Has anybody else got this condition that is willing to discuss their treatment and how they are coping with this disease?
I have been living with AIH for 14 years, first diagnosed when i was 14 years old. Luckily I am fairly stable with the odd flare up now and again. I am being looked after by the Queen Elizabeth Hospital in Bham and they are brilliant. Currently im on 50mg of Azathioprine a day and its brilliant with no side effects. I have been on Prednisalone in the past and ive not got on well with it. My doc keeps mentioning the possibility of me having to go back on it in the future but I dont like the side effects.
I am a busy professional who has no time to be poorly, so fingers crossed my Azathioprine continues to do its job!!
Hi Cathy, very interested to read your comments I was given Azathioprine which made me really sick and feeling generally rough for about 3 weeks after I stopped them, my ALP & ALT levels went sky high when I was on them, just 3 days after stopping them my levels dropped by half, this has now put me off any Immunosuppressants as I am nervous that I may react badly again,the only down fall is that I am to remain on Steroids (which seem to agree with me) although the dosage has now been reduced to 7.5mg daily. You seem have had the opposite reaction to me with the treatment. My AIH was only diagnosed last year as an overlap with PBC but usually I feel well, I have noticed that if I sit and take things easy I feel worse as the day goes on, so try to keep active as much as I can mind you I am considerabley older than you. I have heard that the hospital in Birmingham is really good so you are in good hands. Good luck. Regards Barbara
Hi kathy I have autoimmune hepatitis too. Was diagnosed 9 months ago. I've been on prenidsolone ever since! Can't seem to get off it without having flare ups. Also taking 100 mg of azathioprine which I've been on for 16 weeks. Weaning down my prenidsolone again slowly. Hopefully if I can get off steroids lose my moon face and feel normal again . The azathioprine seems to be working well .
Hi Janet, I was on combined Prednisalone and Azathioprine for just under a year before I could start weaning myself off the Prednisalone. I hope that you will be able to come off the steroids soon. I find that 50-100mg Azathioprine is perfect for me and touch wood I haven't had a flare up for over 5 years now. Luckily once your body gets used to the medication it's a disease that can be very easily managed. I find that staying positive also helps a lot. Do you mind if I ask how old you were when you got diagnosed? They think that the disease is linked to hormones... Would be interesting to know what on earth triggered it in the first place. Cathy
Hi,I was 62 when I started with the condition. A complete shock! Just retired from work. I had an ear infection and was prescribed fluxocillin and ibuprofen, I had 2 courses of these straight after each other. This was my trigger the consultant said. I feel well most of the time, had one flare up at Xmas .im down to 20 mg of prenidsolone now from 40. Have bloods taken weekly and consultants Appts 4 weekly. Apparently my immune system attacked my gall bladder first. Then started on my liver! I knew something was wrong when I turned bright yellow! Waiting to have my gall bladder removed but surgeons waiting until my steroids finish. Having to take it really slowly now reducing steroids as when I get to 10 mg I get really horrible sickness and liver discomfort. I think I will be reducing in 1 mgs from now on. Yes I'm a positive person and tackling my condition head on, there were women in hospital far worse than me! Hope you are well . And nice to hear from you. Not many people know about this condition. Do you find it a pain having to explain what's wrong ? Even to professionals? As soon as you mention liver people think you are a raging alcoholic .
Haha yes I find it really annoying. I feel like I'm instantly defending myself!! Nobody understands enough about the condition, not even the professionals. Its interesting that your doctor told you your ear infection/treatment was a trigger.. i was told it was a hormone imbalance. i guess we just need more research into how to reverse the immune system from attacking our own organs. It's great to hear from you too, hope things start to get better for you soon! Take care, Cathy
Hi Cathy, I'm from Australia, saw your post. I was diagnosed with AIH about one month ago, took the drs a loooong time to sort it out. Now on Prednisilone and AZA which I have just commenced. I want to have some teeth removed, before the immunosppresant really kicks in. The specialist said would be ok, but the dentist said to double the dose of prednisilone for the day of the extraction. Don't know what to do now. I'm inclined to believe the dentist at this stage. Thank you for your post. There's not a lot known about AIH in the general community. I find the work hepatitis scares people off a bit, they think "infection" and catching! Hope we can all keep in touch.
Hi Helen, thanks for getting in touch. Sorry to hear you also have AIH. It's a very complicated one, I know what you mean about the word hepatitis. I now just tell people I have an autoimmune disorder, where my own immune system attacks my liver. I would be wary about doubling the dose of Prednisalone, it's not one to mess with as it can have side effects. I have had lots of work done to my teeth, wisdom teeth out whilst being on AZA, no problems at all. I would stick to your specialist advice. Hope it all goes well, having teeth removed is never fun! Lucky you being in Oz, would love some sunshine right now! England is cloudy and rainy most of the time!
Thanks Cathy, no its been too hot here in Oz this summer - not fun at all!
Whilst on that subject, the pahrmacist told me AZA makes one sensitive to sunlight. Guess this would be ok in the UK, but here it could be a problem as I see a side effect of AZA is skin cancer. I'm still a bit nervous about it all, but good too know you have not had any trouble getting out teeth. Maybe I'm being overcautious.
Can anyone describe what their flare ups are like? My own GP just looks at me when I describe symptoms that I believe are flare ups. I don't think they know much about it at all! I would be interested in symptoms as my flare ups may mot be flare ups. I wait to hear from someone so I can affirm or not.
Hi Helen . I have ahi and have had a flare up recently. I had exactly the same symptoms as when I was first taken ill. Sickness.dizzy.tired and my blood results were really bad.liver function poor, I can only describe my own flare up, others may have different symptoms. Gastro doctor said blood tests show when a flare up is happening. I hope this is helpful to you. And I hope you are feeling better.
Thanks Jane, I get red spots on my arms and legs like small blood blisters, but not raised like a blister. Yes and a bit tired. Was wondering, guess we are all different. This is a new field for Drs I think.
Hi Ladies....I am also Brit/Aus......6 months ago my water turned a browny colour which urged me to seek medical advise...to cut a long story short after GP doing blood tests my liver functions were all high Alt 1400 ASP 1100 and so on, he was treating me for Viral Hepititis and after weekly blood tests for period 3 months my LFT's were all just about back to normal.....just to confirm his diagnosis he wanted me to see Specialist in this field, so after another couple months of further blood tests , the 4 tests on Antibodies 3 came back negative and 1 positive, so he sent me for Liver Biopsy...
After visiting him today, he has diagnosed me with AIH.... What worries me is apart from the Urine being discoloured (now back to normal) I haven't had any other symptoms, no jaundice, no nausea , no nothing......so now he is putting me on 50 mg Imuran and 25mg pried and the latter being reduced hopefully to 5mg in 3 months....I am really frightened at beginning this medication as I feel so healthy at the moment, but after reading all side effects from medication I would hate to feel ill due to this. Trouble is, if I don't take the medication the outcome would probably end up worse than what it is! I understand my level is moderate he mentioned a figure 2 (whatever this means) your thoughts would be appreciated.
Hi my 14 year young son has AIH, he takes 40MG prednisone, 100MG Azathioprine. He suffers Bloating most nights sometimes during the day, he sufferrs pain in his back around liver area,tiredness. He has Hyoscine Butylbromide 10mg 4 times a day for stomach pain, he has also been put on omeprazole 20mg twice a day to protect stomach from all his medications. He takes Ibuprofen and paracetamol once -twice a day. One of his Doctors has put him on Gabapentin 300mg three times a day because apparently he should not be in all the pain he has so now they are trying to tell us its in his head,I do not believe this, my son is intelligent and has been a sporty boy all his life, he can not play sports now because of pain and tiredness. They have also sent him to a Psychologist which has only made him angry every time we go near the hospital for his weekly blood tests and consultation. My sons bloods have gone down and up and down and up the Docs have decreased Pred and now increased pred and Azath how can they say he has no pain while his bloods are up and down and his little body is so bloated from chest down to thighs and his face. He has gone from 38kg to 46kg in weeks obviously stretching all his skin and making him self concious and miserable. Can anyone else back up his pain experiences
Hi Hazel,we got told my son Keifer has 4+ damage to his liver after his biopsy but we dont know what that means? I feel for you I am watching my 14 year young son go through this stupid AIH disease and I really hate filling him up with nasty drugs day after day and not being able to make him feel any better we have no control over what is happening to him, I dont believe the Docs know enough about what he is experiencing either Best Wishes for your journey.
Hi Ladies we got told our son possibly got AIH from being in contact with CMVirus which he tested positive to we dont even know what that is.
Hi Cathy
i have had autoimmune hepatitis for slightly over a year and am currently taking azathiaprine at a low does with, thankfully, no side effects. Initially I was prescribed budesonide instead of predisolone to manage acute stage. I also had no side effects. Budesonide is now quite commonly and successfully used for AIH and has less side effects than predisolone . You could try discussing this with your Doctor.
kind regards
Chris
Hi My Son is 16 and was diagonosed in July this year. He is now on 5mg prednisolone from 40mg and 100mg aziathioprine. He has just increased his dose of omoperazole to 40mg a day due to 4 weeks of sickness and even anti sickness pills are not working and he is still being sick. He has also suffered from bad stomach pains on his lower right and left side under his rib cage which was tender when examined and he ended up in hospital with the pain but as blood tests showed no infection or appendicitus they said it was must be muscular as the conditionautoimmune hepatitis isn't painful, even though when my son first showed signs of this he was jaundice and had bad pain in his liver and spleen area which was very tender when touched. That pain eased after 4 weeks and he had 1 week of feeling well then the sickness and twisting stomach pains started. After 2 weeks we went to the doctors and he said it was the medication and increased the omoperazole but the liver consuntant said it wasn't the meds it was probably just a virus. After 3 weeks of sickness and tiredness I tried to get an out of hours doctor appointment only to be sent to A& E wherethe Dr told us he would need a magic wand to make him better and that it was expected that the meds would cause sickness and tiredness and he would just have to put up with it. He has now started with with the runs as well as the sickness so i'm taking him back to the GP tomorrow as its now been 4 weeks and its heartbreaking to see him having to suffer but its equally heartbreaking when we keep being told there's nothing they can do or making out he's not in pain.
Hi hazel..i was diagnosed with this condition in august...all the symptoms youve described that your son is having is exactly how i feel...i was taking 30mg steriods & 50mg of the azth..my steriod intake is now down to 15mg n still 50mg of azth..everyday i am in pain..like your son..just below the rib cage n really bad stomach cramps, i went to see my doctor few weeks ago n due to go for a scan, touch wood i havent been sick but the feeling is there, i take my azth at night because within n hour im so so tired i could sleep standing up..hope you n your son get some answers of your doctor..let me know how you get on...many thanx
Hi Marie, My sons sickness, runs and pain stopped at the weekend and he's been feeling well. He saw his new consultant today and he said it is a common side effect of Aziathioprine and it normally lasts 8-9 weeks till your body is used to it which ties in as he's been ill 9 weeks and he's been on them about 11-12 weeks. He recommended he takes 20mg of omoperazole in the morning and then 20mg in the evening as it stays in your system 14-15 hours so doing it this way will give your stomach 24hours protection. He also said its ok for him to take the prednisolone am and the aziathioprine pm if this helps the sickness etc I hope this helps and your pain eases soon