Pbc and autoimmune hepatitis: Hi sorry I have... - PBC Foundation

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Pbc and autoimmune hepatitis

Cherry69
Cherry69

Hi sorry I have not been on here for a long time but I want to my hospital appointment a few weeks ago and they think I have now got autoimmune hepatitis with my pbc,I have only just got my head around having pbc and now I have this I am so worry about not being able to live my life to the full and a long one. Is there other people that have got both and have for a long time,still living a happy life.i work full time and love my job love being with my family too I would like to see my daughters get married,be a Nan , I am only 48.

thank you 😊

31 Replies
oldestnewest

I don’t have auto immune hepatitis

I have pbc

All I can say is stay as positive and outgoing as possible

Forget if you can you have these diseases

Trust in the professional care available

Ve proactive and informed

All the best

Sarita75
Sarita75
in reply to boneytoys

Hello and i have both as well since 2015 I’ve been on ursodiol 1000mg daily and prednisone 40mg I’m 42 and let me tell you yes it’s very scary st 1st cause it’s both at least for me attacking the live which is the common organ it attacks but like every one has said keep it positive and it’s hard but one day at a time and this is a great site and with a lot of information and keep in mind not every body is the same so not everything will help you but keep up with your blood work and exams and make a list of questions you have so you could be ready for answers and most IMPORTANT KEEP A POSITIVE MIND!!!! Good luck

mjk98
mjk98
in reply to Sarita75

I have both also did you day that you have been in prednisone and URSO for 2 years? I am having a hard time with the prednisone and I want off of it I'll take my chances I can't stand feeling swollen every day hungry etc.. I'm miserable on it I also have stopped taking my Urso these doctors give you all these drugs the minute you stop them the numbers go up I don't know if I can do this the rest of my life I'm also on 6mp drug which out of the 3 is only one that doesn't bother my stomach

boneytoys
boneytoys
in reply to mjk98

My brother is pharmacist and he stresses to me that Ursids is very low toxidity

mjk98
mjk98
in reply to boneytoys

I guess maybe when you take a combo like prednisone, URSO etc.. it can make you nauseous or have stomach issues

Sarita75
Sarita75
in reply to mjk98

Plz be careful getting off prednisone it’s very dangerous it will do more harm than good it needs to taped professional!!! I did it and the itchiness was horrible and my labs went back up prednisone is horrible yes but it’s the quickest drug out there to calm the scarring of the liver and control the pbc!!! Swelling of my face is horrendous and I cry everyday cause it’s not my face and now I’m full of pimple like on my face so imagine and I’ve told my group of docs take me off prednisone but they are afraid too cause of the situation!!!!! Again I can’t stress enough be careful getting of prednisone my friend you might be hurting yourself!!! What I’ve been doing is trying to drink more water and try to avoid lactose and gluten and eat something regularly I’ve noticed my stomach gets very swollen when about to be hungry for some reason... there’s a new medication for pbc in which I don’t qualify called Ocaliva you might want to talk to your docs and get their opinion about but mine group told me no cause of the symptoms and don’t want to risk me but then again recommend to place on trial of the condition with meds not approved yet sort of like wanting me to a a lab rat in which of course I denied!!!! Now I was told by same group and once when I was Prednisone and taped off I went back to normal for about a year or so when I had a remission at the beginning of this year and again back on it regularly now worse than before but one day at a time I’m going to say aug might be my month after my liver biopsy scheduled for 8/31 hopefully I will be taped off prednisone and stick with ursodiol alone.. good luck

I was diagnosed with PBC/AIH Overlap Symdrome in 2011.

I was prescribed steroids (I found Budenofalk (can only be taken if there is no liver cirrhosis) had less side effects than Prednisolone). They then slowly lowered the doze of steroids and introduced Azathioprine (autoimmune suppressant). Once the bloods got back to normal they withdrew the steroids. I was on steroids for about 8 months and on Azathioprine for a further 5yrs with bloods doing fine & in remission for the AIH. It’s all about lowering the inflammation by suppressing the white blood cells./lymphocytes. 2yrs ago they took me off the Azathioprine and I have been in drug free remission since then. I will have to take Urso for life for the PBC. I work part time and find this works for my health. This way I can manage a good work/life balance. Hope this helps. X

Cherry69
Cherry69
in reply to Jtxx

Thank you that has help me a lot 👍

luxe66
luxe66
in reply to Jtxx

Did you gain weight on steroids?

Did you have any other side effects??

Jtxx
Jtxx
in reply to luxe66

Yes I gained a bit of weight but It would have been more had I not kept going to Slimming World. I had side effects with Prednisolone (panic attack’s) but not really any with Budenofalk, however, with both medications, I did have the look of someone who was on steroids as my face had the tell tale puffy jaw line. Hope this helps x

luxe66
luxe66
in reply to Jtxx

Thank you!

I was prescribed steroids (I found Budenofalk (can only be taken if there is no liver cirrhosis) had less side effects than Prednisolone). They then slowly lowered the doze of steroids and introduced Azathioprine (autoimmune suppressant). Once the bloods got back to normal they withdrew the steroids. I was on steroids for about 8 months and on Azathioprine for a further 5yrs with bloods doing fine & in remission for the AIH. It’s all about lowering the inflammation by suppressing the white blood cells./lymphocytes. 2yrs ago they took me off the Azathioprine and I have been in drug free remission since then. I will have to take Urso for life for the PBC. I work part time and find this works for my health. This way I can manage a good work/life balance. Hope this helps. X

Cherry69
Cherry69
in reply to Jtxx

Jtxx

My liver specialist Started me on budenofalk just before Christmas yesterday I went back to see him and there was mentioned about me starting on azathioprine but he said that I would need a blood test to check If i can take them as some people are sensitive to them.

Thank you for your letter of support it did really help me a lot and gave me hope I do hope that you are still doing well and all is good I will keep you inform on my progress If you would like once Again thanks a lot .

Cherry69 Xx

Hi Cherry69

That is a blow and one that I am sure you will get your head around when it has time to sink in.

boneytoys has said more or less what I would say but I would add that a good healthy varied diet rich in vegetables and freshly cooked foods avoiding salt sugar and processed supermarket foods and processed drinks such as cola may be helpful. Avoiding saturated fats may also prove beneficial.

The medication may not be ideal but I think from what I have read at AIH can be treated and the PBC managed which should give you time to do all that you want to and to continue with your work, and thankfully these days the medical profession have a much bigger tool bag than earlier times.

Here is a link from a conversation from a few years back with people with PBC/AIH overlap which you may like to take a look at.

healthunlocked.com/pbc-foun...

I think teddybear7 is still active on this forum and I wonder if she has any new input to help you.

best wishes

Hi Cherry69,

I think, I'm the oldest here having PBC and AIH overlap syndrom. It was diagnosed in 1996. First I took Ursofalk, than from 2006 I have been taking Urso and Immuran. Now I'll be 60. I brought up my only child and since May I'm a happy grandma. I work full time. So be positive, don't give up. I have bad days and good days, as all of us. I keep strict rules: no alcohol, smoked- red meat, just fish and chicken, no fatty - spicy food. Above this I had an accident nine years ago. I had to learn to walk again, I didn't work for a year, but I maneged to handle the situation. Now I take meds for osteoporozis too. My alk. phospatase and GGT are stiil high, they haven't been normal since they were tested for the first time. Of course I have to rest a lot, sometimes it is difficult to prepare lunch for the family, get out of the bed, etc., but all in all I lead a normal life and I enjoy my given time as much as possible. I've tried alternative treatment as well since 1996 but there weren't any changes. For me it is not an illness but a state, I don't think of myself as an ill person. I am different in a way. Be positive! Have goals , take small stepps!

Cherry69
Cherry69
in reply to Dodo8

Thank you that has helped me a lot am the moment I they have not started me on meds but the one that worry’s me is the prednisone as I do not want to put on weight as I have just lost one and half stone and it took me a long time and hard work to get that off + my daughter Is getting marred next year but than you I do feel a lot better and more positive about life .you take care and ok well 😊

Hi Cherry 69 I too have been diagnosed with both Pbc just before Christmas and autoimmune hepatitis just after Christmas , they also thing that I have fibromyalgia, I take urso for Pbc then started on prednisone steroids for hep started on 40 mg a day now down to 7.5 mg some nasty side effects like fat cheeks , mood swings , lack of sleep hunger . The side effects get better ( or you get use to them ) except the fat face 🙄dr then introduced Asa an immune suppression drug . I’m lucky and went into remission quickly and that’s why the steroids have got less , dr said I will be on this dose for at least 2 yrs if my bloods stay good . I get very tired I work ; days a week , if I do to much I just sleep . My daughter got married in may it was a wonderful day and I partied all day but boy did I pay for it ( I should have had a couple of days off work ) I worked a longer day this week , lots of walking in the heat ... came home , ate chips went to bed at 7.30 pm got up 10 an the following day ! Try not to stress take what comes , I live my life as before just take loads of tablets 🙄and rest more ... it’s quite liberating to say stuff the house work ! Good luck x

Cherry69
Cherry69
in reply to Louisethew

Thank you my daughter is getting married in April just announced at the weekend so I am going to look forward to that and try to be more. Positive In life 😊😊

On my 44th birthday, on my way home from work, I was involved in a major auto accident. The accident left me unable to work due to major soft tissue damage. That was in 1997. I was prescribed heavy meds to cope with the ongoing pain and had LFT's monitored regularly. Guess what they found...HIGH LFT's. So after changing me to meds that would be less destructive to the liver, ie morphine and oxycontin, the LFT's still did not change. This went on for many years until I decided I could not live that way. I detoxed from the drugs, and found I could do without them and tried alternative pain relievers which helped a little bit as I grew stronger. Fast forward to 2001. Most rule out tests had been completed and it's biopsy time. Sure enough, they decided by biopsy, LFT's and rule out tests that I have PBC. I'm one of the Urso allergic folks, so I had to look at nutrition seriously. Today, 21 years later, I still have high LFT's, no damage visible on the fibroscan, and systems come and go. I too have lived a life rich with people I probably would have not know if my life had gone the way I thought it would. I never returned to that career. I took the opportunity to re-create me. Some days are better than others...I have down days and good days. There are days I hate this disease and see it as a death sentence, but mostly, I am grateful for what I can do, what I can eat, what I have, and see it as a blessing. Perhaps counseling would be appropriate for you. I learned so much about myself through a wonderful counselor. Over the years there have been many challenges to face. Thyroid cancer, major back and neck issues, a scare with precancerous cells in the breast, deaths of many relatives and friends. My point is this....the human spirit's desire to thrive is strong. We handle situations as they come up. I always have to remember that it could be worse. Might not feel that way at times, but every time I think I'm the only one with issues, or I'm feeling inflated like " I'm all that and a bag of chips", the Universe puts a person in front of me with no legs, or someone begging on the street when it's 110 degrees here in Az. I am way overpaid in the fullness of life. Maybe it's time to get a different "mirror" as yours sounds like it is becoming distorted

Cherry69
Cherry69
in reply to mrspeffer

Thank you so much for telling me about your story I am going to try and be more positive and take each day as it comes 😊

mrspeffer
mrspeffer
in reply to Cherry69

Our attitudes make all the difference for us. Not much else we can control. I use the serenity prayer several times throughout my day. It helps me realize I am not alone.

Hi Cherry

I was diagnosed with overlap syndrome after a biopsy last November. Put on URSO and steroids (steroids increased after a couple of months). After 5 months, most of my readings had reduced dramatically but albumin and alk phos (I think) were still a little high. My Gastro at local hospital contacted Queen's Med Centre Nottingham and discussed my case with Hepatology Dept. I was then weaned off steroids totally as they did not believe they were doing any good. I think there is also some doubt whether or not the AIH diagnosis was correct. New EASL guidelines state clearly that whilst overlap syndrome does exist, there is a sense that it is being over-diagnosed. Anyway, I am being checked by my gastro every 8 weeks or so and already (without steroids) there are improvements in my bloods and LFTs. I have also started to eat healthily and have lost quite a lot of weight fairly quickly. The only negative symptom of coming off steroids is that I am having quite a lot of stiffness and pain in joints and muscles (going for a bone scan in two weeks to investigate - already had RA ruled out with bloods). Still managing to work full-time as a teacher and am looking forward to the arrival of my first grandchild in 8 weeks time. Don't give up hope. Things should settle down when the meds are all sorted. I may have to go for another liver biopsy to double check diagnosis but consider myself lucky to be dealing with this in the UK without having to worry about costs. Hope you are soon feeling better emotionally as the whole thing does take a while to get your head round. Good luck. Jane

Thank you for your reply it nice to hear that you are not the only one out there it has helped me a lot I am going to look ahead,as my oldest daughter announced She is getting marred in April I am so happy 😀 Xx

Ask your doctor to test you for polymyalgia rheumatica finally my regular doctor said I have the marker for that getting a lot of side effects from the prednisone treatment there giving me for the AIh I told my doctor to wean me off of this prednisone but he won't yet so doing it myself I'm really done taking all these medicines and blood tests it's depressing

Hi, sorry to hear you're having an unpleasant time with the pred! How did they get the AIH diagnosis? Did you have a biopsy? Although I was only on the steroids for about 6 months, I actually didn't feel too bad. I was full of energy and the shoulder pain I'd had for several months vanished overnight (I suppose they sorted out inflammation immediately). When they upped my dose, I did get the chipmunk face and, although it seems trivial, it did make me a little miserable. Been off steroids since middle of May and face is back to normal. Aches and pains been a lot worse and constant since ditching the pred - Gastro thinks it is a 'side-effect' of steroids but it seems a bit of a chicken and egg scenario. Whilst Gastro didn't actually say that they think I was misdiagnosed with AIH, he did say that AIH is not the only reason my LFTs might be a bit dodgy. However, when I saw my GP, she said the Queens Med Centre were having second thoughts about the diagnosis. Are you in the UK? Is it worth asking if you are definitely suffering from AIH? You could get a copy of the EASL guidelines as they are fully up-to-date with PBC/AIH information. I suspect you can download them but, if not, contact PBC Robert on this site as he gave me the guidelines at a recent PBC workshop. I hope you are soon feeling a bit more cheerful. Thanks for the advice about poly myalgia - you're not the first person to suggest this - I believe it is also auto-immune. Keep in touch to let me know how you're getting on.

Kind regards

Jane

Yes I had both fiberscan and liver biopsy they diagnosed me after biopsy my numbers are still high I am on the 6mp drug prednisone and I'm supposed to be taking Urso but it makes me nauseous I'm having a hard time dealing with this as I'm getting alot of side effects from the prednisone I'm annoyed with all the medicine

I think a lot of the timeS PBC comes after AIH.

I have both and I’m only taking urso for the moment. my alt is going up from 31 to 41 so dr are suspecting aih flare up tho no any diet restriction or furthers medicine..I’m little worried now and in the beginning after diagnosed..3 years after I live my life drinking parting traveling everything that people like to do😁! Now I do everything in moderate eat lots of veggies and lean protein and few drinks in a week which I should completely stop soon..

Don’t fear but just cautious and try to live healthy life..I’m 40 years old male my intention is retiring at 65 😁🤗

Hi, see if you can get a second opinion to be certain I was diagnosed with the overlap and just didn't feel it was right. Although I was on Prednisone for 3 years then then my consultant wanted to pop me on immunosuppressants which I was not happy about. I asked my GP to refer me to another hospital after advice from British Liver Trust they are really helpful and a lot of research on Internet by me and my new consultant had dismissed AIH I am due to see him on Monday and hope if all goes well with blood results to cut down to seeing him once a year. So it is worth finding out what is going on with your body. Are you in the UK Thank goodness for NHS good luck

Hi, I have both hun. I am still working, I live my life on my terms. I have good days but also some very bad days, but on those days I sleep if I can. I work away from home a lot, my job is event security so you can only imagine what that entails. My recent flare however, had made me stop and rethink matters and I shall certainly be choosing jobs wisely in future. I have found its all about balance...I had this recent flare because I am out of balance....i dont have an equal work to life balance....as a result I became run down, exhausted even. It will all settle in when you understand more about the two conditions....the overlap as it is called. It was difficult at first in that I have had to educate myself, my gp knew nothing about the two together but she has activly looked into it, and now is a real help to me. I will say always listen to your body...if it says I am crashing and you need sleep then believe me when I say you need to sleep...also be very pro active when it comes to medication....research every single thing. I take a drug called mercaptopurin which is an immune suppressant medication, basically in AIH, our immune system thinks our actual liver is a foreign body and attacks it directly, and damages it, like with the PBC, that attacks the bile ducts in the liver. It's usual for someone with AIH to be put on these immune suppressants, usually the first one they try you with is called azathioprin or imuran. I was allergic to it so they put me on the mercaptopurin. Also need to mention that prednisolone steroids are another medication used to treat AIH...I am not fond of them at all, but they have their place. And I will say listen to your consultant, but remember there is always choice...and theres always room for discussion on every aspect of your care. It's not easy at first but everyone on here are a minefield of information, as is PBC foundation itself also the British Liver trust have tons of information available. You can speak to someone if you ring pbc foundation or British Liver trust.....and they will answer any questions you might have if they can. I know its a lot to take in but its manageable when you get your head around it. I am 6 years in and still learning but I am coping. Take care hun xxx

I’m sorry about your diagnosis. I have pbc and aih for 3 years. I’m ok for now. It is hard to except at first. What medications are you taking

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