing
Agnes_Fleming
in
Kidney Dialysis
5 months ago
Addissons disease
Good afternoon. I was diagnosed with Adison's disease in 2022. Prescribed Prednisolone 5 mg. Now I take hydrocortisone tablets 20 mg per day. Fludrocortisone 0.1 mg. Once a year there is an Adrinal crisis, I end up in intensive care... Constant weakness, no vitality, I sleep a lot... I am only 43
Good afternoon. I was diagnosed with Adison's disease in 2022. Prescribed Prednisolone 5 mg. Now I take hydrocortisone tablets 20 mg per day. Fludrocortisone 0.1 mg. Once a year there is an Adrinal crisis, I end up in intensive care... Constant weakness, no vitality, I sleep a lot... I am only 43
Mariupol
in
PMRGCAuk
5 months ago
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Addissons disease
Good afternoon. I was diagnosed with Adison's disease in 2022. Prescribed Prednisolone 5 mg. Now I take hydrocortisone tablets 20 mg per day. Fludrocortisone 0.1 mg. Once a year there is an Adrinal crisis, I end up in intensive care... Constant weakness, no vitality, I sleep a lot... I am only 43
Good afternoon. I was diagnosed with Adison's disease in 2022. Prescribed Prednisolone 5 mg. Now I take hydrocortisone tablets 20 mg per day. Fludrocortisone 0.1 mg. Once a year there is an Adrinal crisis, I end up in intensive care... Constant weakness, no vitality, I sleep a lot... I am only 43
Mariupol
in
PMRGCAuk
5 months ago
Final Pluvicto shot and things OK
I just had my 6th, and final, injection. Feeling well but everyone concerned with kidney function dropping -- hopefully transient and not an on-going trend, on the plus side this is the last time it has to deal with all that radioactive liquid. Chugging water and peeing like a champ! To review:
I just had my 6th, and final, injection. Feeling well but everyone concerned with kidney function dropping -- hopefully transient and not an on-going trend, on the plus side this is the last time it has to deal with all that radioactive liquid. Chugging water and peeing like a champ! To review:
Miccoman
in
Advanced Prostate Cancer
5 months ago
what is choline-avid prostate cancer
hi,I was dx in 2014 finished treatment in 2016 ht/rt psa is 0.04 so still ok except I now have severe osteoporosis for which I am having treatment, what I want to ask is does anyone take krill oil to help there joints, I have been reading on canceractive that krill oil is not good for prostate cancer
hi,I was dx in 2014 finished treatment in 2016 ht/rt psa is 0.04 so still ok except I now have severe osteoporosis for which I am having treatment, what I want to ask is does anyone take krill oil to help there joints, I have been reading on canceractive that krill oil is not good for prostate cancer
Radars
in
Advanced Prostate Cancer
5 months ago
Wednesday Word
[u][i]
ALT - Alanine Transaminase
[/i][/u] This is a blood test performed as part of your routine liver panel test. It is released more so by the [u][i]
hepatocytes -(liver cells)
[/i][/u] so it's associated more with hepatitis rather than PBC. ALT can be elevated in both non responders
[u][i]
ALT - Alanine Transaminase
[/i][/u] This is a blood test performed as part of your routine liver panel test. It is released more so by the [u][i]
hepatocytes -(liver cells)
[/i][/u] so it's associated more with hepatitis rather than PBC. ALT can be elevated in both non responders
DonnaBoll
Administrator
in
PBC Foundation
5 months ago
How to control thirst to avoid Fluid overload
Hi Friends My mother is on Maintenance Haemodialysis thrice a week since 4 months. She is now adjusted to this process. As she lives in the tropical country, in the summer season it will be difficult for her to limit the fluid intake. Can any one advice how to control the thirst to limit fluid intake
Hi Friends My mother is on Maintenance Haemodialysis thrice a week since 4 months. She is now adjusted to this process. As she lives in the tropical country, in the summer season it will be difficult for her to limit the fluid intake. Can any one advice how to control the thirst to limit fluid intake
Mentoslfc
in
Dialysis Support
5 months ago
always question
Just this morning there was a post about questioning the legitimacy of a survey about itching - and receiving payment for completing it. Some of you reached out to The PBC Foundation (as did I) to just make sure it was 'for real'. I am just as hopeful that when any of you don't feel the care you receive
Just this morning there was a post about questioning the legitimacy of a survey about itching - and receiving payment for completing it. Some of you reached out to The PBC Foundation (as did I) to just make sure it was 'for real'. I am just as hopeful that when any of you don't feel the care you receive
DonnaBoll
Administrator
in
PBC Foundation
5 months ago
Time to PSA Nadir is related to progression-free-survival
This graph from Teoh (2014) plots the relationship between Time to PSA Nadir (months) versus Time to Progression (months) (i.e., Progression Free Survival). Cohort: ADT monotherapy (No RP or RT), all metastatic patients, median 74 y.o., GS = 8-10, N=419. A cubic spline curve fit matched the data points
This graph from Teoh (2014) plots the relationship between Time to PSA Nadir (months) versus Time to Progression (months) (i.e., Progression Free Survival). Cohort: ADT monotherapy (No RP or RT), all metastatic patients, median 74 y.o., GS = 8-10, N=419. A cubic spline curve fit matched the data points
janebob99
in
Advanced Prostate Cancer
5 months ago
Abiraterone seems to be working
An update on my situation. To review, I now appear to be castrate resistant after about 6 1/2 years of being castrate sensitive. My MO put me on Abiraterone, along the existing Lupron. I had my MO appt and my PSA has fallen from 4.5 to 2 after about 7 weeks on Abi. This is my second iteration with Abi
An update on my situation. To review, I now appear to be castrate resistant after about 6 1/2 years of being castrate sensitive. My MO put me on Abiraterone, along the existing Lupron. I had my MO appt and my PSA has fallen from 4.5 to 2 after about 7 weeks on Abi. This is my second iteration with Abi
fireandice123
in
Advanced Prostate Cancer
5 months ago
Cortisol test
Result of morning cortisal test was 131 which is rubbish (range 102-535) and explains why I feel exhausted some days. Have been on 3mg for several weeks. Looks like it’s a Synacthen test next. Thanks PMRpro for the info on that. Is the experience ok anyone out there who’s had one?
Result of morning cortisal test was 131 which is rubbish (range 102-535) and explains why I feel exhausted some days. Have been on 3mg for several weeks. Looks like it’s a Synacthen test next. Thanks PMRpro for the info on that. Is the experience ok anyone out there who’s had one?
Bluey-1
in
PMRGCAuk
5 months ago
PSA showing .014 - concerned?
I had RP 3/22, PSA went up to .095 3 months after. I started Orgovyx on 8/15/22 had radiation Jan & Feb 23 and started Abi 4/23. All my psa's have been 0 since 10/22. Now it is at .014. I see my oncologist next Tuesday but I don't want to wait for his answer. How bad of a sign is this? I'm guessing
I had RP 3/22, PSA went up to .095 3 months after. I started Orgovyx on 8/15/22 had radiation Jan & Feb 23 and started Abi 4/23. All my psa's have been 0 since 10/22. Now it is at .014. I see my oncologist next Tuesday but I don't want to wait for his answer. How bad of a sign is this? I'm guessing
VanHalen84
in
Advanced Prostate Cancer
5 months ago
Nicotine patches vs gum.
if you’re not aware, I’ve been experimenting with the nicotine patch. I found that it’s too much. I wonder if that why the trial failed. I found a couple pieces of gum, 3-4 a day as needed better. I will soon be off meds. They never really worked that good anyway. Nicotine works just as good if not
if you’re not aware, I’ve been experimenting with the nicotine patch. I found that it’s too much. I wonder if that why the trial failed. I found a couple pieces of gum, 3-4 a day as needed better. I will soon be off meds. They never really worked that good anyway. Nicotine works just as good if not
38yroldmale
in
Cure Parkinson's
5 months ago
help with thyroid pain
hello I have realy sensitive and painful thyroid , my y throat hurts to touch and even when I walk and breath in vibrations hurt it , I get realy week legs and feel like my blood pressure is dropping feel awful have this feeling all the time , but throat lasts for ages comes and goes ? Effects my stomach
hello I have realy sensitive and painful thyroid , my y throat hurts to touch and even when I walk and breath in vibrations hurt it , I get realy week legs and feel like my blood pressure is dropping feel awful have this feeling all the time , but throat lasts for ages comes and goes ? Effects my stomach
Prosecco1997
in
Thyroid UK
5 months ago
Is it just me?
Wondering if anyone else isn't sold on the concept of taking a sledgehammer to the immune system to treat RRMS. I am looking forward to these meds finishing clinical trials: * Vidofludimus calcium [It's both anti-EBV and neuroprotective effect] (Link: https://multiplesclerosisnewstoday.com
Wondering if anyone else isn't sold on the concept of taking a sledgehammer to the immune system to treat RRMS. I am looking forward to these meds finishing clinical trials: * Vidofludimus calcium [It's both anti-EBV and neuroprotective effect] (Link: https://multiplesclerosisnewstoday.com
By-Design-1000
in
My MSAA Community
5 months ago
b12 liver stores
Hi everyone, Just a quick question for those of us with PA. When we have b12 loading doses I have read this replenishes liver stores. Can anyone tell me does this b12 always successfully make it into the liver stores? I ask because my body does not reflect this. Loading doses did nothing to alleaviate
Hi everyone, Just a quick question for those of us with PA. When we have b12 loading doses I have read this replenishes liver stores. Can anyone tell me does this b12 always successfully make it into the liver stores? I ask because my body does not reflect this. Loading doses did nothing to alleaviate
brenanddave
in
Pernicious Anaemia Society
5 months ago
Ultrasound/Biopsy show cirrhosis, but fibroscan score is 7.4
I’m somewhat perplexed… since my diagnosis I’ve been told I have cirrhosis, because of my biopsy and ultrasound results. A recent fibroscan score was 7.4, which is fibrosis. Although some parts of the fibroscan were as high as 8. Can someone explain this? My dr. was very vague in his explanation. Thank
I’m somewhat perplexed… since my diagnosis I’ve been told I have cirrhosis, because of my biopsy and ultrasound results. A recent fibroscan score was 7.4, which is fibrosis. Although some parts of the fibroscan were as high as 8. Can someone explain this? My dr. was very vague in his explanation. Thank
Danteskid
in
PBC Foundation
5 months ago
My girlfriend
My girlfriend had a tbi last July which she had a subdural hematoma and a subarachnoid hemorrhage after a bicycle accident and she making great progress with out the help of specialists because of the government health care insurance. I was just wondering if anyone had some tips that could help with
My girlfriend had a tbi last July which she had a subdural hematoma and a subarachnoid hemorrhage after a bicycle accident and she making great progress with out the help of specialists because of the government health care insurance. I was just wondering if anyone had some tips that could help with
bbaker84_
in
Headway
5 months ago
Magnesium as ozonated magnesium oxides
Hello again. Slow Dragon said that there needs to be 4 hours after T4 or T3 before taking Magnesium. I take magnesium from ozonated magnesium oxides with 3% potassium before bed to help with any constipation that still lingers a little. I asked the company about their product and they said they don't
Hello again. Slow Dragon said that there needs to be 4 hours after T4 or T3 before taking Magnesium. I take magnesium from ozonated magnesium oxides with 3% potassium before bed to help with any constipation that still lingers a little. I asked the company about their product and they said they don't
Lottyplum
in
Thyroid UK
5 months ago
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