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Gaucher disease type 3 (GD3)
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Life Expectancy
My father was diagnosed with advanced prostate cancer four years ago. Initially, he underwent radiation for a few spots on his ribs and immediately began ADT/Xtandi treatment for two years. His PSA dropped to 0.001, prompting his medical oncologist to recommend a medication vacation. For two years, he
My father was diagnosed with advanced prostate cancer four years ago. Initially, he underwent radiation for a few spots on his ribs and immediately began ADT/Xtandi treatment for two years. His PSA dropped to 0.001, prompting his medical oncologist to recommend a medication vacation. For two years, he
godhelpus
in
Advanced Prostate Cancer
6 months ago
Thyroid antibodies
Hello everyone, Just asking for some advice or thoughts as I have the thyroid antibodies but ‘normal thyroid’. The thyroid antibodies were found when my first private endo ran tests for my hypoPARA. I have been confused about what they are going to do about it as all they have said it ‘your thyroid
Hello everyone, Just asking for some advice or thoughts as I have the thyroid antibodies but ‘normal thyroid’. The thyroid antibodies were found when my first private endo ran tests for my hypoPARA. I have been confused about what they are going to do about it as all they have said it ‘your thyroid
Owl84
in
Thyroid UK
2 months ago
drug vacation
Who had PSA level come back all the way down after a drug vacation? I want to do a holiday when my Lupron wears off in a couple months. PSA now is .053. Been on Lupron and abi for six years.
Who had PSA level come back all the way down after a drug vacation? I want to do a holiday when my Lupron wears off in a couple months. PSA now is .053. Been on Lupron and abi for six years.
gsun
in
Advanced Prostate Cancer
6 months ago
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I think I have Lupus but not diagnosed yet
hello everyone. I have always been a really active person. I consider myself athletic and constantly keep myself busy. But have been struggling with fatigue for a few years and put this down to IBS and getting older (late 30’s) but despite my IBS being well controlled now, recently my symptoms have
hello everyone. I have always been a really active person. I consider myself athletic and constantly keep myself busy. But have been struggling with fatigue for a few years and put this down to IBS and getting older (late 30’s) but despite my IBS being well controlled now, recently my symptoms have
Zephyrspurple
in
LUPUS UK
2 months ago
PSORIATIC ARTHRITIS
I supposedly have psoriatic arthritis/tendinopathy however there is no evidence in my blood. My tendons attaching to elbows and feet become extremely painful. I was put on MTX 15ml injections for 8 months but stopped as my blood cells were slightly enlarged and the jury is out if it was even working
I supposedly have psoriatic arthritis/tendinopathy however there is no evidence in my blood. My tendons attaching to elbows and feet become extremely painful. I was put on MTX 15ml injections for 8 months but stopped as my blood cells were slightly enlarged and the jury is out if it was even working
Cheylann
in
NRAS
2 months ago
Liver Results - Noone can tell me whats normal
Hi All, I'm generally very healthy (lots of exercise) although since I was approx 23 (I'm now 57) my GGT levels have been elevated to between 58-88. This concerned me a little (didn't really concern my Doc) although my ALT's & AST's have always been within normal range. I do drink quite a bit...but
Hi All, I'm generally very healthy (lots of exercise) although since I was approx 23 (I'm now 57) my GGT levels have been elevated to between 58-88. This concerned me a little (didn't really concern my Doc) although my ALT's & AST's have always been within normal range. I do drink quite a bit...but
BouncyCat
in
British Liver Trust
6 months ago
PSA flare Post SBRT
Does anyone know how long PSA ca flare after SBRT? Thanks
Does anyone know how long PSA ca flare after SBRT? Thanks
NDJIM
in
Advanced Prostate Cancer
6 months ago
Help with short synacthen test results
I originally posted this on the thyroid section of this site, but there appears to be some good experience of the short synacthen test here too, so I hope this is ok. Quick background, I’m 38 years old, male, and been experiencing pretty debilitating symptoms for about 6 years - fatigue, brain fog,
I originally posted this on the thyroid section of this site, but there appears to be some good experience of the short synacthen test here too, so I hope this is ok. Quick background, I’m 38 years old, male, and been experiencing pretty debilitating symptoms for about 6 years - fatigue, brain fog,
JonnyA
in
PMRGCAuk
6 months ago
A Phase 1, Open-Label, Multicenter Study of JANX007 in Subjects With Metastatic Castration-Resistant Prostate Cancer
I have a choice between this trial and a BAT trial. I’m already preferential to BAT, but without being too hasty, I wanted to see if anyone here has any experience with JANX00x before deciding.
I have a choice between this trial and a BAT trial. I’m already preferential to BAT, but without being too hasty, I wanted to see if anyone here has any experience with JANX00x before deciding.
No_stone_unturned
in
Advanced Prostate Cancer
6 months ago
Help understanding short synacthen test result
First and foremost, apologies if I’m posting this in the wrong place, but I’ve seen other helpful reasons on this forum about short synacthen tests for adrenal insufficiency, and thought it worth a shot. Quick background, I’m 38 years old, male, and been experiencing pretty debilitating symptoms for
First and foremost, apologies if I’m posting this in the wrong place, but I’ve seen other helpful reasons on this forum about short synacthen tests for adrenal insufficiency, and thought it worth a shot. Quick background, I’m 38 years old, male, and been experiencing pretty debilitating symptoms for
JonnyA
in
Thyroid UK
6 months ago
Metaxalone.
I was diagnosed with PMR September 2023 but I'm unable to have steroids. Due to a heart condition I'm also unable to have Immuno suppresants. My Rheumy has now prescribed Metaxalone for pain relief. Reading the side effects I'm not sure I'm happy to take them as they can affect your kidneys and liver
I was diagnosed with PMR September 2023 but I'm unable to have steroids. Due to a heart condition I'm also unable to have Immuno suppresants. My Rheumy has now prescribed Metaxalone for pain relief. Reading the side effects I'm not sure I'm happy to take them as they can affect your kidneys and liver
Joann63
in
PMRGCAuk
6 months ago
How long does a coeliacs blood test take to come back?
Exactly that! I had bloods done on Friday lunch time, including a FBC, B12, folate, and ferritin. Also Coeliac screen (TTG). All the others are back but not the coeliac screen yet. Is that usual?
Exactly that! I had bloods done on Friday lunch time, including a FBC, B12, folate, and ferritin. Also Coeliac screen (TTG). All the others are back but not the coeliac screen yet. Is that usual?
WitchingHour2point0
in
Thyroid UK
2 months ago
New Diagnosis of PBC and Prescribed URSO
Hello Everyone, I recently was diagnosed with PBC and went to see a GI doctor who recommended I start taking URSO. My bloodwork shows an elevated alk phos level (over time), positive AMA, GGT, DSDNA and I also was recently diagnosed last year with an MPN (myeloproliferative neoplasm) called essential
Hello Everyone, I recently was diagnosed with PBC and went to see a GI doctor who recommended I start taking URSO. My bloodwork shows an elevated alk phos level (over time), positive AMA, GGT, DSDNA and I also was recently diagnosed last year with an MPN (myeloproliferative neoplasm) called essential
Toddyboo
in
PBC Foundation
6 months ago
PSA not dropping with cabazitaxel
See my profile for history. Have had 8 good years after Docitaxal, Lupron and 4 years of Zytiga. But mets's started up again in May, 2023. PSA went up to 36. Took 5 rounds of Docitaxal but not working. PSA 46 in December. MO prognosis is 1-1.5 yrs. Switched to cabazitaxel but after 3 rounds PSA is now
See my profile for history. Have had 8 good years after Docitaxal, Lupron and 4 years of Zytiga. But mets's started up again in May, 2023. PSA went up to 36. Took 5 rounds of Docitaxal but not working. PSA 46 in December. MO prognosis is 1-1.5 yrs. Switched to cabazitaxel but after 3 rounds PSA is now
westjl2
in
Advanced Prostate Cancer
6 months ago
Breakthrough with the cause of IBD - may lead to similar discoveries with other autoimmune diseases?
Just spotted this on my BBC News notifications. BBC News - Major cause of inflammatory bowel disease found https://www.bbc.com/news/articles/c1wwdd6v2wjo It's written in layman's language, but seems to say they have found that there is a genetic link and that they have drugs already that might treat
Just spotted this on my BBC News notifications. BBC News - Major cause of inflammatory bowel disease found https://www.bbc.com/news/articles/c1wwdd6v2wjo It's written in layman's language, but seems to say they have found that there is a genetic link and that they have drugs already that might treat
Broseley
in
PMRGCAuk
2 months ago
urea blood test low
hi has anyone ever experienced this my Liver tests were normal this time round alt being 28 however my urea said 2.0 and it said that the normal is between 2.5 and 7.0 thanks in advance x
hi has anyone ever experienced this my Liver tests were normal this time round alt being 28 however my urea said 2.0 and it said that the normal is between 2.5 and 7.0 thanks in advance x
Faye-red
in
British Liver Trust
6 months ago
Northern Ireland Lupus Group and LUPUS UK Virtual Volunteering Event - 26th June 7pm!
Do you live in Northern Ireland and want to get involved in volunteering? The Northern Ireland Lupus Group and LUPUS UK National Office are hosting an online volunteer information event on Wednesday 26th June, from 7pm until 9pm. This is a brilliant opportunity to learn about the charity and the many
Do you live in Northern Ireland and want to get involved in volunteering? The Northern Ireland Lupus Group and LUPUS UK National Office are hosting an online volunteer information event on Wednesday 26th June, from 7pm until 9pm. This is a brilliant opportunity to learn about the charity and the many
michaellasmith
Administrator
in
LUPUS UK
2 months ago
Diagnosed almost 3 years ago
I am a 70 year old diagnosed in 8/21 with G9 on biopsy with initial imaging negative for metastatic disease. Underwent RP in 10/21 with seminal vesicle involvement. A few sampled nodes were negative. 5 months after surgery PSA climbed to 0.39 from 0.016 in first post op test. PSMA PET revealed a solitary
I am a 70 year old diagnosed in 8/21 with G9 on biopsy with initial imaging negative for metastatic disease. Underwent RP in 10/21 with seminal vesicle involvement. A few sampled nodes were negative. 5 months after surgery PSA climbed to 0.39 from 0.016 in first post op test. PSMA PET revealed a solitary
Retireddoc
in
Advanced Prostate Cancer
6 months ago
Fib-4 score 0.66
Hello Everyone, please advise if fib-4 score is same as fibro scan score. Mine is 0.66 or 1 32. I am worried sick about it. It says the score is intermediate. I think I have terry nails, itching and dull pain. Is this mean that I have advanced cirrhosis? My blood test are normal.
Hello Everyone, please advise if fib-4 score is same as fibro scan score. Mine is 0.66 or 1 32. I am worried sick about it. It says the score is intermediate. I think I have terry nails, itching and dull pain. Is this mean that I have advanced cirrhosis? My blood test are normal.
SShally
in
British Liver Trust
6 months ago
Investigational MS Med Nearly Eliminates Disease Activity on MRI
NASHVILLE, TENNESSEE — A second-generation anti-CD40L monoclonal antibody suppresses multiple sclerosis (MS) disease activity on MRI to an uncommonly high degree, new trial data suggested.
https://www.mdedge.com/neurology/article/269463/multiple-sclerosis/investigational-ms-med-nearly-eliminates-disease
NASHVILLE, TENNESSEE — A second-generation anti-CD40L monoclonal antibody suppresses multiple sclerosis (MS) disease activity on MRI to an uncommonly high degree, new trial data suggested.
https://www.mdedge.com/neurology/article/269463/multiple-sclerosis/investigational-ms-med-nearly-eliminates-disease
BettysMom
in
My MSAA Community
2 months ago
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