AIH and PBC in the family ?

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jft
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Date Joined Oct 2009
Total Posts : 47
   Posted 10/3/2009 6:23 AM (GMT -7)   
I have a decease, I have AIH and PBC....well that quit right...my wife has theese deceases.
There I have it too, so Im here to learn all what I can about AIH and PBC.
Right now "we" are on Entocord for the AIH, 4 weeks, and Ursofalk for the PBC, since February.
Right now there a lot of bloodtest to see if thne livernumber goes down.
We are thinking, reading, hearing from all sources, so if anone could tell what we have to expect, I would be very glad.


Regards from Denmark
 
Whats under the sky is natural.
Whats over...................is flying.

Post Edited (jft) : 10/4/2009 2:58:11 AM (GMT-6)


Pink Grandma
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   Posted 10/3/2009 7:00 AM (GMT -7)   
Boy you were quick. Welcome again. Thoughts and prayers..........
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When the going gets tough....the tough get going! Don't always know where I going but I get there anyways.


hep93
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   Posted 10/3/2009 3:40 PM (GMT -7)   

Hi, JFT, and welcome to the forum.  Are you saying that just your wife has AIH and PBC (primary billiary cirrhosis), or that you also have these diseases?

I suggest you read the information in the folder at the top of the Hepatitis page, entitled Hepatitis Resources.  There is some good information in there on liver disease.  We do have quite a few people here with AIH, though can't think of anyone at the moment with PBC.  I have Hep C and cirrhosis and am a liver cancer survivor.

I hope the forum will be of help to you and your wife.  My best friend is of Danish descent (her father was from Denmark and immigrated here.)  She has many relatives in Denmark and has visited over there a number of times.  From the pictures I have seen of hers, it is a beautiful country.

Hugs,

Connie



hep93
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"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland

Post Edited (hep93) : 10/4/2009 2:37:02 PM (GMT-6)


jft
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Date Joined Oct 2009
Total Posts : 47
   Posted 10/4/2009 1:55 AM (GMT -7)   
Grandma
Thanks for your greatings.
 
To Connie.
Also thanks for the greatings and also for your suggestion.
I´ve been reading it, but to understand everything, I must read it several times.
about the sicknes. Its my wife that has AIH and PBC.
She was dx in 2003 with PBC. The disorder was builing up during the years and she started
with Ursofalk in february this year. The first symptom was itchy skin and that was cured by the Ursofalk. Then in Marts the specialist found that she mayby had AIH and a biopsy was made.
One dr told us that she didnt have AIH and anonther said she had it.
He would like her to participate in a experiment where she should have budesonid.
We chose to believe  the dr. that said she had AIH. Following this decision, and when he thought she should have budesonide, we chose not to engage in the experiment, since we would be in sure she got medicament and not a plasebo.
 
So today is my wife Entocord and Ursofalk. She takes blood tests every other week in order to follow the developments closely.
Until now she has no side effects experienced by Entocord. It should also be a medicament which is more suitable for a diseased liver.
Have you heard something about this product?
Regards from Denmark
 
Whats under the sky is natural.
Whats over...................is flying.


hep93
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Date Joined Jul 2005
Total Posts : 12014
   Posted 10/4/2009 1:50 PM (GMT -7)   
Hi, again!  The drugs you mentioned are Entocort and Urso Forte.  Entocort is the brand name for budesonide.  It is a steroid and is primarily used for people with Crohn's disease.  The other drug, Urso Forte is used to increase bile flow in those with PBC.  It seems that most people in the USA who have AIH are taking Prednisone and/or Imuran.
 
Hope this helps!
 
Connie
hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


jft
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Date Joined Oct 2009
Total Posts : 47
   Posted 10/5/2009 1:52 PM (GMT -7)   
Connie.
 Your right, bur I think that UrsoForte is a barndname to, just like ursifalk, the drugname is, I think, ursodiol.
We was told that entocord was milder than Prednisone and was more direcly for liverdecease.
Crohndecease is complitly another think than a liverdisorder.
Here in europe have uded Prednisone for AIH but slowly they are turning to use entocord.
Dont you agree that entocord is a more direcly and milder drug and with less sideeffects than Prednisone ?
Regards from Denmark
 
Whats under the sky is natural.
Whats over...................is flying.


hep93
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Date Joined Jul 2005
Total Posts : 12014
   Posted 10/5/2009 3:53 PM (GMT -7)   

jft, I do understand that Crohn's is a completely different disease.

I am happy to hear that someone is trying something other than Prednisone.  I don't know much about Entocort, but surely the side effects (especially with long-term use) are much fewer and milder than with Prednisone.  I found that Urso and Ursodiol are the same, but don't find a listing in drug references for Ursifalk...so it may not be available here, or perhaps your spelling is off.

Connie



hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland

Post Edited (hep93) : 10/5/2009 4:58:00 PM (GMT-6)


DGinSD
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Date Joined Apr 2007
Total Posts : 839
   Posted 10/5/2009 4:11 PM (GMT -7)   
jft,
 
I too have AIH.  I understand that even in the States some people are being prescribed Entocort as it is milder in its side-effect profile than pred and some folks have had serious problems taking the pred.  In the States, however, it is more common to be prescribed Pred.  As per the Urso...it really doesn't matter what the brand name is as different companies sell to different countries under a variety of names but in the end, the chemical compound is ursodeoxycholic acid.  It is primarily used in PBC.  Some AIH people take it, as do I.  I have been having elevated bilirubin readings so my hepatologist thinks that it is due to a toxic side effect of the Imuran which is cholestasis.  As I didn't want to risk a flare by lowering my Imuran dose, we are trying this to thin my bile and it seems to be working so far :-)
 
You didn't mention if your wife is on an immunosuppressant.  She really should be.  They are considered 'steroid-sparing' drugs and are used in conjunction with the steroids.  When the LFT's begin to stabilize, this will enable them to slowly wean her off the steroids.  She may need to stay on the immunosuppressants indefinitely or they may wean her off of those as well but that's usually only years after the steroid is fully weaned.
Dany
 
Diagnosed with AIH January 2007,
CMV (cytomegalovirus) June 2008
meds: Azathioprine 100mg
 
 


jft
Regular Member


Date Joined Oct 2009
Total Posts : 47
   Posted 10/6/2009 10:17 AM (GMT -7)   
Connie,
Ursofalk is the same as your Ursoforte, just comming from a german Pharm.
 
Danni,
I didnt mention any immunosuppressant and we are holding this back because it damage the boonmarrow and my wife is not at an advanged staged yet.
Here in Denmark they recomment that a treatment with stamcells should go with an immunosuppressant drug.
I belive that entocord has some effect by lowering the immundefens, thats what I understood.
 
 
Any idear if thats right ?
Regards from Denmark
 
Whats under the sky is natural.
Whats over...................is flying.


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 10/6/2009 11:37 AM (GMT -7)   
JFT, thanks for the clarification about the Ursofalk.  That's what I had thought might be the case.
 
Hopefully, Dani or someone else will answer your questions soon.
 
hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


DGinSD
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Date Joined Apr 2007
Total Posts : 839
   Posted 10/6/2009 4:05 PM (GMT -7)   
jft,
 
Steroids suppress the immune system = true (they are not solely immunosuppressants though, they are mainly anti-inflammatory drugs), however...the longterm side-effects of steroids (bone thinning, glaucoma, diabetes, stomach ulcers, thinned skin, high blood pressure, edema, etc...) are far worse for the body than the long term side-effects of immunosuppressants.  It is best, as per every hepatologist in this country, to start immunosuppressant therapy along with the steroids.  Once the liver function tests improve, the steroids can slowly be weaned off.  I am only on Imuran currently (an immunosuppressant) and I am only mildly immunosuppressed.  So not enough that my blood counts are bad but enough that my immune system is not causing further attack on my liver.  The art is figuring out the right dose for each patient so that our immune systems stop attacking us.  The steroids help but primarily to stop the inflammation caused by the attack.
 
In the end, it is up to the doctor to decide the appropriate course of treatment for each patient based on severity of disease, biopsy, response to steroids, etc...However, we are responsible for ourselves and need to stay informed on what options are out there in case we prefer trying a different approach.
 
Is your wife also on a proton pump inhibitor of some sort?  That's something to keep her stomach lining protected from the steroids...like Protonix, Aciphex, Prevacid etc...I don't know the names of those overseas but you'd be able to find out on Wikipedia.
Dany
 
Diagnosed with AIH January 2007,
CMV (cytomegalovirus) June 2008
meds: Azathioprine 100mg
 
 


jft
Regular Member


Date Joined Oct 2009
Total Posts : 47
   Posted 11/6/2009 10:41 AM (GMT -7)   
Sorry Im so late, what that with the protonpump ?
Regards from Denmark
 
Whats under the sky is natural.
Whats over...................is flying.


Charlie92
Regular Member


Date Joined Jul 2009
Total Posts : 192
   Posted 11/6/2009 11:24 AM (GMT -7)   

Connie,

My wife (Janie) has both AIH and PBC.

Charlie

______________________________________________________________________________________________________

Hi, JFT, and welcome to the forum.  Are you saying that just your wife has AIH and PBC (primary billiary cirrhosis), or that you also have these diseases?

I suggest you read the information in the folder at the top of the Hepatitis page, entitled Hepatitis Resources.  There is some good information in there on liver disease.  We do have quite a few people here with AIH, though can't think of anyone at the moment with PBC.  I have Hep C and cirrhosis and am a liver cancer survivor.

I hope the forum will be of help to you and your wife.  My best friend is of Danish descent (her father was from Denmark and immigrated here.)  She has many relatives in Denmark and has visited over there a number of times.  From the pictures I have seen of hers, it is a beautiful country.

Hugs,

Connie


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 11/6/2009 9:33 PM (GMT -7)   

JFT, that's proton pump inhibitor...a drug that protects the stomach.  Dany mentioned some of those drugs, which may be available in Finland under different names.

Charlie, you might be of help to JFT.  There is a bit of a problem with the language barrier, though.

Hugs,

Connie


hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


jft
Regular Member


Date Joined Oct 2009
Total Posts : 47
   Posted 11/7/2009 3:28 AM (GMT -7)   
Hi Connie, thanks for the explanation. Finland, I had to go to Finland, I live in Denmark.
But thanks anyway.
 
John
Regards from Denmark
 
Whats under the sky is natural.
Whats over...................is flying.


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 11/7/2009 11:26 AM (GMT -7)   

John, so sorry!  I should've remembered Denmark since my friend is of Danish descent.

Hugs,

Connie


hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


jft
Regular Member


Date Joined Oct 2009
Total Posts : 47
   Posted 11/13/2009 4:37 AM (GMT -7)   
12/11-2009.
After a somewhat cursory treatment the last time, we had a meeting today with specialist physician.

Since September this year, my wife got Entocord (budesonide) for her AIH. It was believed it could hold ALAT numbers in place (P-Alanine aminotransferase).
These figures are at 231 today and should have been at max. 70. We were on their way down, until they investigated and found AIH in April 2009.

Now we begin with 40 mg of Prednisolone in 2 weeks, then blood tests show whether there can be measured a standstill.
D. 26/11-09, we again have a meeting with the hospital, there to see what happened.

It surprises us:
- That we have seen a steady decline in ALAT until we began with Entocord in September. Then the numbers went up from 146 (July) to 231 in October.
  We think it is due to AIH and that Entocord so haven´t worked well enough or whether it is Entocord which is the reason for this increase.

We shall now at Prednisolone and start today on 13/11-09, then we will see what happens with the side effects, we are both very nervous.
I will try here to describe the process, perhaps for the benefit of myself and of others, old and new members.
 
CU

Regards from Denmark
 
Whats under the sky is natural.
Whats over...................is flying.


hep93
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Date Joined Jul 2005
Total Posts : 12014
   Posted 11/13/2009 12:43 PM (GMT -7)   

John your wife can tolerate the Prednisolone.  The main side effects are restlessness, insomnia, and weight gain/puffiness of the face ("moon face.")

Please keep us posted.

Connie


hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


DGinSD
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Date Joined Apr 2007
Total Posts : 839
   Posted 11/18/2009 3:56 PM (GMT -7)   

Hi John,

I'm sure your wife will be fine on the prednisone.  My understanding is that Entocort isn't as widely used for AIH.  Some docs here are starting to use it but the old standard is prednisone and an immunosuppressant.  The immunosuppressant, as I have mentioned, is used as a 'steroid-sparing' drug.  That way, once your wife has normal LFT's and is considered in remission, they will start dropping the prednisone dosage.  The long-term effects of the prednisone are worse on the body than the risks the immunosuppressants have.  Please keep us posted and discuss the side effects with her doctor.  I'm sure they gave you the list of them (if you look up old posts, you'll find them there too and any where online).  Some people do have steroid-induced diabetes, (I didn't but some others on here have), so that's a big thing to watch out for.  The other common effects, are insomnia, weight gain, water retention, moon-face, acne, and lots of irritability!  Be sure she takes a calcium with Vit. D supplement and ask about the proton pump inhibitors to protect her stomach.  She should also have a baseline bone density test as prednisone thins bones.

Once she is in remission and responding to her medications, she should expect the same life expectancy as anyone else.  I have been lucky to not be severely affected by joint pain or fatigue...fingers crossed.  I am however, starting to have a possible toxic side effect to my Imuran (azathioprine) but we are monitoring it.  I maintain my high energy life style.  I am a single mom and work full time.  I do multiple fundraising walks throughout the year including the breast cancer 3-day (60 miles over 3 days).  I do consider myself lucky.  I truly hope they get your wife's conditions under control.

Take care and keep us posted,


Dany
 
Diagnosed with AIH January 2007,
CMV (cytomegalovirus) June 2008
meds: Azathioprine 100mg
 
 


jft
Regular Member


Date Joined Oct 2009
Total Posts : 47
   Posted 11/19/2009 1:43 PM (GMT -7)   
Hi Dany.
Re. Entocord, then it would be a medicine that makes the same as prednisolone, just not the same amount of sideeffects.
I can not say much about the sideeffects yet, for my wife has very few sideeffects with prednisolone. Almost the same as with Entocord, temperamental, a little speedy. But now, our experience with prednisolone not very old. But it might look as if that side effects of pred is a bit worse than with Entocord.
We know only that Entocord could not beat the numbers down and now we await to take blood samples tomorrow (friday) and the outcome should we have on Monday. We wait in suspense.
Re. her stomach and medication for it, so we await the consultation we have at the university hospital on the 26th ds.
We take (when I write we, I mean my wife) 600 mg calcium, 300 mg magnesium and 25 micrograms of vitamin D per. day. This dose of calcium / magnesium we raise to double in the next week. Vitamin D as today.
Dany, I wish you every success in fundraising. It is not so much here in Denmark. Here most of the research are paid by the State.
Is it for research in collecting money in, or?
Which side are you getting with Imuran?
1000 thanks for your participation and kind words.
Regards from Denmark
 
Whats under the sky is natural.
Whats over...................is flying.


DGinSD
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Date Joined Apr 2007
Total Posts : 839
   Posted 11/23/2009 4:47 PM (GMT -7)   

John,

The fundraising walks that I do raise money for many things including research and patient care.  Different philanthropic organizations provide different services such as getting patients to treatment appointments when they have no other means, providing wigs, etc...

As per my possible toxic side effect...my bilirubin level started to climb and my LFT's remained normal so my hepatologist thinks it may be cholestasis (bile thickening) which is a hepatotoxic side effect of imuran.  So since I didn't want to lower my dosage and risk a flare, I asked if going on Urso would help.  He said it was worth a try and it did lower my bilirubin a bit.  I go back again in December to see if it's working.

Please let us know how your wife's blood work is.  I look forward to hearing good news!


Dany
 
Diagnosed with AIH January 2007,
CMV (cytomegalovirus) June 2008
meds: Azathioprine 100mg
 
 


jft
Regular Member


Date Joined Oct 2009
Total Posts : 47
   Posted 11/28/2009 4:10 AM (GMT -7)   

Then there is news from our little family.

The 13. November 2009, we were told by our specialist that we should start a treatment with prednisolone. The reason for this was that treatment with Budesonide did not have ALAT figures to go down, on the contrary they increased.
1 weeks after my wife would then have a blood test. Here the number increased again.
So the question was whether treatment should continue, with a larger dose. But we made a graphic of ALAT figures. It showed clearly a very large increase every time we began a treatment. In the weeks thereafter were small increases. This gave us the suspicion that it could be that my wife does not have the active AIH.
She had tissue type, that was in the genes, that she was predisposed to AIH, but was not active.

That we talked about with the specialist and he was totally agree.


Conclusion:
She is steppin out of prednisolone at 5 mg / week. Followed through blood tests every 2 weeks.
We are then left with PBC, wich we ry to hold down by a, perhaps increased treatment, with ursofalk.

We hope our ideas and the future remains where we want it, but for now it appears that the PBC is our only company.

I and my wife thank you very much for the good advice and words we have received.
Thank you.


Regards from Denmark
 
Whats under the sky is natural.
Whats over...................is flying.


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 11/28/2009 10:41 AM (GMT -7)   

John, I think that is great news!  One less thing to worry about!

Please let us know how your wife does on the new regimen.

Hugs,

Connie


hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


jft
Regular Member


Date Joined Oct 2009
Total Posts : 47
   Posted 11/28/2009 11:27 AM (GMT -7)   
 

Connie, yes it has been a stressful time, but it just shows that even specialists can be out on shaky ground with what to do.
At the same time it shows that you can never be 100% sure how to interpret the data coming from various samples.
We know now that budesonide and prednisolone can stress the liver so much that one could believe there was an active AIH.
This is obviously a valuable knowledge of all the proffs and amateurs.


Regards from Denmark
 
Whats under the sky is natural.
Whats over...................is flying.


FinnstersMom
New Member


Date Joined Mar 2009
Total Posts : 18
   Posted 12/30/2009 1:54 PM (GMT -7)   
Hi there! I've been off the forum for a while but am catching up today. I am a 37 female also with PBC, I'm being treated by the Mayo Clinic in Jacksonville, Florida in the U.S. For many months they thought I may have AIH also, the two are common together, however, after a course of treatment on prednisone my liver function tests didn't change and they took me off the Prednisone determining I did not have AIH. My story is very similar to your wife's.

Let me say here that I think it's great that you are researching your wife's illness and taking such a big role in her treatment and recovery.

I have now been on UrsoForte for 1 year. It has significantly helped my itchiness, which is now pretty much gone except for the occasional day here and there. I have changed my diet which has also helped greatly. The Urso didn't do it completely on it's own. I have cut out red meat, allowing myself a burger or steak once a month or so. I have cut out processed foods and alcohol. I was never a big drinker, maybe just a couple of drinks a month but the funny thing is that I find myself wanting a drink now that I can't have one! Weird. Never craved it before but it's funny the tricks your mind will play when you are told you can't have something. I also try to eat a lot of fresh veggies. With the christmas holidays I've been remise on adhering to this diet and am anxious to get back on track.

My levels are much better, but not anywhere near normal. My docs have indicated it's probably as good as it's going to get. So now I'm in a waiting game. How much damage will be done to my liver and how long it will last is a mystery. We would like to continue growing our family but my husband is very hesitant as PBC could be bad for the baby and me.

Hope your wife continues to do well.
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