Hi, been a member for a while but have never posted. I was diagnosed with PBC in June 2015, was found through raised LFTs after a routine blood test. Unfortunately my labs never fully responded to Urso and most of the time feel fine. Have mild itching from time to time and recently a bit of fatigue and pain, after more tests and biopsy i was diagnosed with AIH overlap last week. I have been started on 40mg prednisolone for 2 weeks reducing by 5mg weekly after that with weekly blood tests. I have not felt very well since starting these drugs i feel nauseous and have a constant mild headache. Does anyone have any similar experience with this. I live on the west coast of scotland and feel a bit isolated have never met any other sufferers as there have been no meetings near enough for me to travel to. Sorry for the long story!
Sandra
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SandraS
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Yes same as you posted feeling sick on Prednisone I tapered off on my own and will not take predisone anymore the doctor will have to figure out another drug ..the first set of blood tests all my numbers went down ..now the blood tests from yesterday show my ALT going back to high range the ALP continues to go down it went from 600 and now it's at 186 the AST was 123 then last week 23 and now it's 50 it's still in the normal range but I think it's traveling back up regardless I am not staying on prednisone
Sorry to hear your having issues too, i will persevere and hope my numbers improve my ALP has always been in the 500/600 range. Also hoping my body adjusts to these with time although i may just pass out before then as I've also suffered from the insomnia side effect! Hope you find something that works for you.
Thats my concern, although consultant did say they may leave me on a maintenance dose, they are also talking about starting me on obetacholic acid in the near future but they didn't want to do it all at once. I'll keep you all posted how i get on.
You have to fight the side affects if you want to live. I have both too. When my prednisone was tapered to 17.5 I was more manageable. It’s tuff. The fatigue and headaches does get better as you taper. Please try again with the prednisone for your health
I am persevering and will finish the course, i had a bad day yesterday think i may have had a stomach bug on top of the meds side effects as its not as bad today also had a night of insomnia which never helps! Hope you're feeling better
Hi Sandra5.... I was just diagnosed with PBC a couple of days ago but it's been an on going thing for the last 1 1/2 years. It's been a very slow process and have to eliminate other factors before finally being able to diagnosis me.
I just started pretisone and urso this week and that's my fear as well. I have a very sensitive stomach and get nausea from antibiotics.
My liver enzymes are very elevated. I have jaundice, itching and I'm so tired. But something has to make me feel better than this.
I'll keep you posted as I see if my body can tolerate these new meds and I hope things get better for you.
Hi Teri1755 welcome to the group, I saw your previous post you havent had an easy time! This is a great support group and although this is my first time posting i have gained much valued information from other members. Have you joined the PBC foundation?
My stomach is usually ok with meds but I've never had steroids before and its quite a high dose, I'm hoping with a bit of time I'll adjust. Hope you feel better soon, I will update my post when i get my bloods done next week.
Hi all I hope they get something that works for us all with less side effects because I cannot take steroids and now I have taken myself off Ursofalk after using it for 15 years,it was doing it’s job but the last two years been suffering from horrible itching. I thought I better stop for a month and then get my blood tested. If the itching has nothing to do with Ursofalk I might go back to it. Also suffering from nausea in my late days with Ursofalk. I really would like different medications for a change, because I believe my body now has developed antibodies for Ursofalk!
I also was diagnosed with PBC in 2015 and then AIH this time last year. I started on 45mg Prednisone on the 3/2/17 and then was reduced by 5mg a week until 10mg which I'm still taking.
I too had the nausea and my Consultant prescribed Omeprazole which helped. You should mention to your GP or Consultant about the headaches and nausea and see what they say. We have enough to endure without adding more symptoms 😊.
Were they able to tell you what stage your AIH is at and were you put on an immune suppressant?
I live in Northern Ireland and know of no one else here with AIH/PBC overlap so very glad of this forum to glean more information.
Haven't actually seen GI since dx he phoned the biopsy results through to me so never got a chance to speak to him properly next hospital visit is in April so will ask about staging and the immunosuppressive drug then. Hope you are well
I am on steriods for AIH I an on a maintenance dose 5mg I also take azathrioprine which gives me nausea every day yes I do find my eyes blurr I do not have PBC
It has been well documented by patients that prednisolone comes with a range of side effects. However, it has also been proven to be successful in leading an improvement in AIH.
It is not uncommon to have a first period of high(er) dose predisolone which is then tapered. This first session can sometimes be enough. Other times, there is a need for a maintenance dose. There is sometimes the need to re-raise the required prednisolone.
It isn't always an easy journey but it is a medication that seems to help in the long term.
Thanks Robert, I'm sure it was all explained in detail and the diagnosis was as expected but sometimes too much info and it doesn't all sink in (or maybe thats the brain fog lol) I'd be lost and totally isolated if it weren't for the foundation and the lovely people on this forum. Hoping this treatment is enough and I can get back to some sort of normal had enough of hospitals for a while!
I had this too with prednisolone but side effects reduced as the dose was tapered. Once l was on a steady dose of immunosuppressant and the inflammation on/in/around my liver went down, l was able to stop prednisolone altogether. Once l was on maybe 5 mgs prednisolone per day side effects were minimal. BTW l am in Scotland - Perthshire. A few years ago there was a woman from Glasgow on here with similar dx. She got her care at RAH Paisley, l think. I am in Tayside.
I was diagnosed with Pbc in June 2014 and have had JRA (in and out of remission) since 1977. I was put on prednisone during a JRA flare up in 2006. Though it made me feel ill, the pay off was worth it as it was the next stage after being on methotrexate and it was all about getting me back in to remission. Of you can look at it from that perspective, that it's part of the solution and only short term, maybe that will help you cope better with any side effects. I have had a roller coaster response with urso. Sometimea my blood results were good, other times they were bad. After a few years of trying I think I finally worked out what worked best for me. I take my urso at the exact time of morning and evening every day and with food and a full glass of water. My last bloods showed the best results ever and my itching had completely stopped. This,. Of course, is just my experience. We're all different, but it may help you come up with ways to get it right for you. I'm in Australia, but my family are originally from Scotland. I was just over there for 5 weeks for Christmas and new year. Wishing you all the best. Cheers, Helen
I also have confirmed diagnosis of PBC/AIH overlap (Dec 2017) after blood tests, ultrasound and biopsy. Initially put on Pred (30 mg daily) and Urso (250 mg 3 times a day). The itching reduced greatly almost immediately and I am lucky in that I haven't suffered any side effects as yet. Alkaline Phosphatase has reduced from 1200 to 296, bilirubin down from 35 to 24 (in just 6 weeks). ALT is more stubborn and is at 200. My dose of Pred has been increased to 40 mg daily and I now take URSO 500 mg twice a day. Also been given Omeprazole to prevent stomach ulcers (I think). When I first received medication, I had had a painful frozen shoulder for about 4 months - this also cleared more or less immediately. I was told by my consultant that I would probably be on the steroids for 6 -12 months but they are likely to be tapered off at some point. I am having bloods taken and checked 3 weekly and I am due back at the consultants in about 6 weeks time to check progress. I feel really lucky at present that I feel so well but I suspect that things could possibly change at any time. Hope your doctors manage to sort out a medication package that helps improve your condition without creating horrible side-effects.
Just like to thank everyone on this site for their invaluable support and advice. It is a scary time when you first get your diagnosis but there are so many positive stories from people who continue to live life to the full despite this awful condition.
Yes, I can be doing nothing and get cramps anywhere. Most difficult to deal with is sometimes my neck / throat area cramps and it is scary. I must relax and let it pass. I take sublingual magnesium for relief and quinine everyday. Best to you.
Not sure if this applies (I had UC, I'm having liver problems now, but when I took pred I did not), but pred unfortunately does that. I've been on 40 mg for severe UC and it definitely does do that. I take it with milk, which helps way more than not. Are you having other symptoms? I've been on it a few times, I might be able to shed some light on it. I never used it for AIH (that might change though. Which sucks cause I just got off a couple months ago!)
Not on prednisolone now, was tapered off and stopped in july. As expected my numbers went back up so now taking budesonide and azathiprine. No side effects this time, the budesonide is much easier on body. So far numbers reducing.
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