Found this group thru another forum that I joined 4 1/2 yrs ago (Aug. 2007) when I was diagnosed with AIH/PBC overlap syndrome stage 3. I am now 70 yrs old and hoping to have several more years but if I can do anything to help all you "youngn's" I will be satisfied. -
I was started on 40mg. Prednisone and 2mos. later put on 900mg Ursodiol. My Dr. was a Gastroenterologist/Hepatologist and wonderful. He was patient when I had a whole list of questions and pretty much answered them all. I think some of them he skirted around because he didn't want me to know just how serious this was. After about 6wks of the Pred. we started reducing it and in July of '08 I was off and have stayed off -:). My understanding is that I will always be on Ursodiol as well as the 75mg of Azthioprine, which was started about a month after the Urso. Joy! -
We have moved twice since being diagnosed and always having to find a new Dr. that knows about both diseases is not easy - as some of you know. That is why I referred to my first Dr. as "he was". He's still breathing as best I know. lol
I can relate to the fatigue that you all refer too. It all makes a bit more sense now and my husband knows that I'm not just getting old and tired. lol. Like some of you I have my good days and my not so good days but it does help to know that there is actually a reason behind the not so good ones other than age. lol.
Since the beginning of this year I have also been given the news that I have AVNRT (it's a heart thing) which cleared up that I did not have Angina for the last 45years, and also COPD/Emphesyma (sp?) - so I understand the drug interaction problem.
"Nuff for this time. -
Geri
USA - Midwest
Written by
Tumbleweed41
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Welcome Geri. Most people on this site have PBC but there are a couple of us who have AIH/PBC overlap syndrome. I am being weaned off the steroids and hope to be only on the Azathioprine and Urso. What are your ALT and AST levels sitting at? Have they discussed trying to take you off the Azathioprine to see if you could remain in remission? Do you know anyone who has successfully come off them? Are you a member of the PBC Foundation in Edinburgh? If not check out their website. Great source of information and support. X
I don't know what my ALT and AST numbers are at the moment but I do know that they are in the "normal" range. My Alk Phos. was 150 about a week ago. (it was over 1200 at dx).
I have been taking 4000 (that's 4 thousand) mg of Milk Thistle a day - 2000mg/twice daily - and have seen significant improvement. I tested it one month > stopped the MT completely and my #s jumped; went back on and my #s came back down.
I would be absolutely thrilled if I could get off ANY of these meds, and no, I don't know anyone who has even tried to come off the Aza. I'm also on Amlodopine for BP; Sotalol for heart (Cardio. said never off); Budesonide inhalation therapy as well as Spiriva inhaler with Albuterol inhalation as emergency backup for COPD; Dicyclomine for intestinal trouble and Rantitidine for GERD like symptoms. YUK!! LOL
I went thru the Foundation to see if there were any groups here in the States and this was my "first stop" -:). Are you a member of the AIH forum in the UK?
If I remember right (I was a bit tired last night) I was reading that you have several of you family with this wonderful disease. (AIH). So far none of my siblings have been dx with any unless Parkinson's is one. My next younger sister (she's 66) has Parkinsons -
My mother had PBC (died 8yrs ago aged 57 which was 12yrs after liver transplant). Her older sister (annscot) also has PBC. I am the only one with AIH/PBC overlap.
I could only find an old AIH Forum on the web. Where would I find the current one? X
Have signed into the AIH link you have given me above. Thank you, although I am not too sure how to navigate around it? I think I am just used to this user friendly forum. No doubt I will find my feet. Just have to persevere. x
Glad you found the Forum. - Some really wonderful people on there. It really isn't a whole lot different than this one as to the navigation - just different titles. -:).
Hi there in the USA, IRELAND here! Just quick question ( have u been taking the milk thistle since diagnosis? I ask as I tried it also when first diagnosed in 2002 but now wonder if i wasn't taking a high enough dose or didn't take it for long enough ( was on it for 6 weeks). I am only posting this question now as relatively new to the site & really only finding my way round it now thus have just read ur blog!
If my memory serves me good - and that is always questionable - lol - I started taking the Milk Thistle about 4 years ago. (I think I stated somewhere else that it was 3yrs) I was dx in 2007 but didn't start the MT for about a year or so. I started off slow but gradually took it up to the current 2000mg 2 times a day. I am maintaining a "normal level" on my LFT, ALT, and AST,so will stay at that dosage. As I mentioned above, I tested the MT about a year and a half ago to see if it was doing any good. You might want to try it again, start out slow to make sure you have no side effects (shouldn't) and then gradually increase it to a dosage that works for you. How often to you get your blood tested? When I tested the MT I was having labs every month.
Hope you stay with the Forum. There is a tremendous amount of information/help/support here.
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constipation and pbc
New Diagnosis
Phosphatase not dropping
Current Labs and starting "real" URSO Forte Dec. 11th. 
