Steroids for PBC/Hepatitis overlap syndrome

[Lindilou]

Just started 8 weeks of steroids for PBC/Hepatitis overlap syndrome, does anyone else have this combination and did the steroids help? thanks xx

[Alley27]

Hi Lindilou....Ihave this combinbation and was put on steroids 10 weeks ago. I am newly diagnosed after a bad bout of jaundice and a 3 week stay in hospital. I am still learning about these conditions. Steroids help reduce inflammation anywhere in your body, in our case the inflammation would be a result of the hepatitis.....My liver function tests were very abnormal, but since I have been on the prednisolone, they are improving also liver inflammation is improving.

I will also be going on azathioprine from my next appointment which is 5th July. This is an immunosuppressant that helps control the antibodies, which hopefully will help a lot with symptoms. This is according to my consultant the normal way to treat our conditions.....Azathioprine is not to be taken lightly and I was given lots of information from my consultant so I could make an informed decision..and I am willing to give it a go, if it can help.

I don't like the steroids....my face has started to round lol.....and am putting on a little weight, which s so funny as I have no appetite and can't eat much..but they are helping....

xxconniefused.

[terri2109 in reply to Alley27]

Hi Connie

I know this post was a lon g time ago, when I got diagnosed with pbc actually, but it so relates to my present condition which is aih overlap. The breathlessness the pred, tiredness,bad tempered, round face, round body lol, I also have a bit of Jack of understanding from family which all just makes you feel a bit down.

I now, after 5 weeks of ired, have been told that because I'm not feeling much better , it may be inflammation with pbc rather than AIH. I'm just confused and wondered where you are now?

[Lindilou]

Hi Conniefused, thanks for your quick reply. I have so much to write but trying to condense

Sorry to hear about your stay in hospital and the jaundice, good to hear the steroids are helping to reduce the inflammation.

I was diagnosed about 10 years ago with PBC and began with urso last June. After much monitoring of the bloods and a biopsy in December my consultant suspected PBC/hepatitis overlap which is why i have started on the prednisolone (4 days into them). Only difference i have noticed is spots on my forehead and back have finally gone after years of trying to get rid of them lol?

I am monitoring the weight anyway as I was under a nutrionist, which has not made huge difference, but bloods went down and not up so im in it for the long term, who knows.im willing to try every avenue. the diet i was following has given me more energy too (or it might just be the weight loss, who knows)

It will be interesting to see if my next step will be the azathioprine, I feel well at the moment though and hate the thought of taking pills, but I cant see whats going on on the inside, so I will continue to do as I am told

xxxx

[Jtxx]

My story re PBC/AIH overlap syndrome:-

* 26.07.11 - Diagnosed with AIH - Raised LFT's. Given Prednisolone 40mg

* 03.08.11 - Results from biopsy confirmed PBC!!! Weaned off Prednisolone over the next 8 weeks. Put on Urso 1000mg.

* 21.11.11 - LFT's raised again (3 times the level they were on 26.07.11) - Put on Budenofalk 9mg (also a steroid but you can only take this one if you do not have cirrhosis)

* 14.12.11 - Finally diagnosed with PBC/AIH overlap syndrome - Given Azathioprine 50mg for a month, increased to 100mg for 6 weeks, increased again to 150mg for 2 months, now reduced back to 100mg for the last 2 months.(Bit of a balancing act). The reason they had to reduce the doze to 100mg is that my white blood count went too low. Still not great but slightly improved.

I will tell you that the side effects from the Prednisolone were not nice for me so when they told me I had to go back on steroids I said that I did not want to and he basically told me that if the AIH part of the diagnosis was left untreated I could be dead in 3 or 4 years! No choice really! He came up with an alternative to try which is Budenofalk, which I am still on. Apparantly, as I said above, you can only go on this steroid if you do not have cirrhosis of the liver. This is working out much better for me and I do not have as many side effects from them. Still got the moonface, put on a bit of weight (probably combination of steroids and Urso) and slight anxiety at times, but I am hoping to be off the steroids altogether in a couple of weeks. (hoping to maintain LFTs on Azathioprine). LFT's are behaving nicely but WBC is still on the low side. Had to go to the out of hours surgery on Saturday morning as I had an infected throat and a kidney infection.(got antibiotics and feeling a bit more human now.....

I am seeing the consultant tomorrow so hope all goes according to treatment plan.

Hope this information helps. x

[Lindilou in reply to Jtxx]

Sorry to hear aboiut the kidney and throat infection, we dont do anything by halves do we.

Thank you for all the info it is a huge help/reassurance, keeping notes for my next appointment too. I'm currently on 40mg of Prednisolone and 500mg urso a day, little bit breathless yesterday maybe getting anxious (at least I know why now).

Hope all goes well at your next appointment xx

[Jtxx in reply to Lindilou]

Coming off the steroids at the end of June. Need to see how I get on without them. To get bloods taken 2 weeks after I stop and then again 3 weeks after that, which is the week before I see the consultant again. He was happy with my progress. X

[Lindilou in reply to Jtxx]

Thats good, fingers crossed you can stay off them xxx

[Jtxx in reply to Lindilou]

I know. Plan is to remain on Azathioprine and see how I get on for the next 2 years and then he wants to take me off them to see if I can stay in remission! Only about 30% of patients stay in remission without any medication so let's hope I am in the minority for something positive this time!! Positive thinking!! X

[Tumbleweed41 in reply to Jtxx]

Glad to hear this Jtxx - Please keep us informed as to how you do.

[Tumbleweed41 in reply to Tumbleweed41]

P.S. lol

Do you know what "stage" or "level" you are with the PBC?

[Jtxx in reply to Tumbleweed41]

I am at Stage 1/2 for PBC, as far as I know but no idea regarding AIH as my biopsy did not show AIH but my bloods do......go figure!! xx

[Judy48]

Ihave Hep C and was recently diagnosed with PBC in April 2012. I asked about steroids and was told I did not need to take them. I was also advised that if I did not have to bad of a reaction to Urso that I could again do the Interferon/ Pegais treatment for the Hep C. My big problem is that over the last 7 years I have had 5 back surgeries and right shoulder repair so I live with cronic pain. I was at one time being seen at the pain clinic and they had me on such a coctail of pain medications that I could not function. Now I am trying to figure out what medications are avaliable for the pain without causing to much further damage to the liver. Anyone on pain medications.. If there anyone taking anything for the sleeplessness and fatigue. I currently take Trazadone and Ambien to sleep but I am not sleeping well at all. Any thoughts !!!

[Tumbleweed41]

So far I am in agreement with most of this. -

Lindilou - I am 70yrs and was diagnosed with AIH/PBC overlap in Aug of '07. Was on 40mg Prednisone (I'm in the US), then put on Ursodiol 900mg and then Azathioprine 75mg. I was weaned off the Pred. by July of '08 - after moonface, weight gain (after working hard to LOSE weight - ), and horrible mood swings. The swings could have been just my reaction to the Pred. - I still have not lost the majority of the weight so have resigned myself to the fact that I will probably die with "oatmeal legs". lol

About 3? years ago a coworker of my son-in-law told my son-in-law that he had Hep C and was taking Milk Thistle (never did say what dosage) and that he didn't have to do all those horrible drugs and things that a lot (not all) of Hep C'ers had to do. My daughter told me about this, being I had a "Hepatitis/liver problem". To make a long story short, I have been taking 2000mg (2 thousand) Milk Thistle 2x day, after working up from 1000mg once a day, and have kept my numbers down with no side effects. Tested to make sure it was the MT by not taking it for a full month and my numbers went up - took again and numbers came down and are staying down. AST and ALT are in the normal range and ALK PHOS is just slightly elevated - like 10 > 20 points. I am not saying that MT is for everyone but if you have a Dr./consultant that will agree to herbs you might have a go at it. -

My 2 cents -

[Lindilou in reply to Tumbleweed41]

Thanks for advice, I read about Milk Thistle and a nutrionist advised me to take 350mg a day I done this for around a month but just came off last week to start with steroids. Another one to bring up with the consultant next visit

[sherikaye]

Hello,

I need some advise. I was diagnosed with PBC 4 years ago. I was stage 2 then. I jumped to stage 4 last year. My liver enzymes are not getting better on the urso so the doctor is adding a new drug, Ocaliva. Have any of you tried this drug? The side effects are horrible from what I have been reading and I'm terrified to start it. My doctor says if I don't do something NOW to stop the progression of my PBC w/overlap, I will be dead in a year. Yes, I said a year! I refused to take prednisone for the obvious reasons: weight gain!! 4 Years ago I did a gastric sleeve surgery to loose weight. Iost 85 lbs, which I have gained back 45 lbs from the Urso now. I can not imagine the weight I would gain from taking steroids. I just can't do it.

Is there anyone out there that took this and didn't gain weight?

[gwillistexas in reply to sherikaye]

Sherikaye, I started Oclavia one week ago. Zero side effects. Allergic to Urso so this is second choice. Probably no more side effects than Urso. Good luck.

[Sachin1234 in reply to sherikaye]

I think you need to be more worried about your liver then your weight gain!