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Posted 8/10/2009 10:01 PM (GMT 0)
 

Hi All,

As I told you all last week two weeks ago that my levels were starting to go up again when I got to 5 mg.  I just got the latest results AST 66 ALT 118 it seems whenever I get to 5mg they go up I talked to the doctor and he suggested I go back up to 20mg said I can try 10mg but probably would not work at this point.  I have had no drinking or new medication and yet they still go up I have no symptoms and feel fine.  Has anyone successfully weaned off the prednisone without taking an additional drug like Imuran or Cellcept?  I cannot take Imuran and my doctor does not seem to like cellcept he gave me Ursosodiol which had done nothing.

Any advice let me know.  I know the hep doc is going to want me to have another liver biopsy but I have had 2 in 4 years and they punctured my gallbladder with the last one so that is out.  Both lliver biopsy were good no fibroses slight inflamation.

MJ

Posted 8/10/2009 11:34 PM (GMT 0)

Jerry, I can't answer your med question, but I would think that the liver doc can order an MRI with contrast to see what condition your liver is in.  I had a biopsy in '93 when I was diagnosed with hep C and didn't have another until surgery to remove the rt. lobe in '07.  They did a bx of the lt. lobe while I was under anesthesia.  Mayo has never pushed me for biopsies as they can tell a great deal just from scans.

Hugs,

Connie

Posted 8/11/2009 4:53 AM (GMT 0)
MJ,

Perhaps they can go the transjugular route...that's how they did mine. My liver was so off I wasn't able to clot so they couldn't do the percutaneous biopsy for risk of bleeding out into my abdomen.
You said whenever you get to 5mg, you flare...that's actually common with people who wean down too quickly. What dose were you at prior to 5mg and how long were you there?
What's your doc's rationale for disliking CellCept? Many people who can't take Imuran take it. It was the first immunosuppressant I was on as I needed something to work quickly. Once stable I was switched to Imuran. So now I am off pred (since Dec 2008) and on 100mg Imuran only. Do you see a hepatologist or a GI doc?
Posted 8/11/2009 11:09 AM (GMT 0)
 

I had a cat scan with contrast on JUly 15th 09 and it showed a small cyst in the right lobe that has been there from the beginning and the feel is nothing and no other focal lesions in the liver.  You may be right I get to anixious to wean down I was on 10 mg for a month then went to 7.5 for a month then went to 5mg because my last two Glucose Erum were high and I know that is caused from steriods.  I also have a heart condition and high blood Pressure so the steriods only make things worse I have not been able to take any statins for my high cholestrol because that is what they feel caused the autoimmune attach to begin with so I feel I either treat the heart or the liver.

I go to both a Hep Doc at the Center for Liver Diease in Miami who works direct with Dr. Eugene Schiff who is suppose to be the best in liver diease and a gastro doctor here who manages me on a regular basis with contact from the doctor in Miami.  When I asked about Cellcept I was told it would react the same way with me as Imuran, throwing up, etc., plus with the Imuran my levels went up.   Not sure at this point what to do I started on 15mg yesterday and hop that works and I do not have to go back on higher doses.

Jerry1

Posted 8/11/2009 3:03 PM (GMT 0)

Hi again,

The cause that those with intolerance have to Imuran is an inability to metabolize it so it builds up to toxic levels... http://en.wikipedia.org/wiki/Thiopurine_methyltransferase  There is a blood test they can do for it.  That is completely different than how CellCept works and it wouldn't hurt to ask them to at least try it.  All the immunosuppressants are 'steroid-sparing' drugs which help wean off the pred, as I'm sure you know.  There are a lot of people on the Yahoo group that aren't able to take the Imuran but are fine on the CellCept.  A lot of people who flare after the 7.5mg drop to 5mg go much slower the next time around. So when they are at 7.5mg and start weaning from there, once LFT's are normal, they go down 0.5mg at a time.  It helps the adrenals kick back in better.  How long since your diagnosis and starting pred?  I only worry that they are trying to get you off the pred and maintain you on nothing.  With your history of flare on the pred, what happens when you are fully off and flare again?  It will always be the same cycle as there is such a high relapse rate with this disease.  There's also another lady I know of who couldn't take Imuran or CellCept (but at least they had her try) who is on cyclosporine.  My hep has also mentioned Tacrolimus  (http://en.wikipedia.org/wiki/Tacrolimus)  as an option.  I think you should insist they try something as your liver will only incur more damage if you get off the pred with no back up.

Please tell them you insist on trying a different immunosuppressant.  Now that you have gone back up on the pred is a great time to do it!  CellCept works immediately unlike Imuran that takes 2 months to fully kick-in.  I don't know about the Tacrolimus or the cyclosporine.

 You are your own advocate!

Posted 8/11/2009 3:19 PM (GMT 0)
Also, I'm sure it's very frustrating having a heart condition and high BP on top of it all and having to choose which disease to treat.  Maybe on one of the other immunosuppressants you can also treat those with proper medication.

It may also be possible to fully wean off the pred without immunosuppressants if you wean super slowly and make sure your labs are checked very often to make sure you are ready for another drop in pred.

I do wish you lots of luck and please let us know how this new bump up in pred goes!

Posted 8/11/2009 5:10 PM (GMT 0)
 

Thanks for the information Dany I agree I need something that will work to get me off the steriods or at least down to a level I can maintain.  I have sent an email to my Hep Doc and have not yet received a reply.  I am also going to try my Gastro Doc but he usually defers to the Hep Doc because he said they are the experts.   You are right I keep going up and down in the beginning of this year I was off all medicine for 4 months then it started up again.  I also believe that I will not be able to go completely off medication but I need to have a something that will allow me to take a statin and treat my heart condition which is probably worse than my liver.

Jerry1

Posted 8/12/2009 8:04 AM (GMT 0)
I have AIH my doc told me that you have to be on something with the pred because when you stop the pred you disase becomes active again. Unless you are taking Imuran or something like that. I cant take imuran so my doc was thinking about 6mp.
Good luck
Posted 8/18/2009 12:12 AM (GMT 0)
Hi!  I have AIH, too.  I couldn't tolerate immuran at all--I was severely fatigued, and I was too nauseated to eat enough.  Plus, my enzymes started going up, even with 40 mg prednisone.  I did, however, do very well on Cellcept.--only very mild nausea, and no other side effects at all.  So, although cellcept and imuran have the same side effect profile, they don't react the same in the body.  Plus, my enzymes have been good.  Maybe your doctor could give cellcept another look?

Pix

Posted 8/24/2009 5:43 PM (GMT 0)
Hi Jerry, I have been reading everyone else's post to you. I can agree with all of them. I have been on all started with Imuran then went to 6mp going to cellcept for years and not because I had reactions to them. But They had a hard time weining me from pred. Then after about 12 years I went to Mass General to a GI and he is one of the best in New England. He has me on Imuran-150 and 2 mg of Prograf which is usually not used until after a transplant. But they have found in the harder to treat patients it has worked over and over. I also have never been able to go below 5mg of pred hopfully until now I just dropped to 2.5 and anxiously waiting to have labs to see where I am. I have never been this low. Mention this drug to your doctors and see what they say. Anything is worth a try at this point. Your AIM will get worse if you don't have that backup behind the pred.
Take care cj7
Posted 9/1/2009 7:54 PM (GMT 0)
 

Hi All,

Well after going to 20mg of prednisone my levels last week were AST 36 ALT 63 they came down quite a bit with the increase in Prednisone.  I went for another blood test this morning and should have the results by tomorrow evening.

I also have an appointment with the head Hep doctor at the Center for Liver Disease  in Miami to discuss trying something to get me off prednisone.  Since I made this appointment they are now checking bone density, Vitamin A, D, K levels etc. not sure why they were never checked before but hopefully he will put me on Cellcept or MP6 and I can get off Prednisone.

Jerry1  

Posted 9/1/2009 10:37 PM (GMT 0)

Hey!

Glad to hear your numbers are better!  I hope one of the immunosuppressants will work for you!  Good to hear you're going for a bone density check and they are fully checking everything else.  I don't think I ever had my vitamin levels checked...maybe I'll ask about that on Thursday when I go for my hep check up.  I had bloods drawn today...it's always nerve wracking when an appointment comes up.  It'll be good to know what's going on in there.  I've been plenty stressed lately and am worried about it causing a flare.

Keep us posted on how your appointment goes.

Posted 9/3/2009 2:38 PM (GMT 0)
 

Hi All,

Well results of blood test from Tuesday were a little better AST 32 Alt 56 I am still currently on 20mg of Prednisone.  Spoke with my Gasto Guy and he suggested I stay on 20mg until I see the Hep Doctor in Miami and hopefully they will be normal by then I go on the 17th.  Dr. Eugene Schiff is suppose to be an expert in liver disease so hopefully he can suggest another drug to get me off this prednisone.

Has anyone tried the 6MP that was unable to take the Imuran?  I was on Imuran for 3 weeks when I got really sick and levels went sky high.  Doctors suggesting 6MP is it the same?

Jerry1 

Posted 9/3/2009 3:09 PM (GMT 0)

Jerry1,

Imuran (azathioprine) converts to 6MP.  There is a test that can be done (blood) to test for deficiencies in TPMT.  It's an enzyme needed for safely taking either azathioprine or 6MP.  You can request the test and if you had trouble with the Imuran, they should have done it.  Personally, I didn't have trouble so they didn't do it but I know many others who have.  Aside from those 2 immunosuppressants...there are others.  CellCept, Cyclosporine, Tacrolimus.  I'd bring all these up to Dr. Schiff...I'm sure he'll bring them up to you being an expert in liver disease...he'll know!  When's your appt?

Sounds like your numbers are pretty great..only a few numbers less and you'll definitely be in normal range no matter which lab is running your samples (they all vary for what are 'normal', that's why they usually show the range of their normal beside your values).

I know the pred sucks...on the plus side, once you get on an immunosuppressant (and it's fully on board--I think the others act quickly, I know CellCept does), they'll start to lower your dose.  All my crappy side effects started going away when I got down to 10mg which was only 2 drops from where you're at...I had a small stop at 15mg on the way.

Good luck!

Posted 9/3/2009 3:44 PM (GMT 0)
 

Dany,

Thanks for the information my appointmet with Dr. Schiff is Sept 17th.  I am going to email them now and ask about being tested with the TPMT then at least I will know before trying 6MP and maybe go right to Cellcept.

Thanks again

Jerry1

Posted 9/16/2009 5:53 AM (GMT 0)
I am severely reactive to steroids of all types (steroid induced psychosis) regardless of dose and even in small amounts such as in adavair. My liver enzymes ALT, AST, etc are all over 100 ASMA 36 and AMA and ANA came back positive . Doctor wants to discuss treatment this week now that the diagnosis is for sure. What are my options?
Posted 9/16/2009 3:48 PM (GMT 0)
 

Hi All,

Well have been on 20mg and numbers were returning to normal no change and all of a sudden they are going back up.  Yesterday's blood test was AST42 ALT 69 I have no idea why the bump up.  I even stopped my other medication fish oil, baby asprin, and cut my blood pressure in half in the hope that they would be normal when I went to the Hep doctor tomorrow.  Instead of going down they went up I just know he is going to increase the Prednsione again.  Does diet affect the numbers I have no idea what I did to have an increase.  I know they are not real high and still better than where they were but no reason for increase.   I go tomorrow and hopefully will get some answers.

Jerry1 

Posted 9/17/2009 5:29 PM (GMT 0)
Hi Jerry, Sorry to hear about your flare up. It feels like a roolercoaster sometimes doesn't it. I finally got my levels down. Plus down to 2.5mg of pred. So excited but now I am not feeling well at all and I feel like here we go with another flareup. Have some tests tommorrow and probably won'y hear until next week. Let's hope it's not related to my liver.
Your ast and alt's look rreally good to me. I am finding we have to drop pred very slow. I would rather be on for 6mths to a year even if it means in the end I will be off. My arthritis and back can't take much more of it.
I hope that you get aggressive and not frustrated about your treatment. I hope this new doctor is really good for you. Mine started me on 2mg of Prograf which they don't usually use until after a transplant. But it has proven to work in very small doses for us patients who are having a hard time getting off pred. But I also take 150mg Imuran with it. But there could be other options. Ask all questions and leave nothing unturned. Stress is one of the worst things for your liver but we all know how hard it iis to stay focused and calm especially when your not feeling well. Take care and will watch for some great news for you.

cj7
Posted 9/17/2009 9:45 PM (GMT 0)
My sis (52) was diagnosed with 90% cirrhosis liver gone , active hepatitis C and bleeding avarices , 4 weeks ago. She / us did not even know she had cirrhosis. And the dr.s are not givin her any medication except blood press pills , but they wont' tell us an estimated time of death, which I know that no dr. will, but we are all new to this and don't really know what to expect. The said end state liver diesese ????????? right now she seems fine except her back hurts, so any help on this topic would be appreciated.
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