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Just checking in...
How is everyone doing lately with their PBC? For some of us, the temps are cooler - maybe helping with less itching. Do you feel you are still living life as best you can despite any of the symptoms that may occur unexpectedly in your day? We all have PBC so differently, don't we? I hope you all try
How is everyone doing lately with their PBC? For some of us, the temps are cooler - maybe helping with less itching. Do you feel you are still living life as best you can despite any of the symptoms that may occur unexpectedly in your day? We all have PBC so differently, don't we? I hope you all try
DonnaBoll
Administrator
in
PBC Foundation
3 days ago
Got results today
Labs weren’t too bad, but will be curious to see what they say. Wbcs 1.9, hct 39.5, PLT 176, neutrophils 1.1, lymphocytes 0.6. Alk phos was a little high, but not near double, other liver enzymes were good. I figured it is because my thyroid needs adjusting as it was totally fine in June. But lipids
Labs weren’t too bad, but will be curious to see what they say. Wbcs 1.9, hct 39.5, PLT 176, neutrophils 1.1, lymphocytes 0.6. Alk phos was a little high, but not near double, other liver enzymes were good. I figured it is because my thyroid needs adjusting as it was totally fine in June. But lipids
KLCTJC
in
MPN Voice
1 month ago
Tuesday's Tip
[i]
For the most part physicians have given Urso up to a year to decide if you are a responder or not -- has the Urso decreased your numbers significantly in that time period.
[/i] [i]
According to Dr. Jones (world 's leading expert on PBC) the thinking may soon be that only a 6 month period
[i]
For the most part physicians have given Urso up to a year to decide if you are a responder or not -- has the Urso decreased your numbers significantly in that time period.
[/i] [i]
According to Dr. Jones (world 's leading expert on PBC) the thinking may soon be that only a 6 month period
DonnaBoll
Administrator
in
PBC Foundation
1 month ago
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Why would my Alk Phos go up after just starting urso?
Hi All, I have a question and wondered if anyone had an answer to if they had a similar experience. I just started taking Urso and have been on it now close to a month my recent blood work shows that my Alk Phos has increased rather than decreased. While I know it may take awhile for Urso to potentially
Hi All, I have a question and wondered if anyone had an answer to if they had a similar experience. I just started taking Urso and have been on it now close to a month my recent blood work shows that my Alk Phos has increased rather than decreased. While I know it may take awhile for Urso to potentially
Toddyboo
in
PBC Foundation
5 months ago
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
5 months 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 months 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
5 months 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
6 months 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
7 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
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
7 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
9 months ago
Wednesday's Word
[u][i]
"upper limits of normal"
[/i][/u] When we have any blood work done, there is always a 'normal' range given with our results. Hospitals or labs can somethings differ as to what their 'normal' is. Always look at what your results are according to that normal. According to Dr. Jones, in
[u][i]
"upper limits of normal"
[/i][/u] When we have any blood work done, there is always a 'normal' range given with our results. Hospitals or labs can somethings differ as to what their 'normal' is. Always look at what your results are according to that normal. According to Dr. Jones, in
DonnaBoll
Administrator
in
PBC Foundation
8 days ago
Wednesday's Word
[u][i]
Urso responder........
[/i][/u] Right now the criteria used is that the patients' alkaline phosphatase result is LESS than 1.67 times the upper limits of normal and the bilirubin results are less than one time the upper limits of normal. I know this can be very confusing. This is why
[u][i]
Urso responder........
[/i][/u] Right now the criteria used is that the patients' alkaline phosphatase result is LESS than 1.67 times the upper limits of normal and the bilirubin results are less than one time the upper limits of normal. I know this can be very confusing. This is why
DonnaBoll
Administrator
in
PBC Foundation
4 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
11 months ago
Has methotrexate caused liver damage
I had a blood
test
which showed raised levels of
ALP
136, Aspartate Transaminase 68. My GP said that my RA meds have caused damage to my liver!!! I am having a liver fibroscan tommorrow to check for fatty liver. Very anxious but will need to take it one step at a time.
I had a blood
test
which showed raised levels of
ALP
136, Aspartate Transaminase 68. My GP said that my RA meds have caused damage to my liver!!! I am having a liver fibroscan tommorrow to check for fatty liver. Very anxious but will need to take it one step at a time.
Beanyynwa
in
NRAS
6 months ago
Complicated with NASH, looking for next step
HI, I feel so discouraged by healthcare. My story - No one can say "why," yet I appear to have fast advancing liver disease. I do have several autoimmune ds ie Hashimotos, Fibromyalgia, adrenal issue etc - but so far tested neg related to liver, no hepatitis etc but am + EBV w/o mono, No diabetes A1c
HI, I feel so discouraged by healthcare. My story - No one can say "why," yet I appear to have fast advancing liver disease. I do have several autoimmune ds ie Hashimotos, Fibromyalgia, adrenal issue etc - but so far tested neg related to liver, no hepatitis etc but am + EBV w/o mono, No diabetes A1c
NeverBeen2Spain
in
Living with Fatty Liver and NASH
1 year ago
Prayers still needed for our HU Brother Kevin🙏
He's 5 chemos in and PSA still rising. If you are so inclined, a Prayer for him would be so welcomed🙏💙 Alk Phos is normal, severely anemic tho😟 Mahalo nui loa 🤙 Fight on Y'all
He's 5 chemos in and PSA still rising. If you are so inclined, a Prayer for him would be so welcomed🙏💙 Alk Phos is normal, severely anemic tho😟 Mahalo nui loa 🤙 Fight on Y'all
dockam
in
Advanced Prostate Cancer
1 year 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
10 months ago
Mild concentric LVH
I have shown Mild concentric LVH, bp 140/100, cholesterol 256, triglycerides 320, SGOT 93, SGPT 102. Please suggest me , what should i do, what food to eat, daily routine, exercise, how to recover from it.
I have shown Mild concentric LVH, bp 140/100, cholesterol 256, triglycerides 320, SGOT 93, SGPT 102. Please suggest me , what should i do, what food to eat, daily routine, exercise, how to recover from it.
Parbat_64
in
British Heart Foundation
9 months ago
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