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Amyotrophic lateral sclerosis (ALS)
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another pharma update
This is in regards to the pharma Ipsen... They are trialing a drug called Elafibranor. It is being used for treatment in PBC, biliary atresia (in children) , PSC, Alagille Syndrome, and Primary Familial Cholestasis. With patients taking Urso, often up to 40% do not see improvement. 3-5% of patients
This is in regards to the pharma Ipsen... They are trialing a drug called Elafibranor. It is being used for treatment in PBC, biliary atresia (in children) , PSC, Alagille Syndrome, and Primary Familial Cholestasis. With patients taking Urso, often up to 40% do not see improvement. 3-5% of patients
DonnaBoll
Administrator
in
PBC Foundation
4 days ago
milk thistle
has anyone taken milk thistle and alk phos or lft improve? are they any vitamins or supplements that have have been known to help PBC test results? thanks!
has anyone taken milk thistle and alk phos or lft improve? are they any vitamins or supplements that have have been known to help PBC test results? thanks!
Samanthaann
in
PBC Foundation
5 days ago
Seladelpar update
About a month or more ago, I wrote about this upcoming drug's potentially to be the next drug for second line treatment. By that I mean that for some reason someone was not responding to or not able to take Urso. 40% of patients are failed by Urso. Cymabay, the pharma who manufacturers Seladelpar,
About a month or more ago, I wrote about this upcoming drug's potentially to be the next drug for second line treatment. By that I mean that for some reason someone was not responding to or not able to take Urso. 40% of patients are failed by Urso. Cymabay, the pharma who manufacturers Seladelpar,
DonnaBoll
Administrator
in
PBC Foundation
8 days ago
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Perplexed over lab work
Hello, I am a 32 y/o white female. Some history about me that may be applicable: Surgeries: Gallbladder removed (2011), Gastric Sleeve (2017) Weight loss surgery: Started at 332lbs, currently fluctuate between 178-185. Diagnoses: Major Depressive Disorder, GERD (resulting from WLS), ADHD, Anemia
Hello, I am a 32 y/o white female. Some history about me that may be applicable: Surgeries: Gallbladder removed (2011), Gastric Sleeve (2017) Weight loss surgery: Started at 332lbs, currently fluctuate between 178-185. Diagnoses: Major Depressive Disorder, GERD (resulting from WLS), ADHD, Anemia
aybaylay
in
Pernicious Anaemia Society
18 days ago
Good report
Had my every 6 month check up with the hepatologist today. Labs were all good. My alk phos is 121 - normal range for my lab is 37-153. Kidney function good as well.. always make sure part of your regular lab work is a comprehensive metabolic profile (CMP). Now just to make myself committed to making
Had my every 6 month check up with the hepatologist today. Labs were all good. My alk phos is 121 - normal range for my lab is 37-153. Kidney function good as well.. always make sure part of your regular lab work is a comprehensive metabolic profile (CMP). Now just to make myself committed to making
DonnaBoll
Administrator
in
PBC Foundation
1 month ago
Curious about PBC symptoms and LFTs at Diagnosis
Hello Everyone, I am new to the group and I was recently diagnosed with PBC and I was wondering if anyone could share what symptoms they might have been experiencing when they first were diagnosed with PBC. I know from doing some research, that "intense" itching is mentioned as well as elevated LFTs
Hello Everyone, I am new to the group and I was recently diagnosed with PBC and I was wondering if anyone could share what symptoms they might have been experiencing when they first were diagnosed with PBC. I know from doing some research, that "intense" itching is mentioned as well as elevated LFTs
Toddyboo
in
PBCers Organization
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
2 months ago
Effects of coenzyme Q10 in early Parkinson disease: evidence of slowing of the functional decline
“Mitochondria and the Future of Medicine” a chapter on mitochondrial involvement in neurodegeneration provides evidence that statins may be causal in many serious diseases such as
ALS
/MND, Parkinson’s Disease, Alzheimer’s disease, MS, etc.
“Mitochondria and the Future of Medicine” a chapter on mitochondrial involvement in neurodegeneration provides evidence that statins may be causal in many serious diseases such as
ALS
/MND, Parkinson’s Disease, Alzheimer’s disease, MS, etc.
SilentEchoes
in
Cure Parkinson's
7 months ago
Pluvicto still working well
Am coming to my fifth injection and I see I neglected to post my results after #3 & #4 so they are here, too. So far: Aug 16: PSA
99.7
Aug 21: Pluvicto
#1
Sep 11: PSA
106
Sep 28: PSA
91.8
Oct 05: Pluvicto
#2
Oct 25: PSA
57.8
Nov
Am coming to my fifth injection and I see I neglected to post my results after #3 & #4 so they are here, too. So far: Aug 16: PSA
99.7
Aug 21: Pluvicto
#1
Sep 11: PSA
106
Sep 28: PSA
91.8
Oct 05: Pluvicto
#2
Oct 25: PSA
57.8
Nov
Miccoman
in
Advanced Prostate Cancer
3 months ago
SUCCESS with replacing diseased brain cells with healthy ones!
This breakthrough suggests a broad potential for the [u][i]
treatment of neurodegenerative diseases
[/i][/u], such as Huntington’s disease,
ALS
, and some genetic schizophrenia." “Things are fairly far along.
This breakthrough suggests a broad potential for the [u][i]
treatment of neurodegenerative diseases
[/i][/u], such as Huntington’s disease,
ALS
, and some genetic schizophrenia." “Things are fairly far along.
PDWarrior1900
in
Cure Parkinson's
9 months ago
Someone finally said the quiet part out loud.
As if
ALS
wasn't bad enough, I'm in kidney failure and a cancer dx is imminent. I'm being forced to run the same gauntlet as my neurological injury. Doctors refuse to test and if they do, they deny their findings.
As if
ALS
wasn't bad enough, I'm in kidney failure and a cancer dx is imminent. I'm being forced to run the same gauntlet as my neurological injury. Doctors refuse to test and if they do, they deny their findings.
SilentEchoes
in
Cure Parkinson's
4 months ago
Alk phos on Xeloda
Moms just started her 3 cycle today of xeloda. So she’s been on it 6 weeks. Her T bili is normal her ast and alt are normal . But her Alk phos is up. Her doctor said they would continue to monitor it. Anyone else have this elevate on Xeloda ? Thanks so much!
Moms just started her 3 cycle today of xeloda. So she’s been on it 6 weeks. Her T bili is normal her ast and alt are normal . But her Alk phos is up. Her doctor said they would continue to monitor it. Anyone else have this elevate on Xeloda ? Thanks so much!
Flower1513
in
SHARE Metastatic Breast Cancer
4 months ago
COVID survivors may be at a greater risk of developing Parkinson’s–like symptoms, researchers warn. What to know to protect your health
[u]
However grim the findings, the team’s study resulted in some positive news:
drug riluzole, diabetes drug metformin, and cancer drug imatinib appear to prevent the aforementioned type of neurons from becoming infected with COVID and, thus, losing their ability to function properly[/u]."
[u]
However grim the findings, the team’s study resulted in some positive news:
drug riluzole, diabetes drug metformin, and cancer drug imatinib appear to prevent the aforementioned type of neurons from becoming infected with COVID and, thus, losing their ability to function properly[/u]."
Bolt_Upright
in
Cure Parkinson's
3 months ago
Trying TUDCA again
I am sure TUDCA has been discussed before, however I have been reading over the studies for
ALS
and other neurological disorders again. WIth the help of ChatGPT, I am able to have things explained easier than ever before.
I am sure TUDCA has been discussed before, however I have been reading over the studies for
ALS
and other neurological disorders again. WIth the help of ChatGPT, I am able to have things explained easier than ever before.
bluejadedwho
in
AMN EASIER
7 months ago
Misdiagnosed with ALS
Last year, I was diagnosed with
ALS
. I went to Mayo for a second opinion and it was determined I do not have
ALS
. The doctor stated I have tremors from anxiety and possible drug prescriptions. I followed up with my doctor upon my return home and we do not feel it is prescription related.
Last year, I was diagnosed with
ALS
. I went to Mayo for a second opinion and it was determined I do not have
ALS
. The doctor stated I have tremors from anxiety and possible drug prescriptions. I followed up with my doctor upon my return home and we do not feel it is prescription related.
Hidden
in
Anxiety and Depression Support
1 year ago
My 10 year Anniversary is coming up on 7/16/2014. I'm not doing well.
I outlived my
ALS
prognosis of 3-5 years. My
ALS
progression has been slow - but poisons aren't selective and my kidneys have been damaged. I've been hospitalized at least 13 times in the last year and I have lost the function of my right kidney - it will be removed in June.
I outlived my
ALS
prognosis of 3-5 years. My
ALS
progression has been slow - but poisons aren't selective and my kidneys have been damaged. I've been hospitalized at least 13 times in the last year and I have lost the function of my right kidney - it will be removed in June.
SilentEchoes
in
Cure Parkinson's
27 days ago
sueky
Does this sound like a DILI? History of erythromycin use sine Christmas 2022 to control rosacea but altho a GP herself my daughter didnt follow the rules and stopped and started, also increasing and decreasing dose acc to how bad her rosacea was. On June 30th 2023 half an hour after going to bed absolutely
Does this sound like a DILI? History of erythromycin use sine Christmas 2022 to control rosacea but altho a GP herself my daughter didnt follow the rules and stopped and started, also increasing and decreasing dose acc to how bad her rosacea was. On June 30th 2023 half an hour after going to bed absolutely
suekaty
in
British Liver Trust
5 months ago
My response to WinnieThePoo.
I wrote this specifically for
ALS
on another forum - glutamate excitotoxicity is not exclusive to
ALS
. A growing list of neurologic disorders are now understood to share a final common destructive metabolic pathway called
excitotoxicity
.
I wrote this specifically for
ALS
on another forum - glutamate excitotoxicity is not exclusive to
ALS
. A growing list of neurologic disorders are now understood to share a final common destructive metabolic pathway called
excitotoxicity
.
SilentEchoes
in
Cure Parkinson's
7 months ago
update
hello everyone hope you’re all keeping as well as possible, I’ve had a blood test on the 22/ feb with nhs no thyroid’s done They were done as medichecks test for cpr was very high I would like to add a little more t3 as it’s not very high at the moment and feel as I need a good. Boost , to get
hello everyone hope you’re all keeping as well as possible, I’ve had a blood test on the 22/ feb with nhs no thyroid’s done They were done as medichecks test for cpr was very high I would like to add a little more t3 as it’s not very high at the moment and feel as I need a good. Boost , to get
Kowbie
in
Thyroid UK
2 months ago
all phos
hi, my alk phos started last year at 152. Went on urso and 6 months later it dropped to 118. Today whic is 6 month later alk went back up to 146. Have not discussed with doctor yet. Has anyone else experienced the fluctuation? Thank you
hi, my alk phos started last year at 152. Went on urso and 6 months later it dropped to 118. Today whic is 6 month later alk went back up to 146. Have not discussed with doctor yet. Has anyone else experienced the fluctuation? Thank you
Samanthaann
in
PBC Foundation
6 months ago
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