I have been diagnosed with auto immune hepatitis a few weeks ago. Any help welcome!

[donkeymad]

[jenniwren]

Hello Donkeymad

I also have AIH. I was diagnosed 13/14 years ago so feel free to ask any questions and I'll see what I can do to help.

Jen x

[ocean_1234 in reply to jenniwren]

how do you handle this condition?

[AyrshireK]

You will also find much help and mutual support and advice on the auto-immune hepatitis forum at supportaih.websitetoolbox.com/

All the best, Katie

[donkeymad in reply to AyrshireK]

Thanks x I have found that website. I just feel all at sea with this. Have been off work weeks and cant imagine what the future will be. I'm rubbish at coping without a plan but have to learn to ajust/accept I guess

[donkeymad]

Thanks! Just finding this last night has calmed me down. Am currently on high dose of steroid and have cramps on and off to hands and feet. Having read some of the post s last night, am stocking up on bananas today. .any other suggestions?

[AyrshireK]

Obviously you've got such a new diagnosis that no wonder you are all over the place. We still feel a bit that way a year and a bit on from diagnosis, hubby has cirrhosis caused by an auto-immune condition (never formally identified) and we are only just hopefully going to get some plan of action in place .. we are now seeing the liver team at the liver transplant unit, earlier we were only seeing local gastroenterologist but hopefully at our next consultation we will learn what the Doctors plan is for the future, everything just seems to take so much waiting and we haven't seemed to have gotten anywhere since diagnosis.

My advice would be to ensure you get all the information you need from your consultant, don't wait and wait for stuff to come if you feel results,appointments etc. aren't coming through then PUSH for them. If you want a 2nd opinion from Docs them PUSH for it. You'll read it a lot on here but you do need to OWN your own health care, it is a pain when you are ill but if you've someone to help and support you then together PUSH for whatever it is you want, feel you need etc. etc. Whenever you go to appointments it is helpful if you've a friend or relative to go with you that way 2 pairs of ears hear the answers and you can discuss and digest what was actually being said later .... I often pick up what the doctors say and more importantly mean when they say things which hubby often misses. Before going to any appointments make notes about your symptoms, any changes, any questions which you want to ask that way you make the most out of your consultation and don't come away thinking "oh I should have asked that!". Don't be afraid to phone consultants secretary in between visits if something changes as they'll get you in if they think it is something significant. We've written when we've wanted to chase stuff up, that way it is print and in your notes.

This forum is an absolute goldmine of information and I've never experienced any negativity on it, everyone is really great with their support and advice and i'm sure you'll get a lot out of regular visits here.

I hope you get your AIH under control, many folks once the drug regime is in place seem to do really well.

All the best, Katie

[donkeymad in reply to AyrshireK]

Thanks so much for your help and advice katie.i think I just need to slow my brain down a bit! My partner comes to appointments and we are writing questions down etc.a few weeks ago I was virtually bed bound but now the steroids have kicked in im having to be careful not to get carried away. Im still exhausted at times but my bloods are improving. Weekly monitoring then onto azathioprine if all goes well. Thanks again

Penny x

[ocean_1234 in reply to AyrshireK]

thanks so much

[AyrshireK]

I think i'd be right in saying most liver patients have tiredness so some degree, my hubby is just lethargic all the time and completely lacks any drive, he has terrible sleeplessness at nights though he also has anemia. Since diagnosis he's only had treatment for his oesophageal varices and isn't on any medicine for the liver .... as it's progressed already to cirrhosis I guess. Hopefully once the doctors have got the right balance of your medicines you'll do great.

Take care Penny and all the best.

Katie xx

[findasolution]

Hello Katie,

Hope hubby soon starts to feel better and regains some of his energy and from your various posts it seems he is making some good progress.

There is something in your reply to Penny that caught my attention and that is your comment hubby isn't on any medicine for the liver. If it were me and certainly because I am not a doctor or medic I would ask consultant to provide me with a reason for this! I too have cirrhosis and like with your hubby autoimmune hepatitis was the underlying cause. My own consultant has told me that despite the fibrosis having developed into cirrhosis it is still essential to keep treating the underlying cause and I still take immunosuppressants and a small doze of prednisolone as well as have regular LFT's apparently with the aim of keeping under control as far as possible the progress and worsening of the cirrhotic scarring on its path to causing liver shut down. Presumably that is why they also advise people with AL Cirrhosis to eliminate the underlying cause i.e. to abstain from alcohol and when they do they usually feel a little better. You will also know from your contributions to the AIH Support Group forums that many people on there have have suffered cirrhosis for a long time and most of them still take medication for the liver There is also support for the approach in fairly reliable docs /publications such as the one you can access using the following link.

patient.co.uk/health/cirrho...

I hope you do not mind me mentioning this but as there seems to be so many different approaches to the way liver disease is treated it may just be worth asking the question even if for peace of mind.

I imagine hubby would just love to be out there again taking part in his LDWA events and that kind of lifestyle is something I too really miss. If only this dratted disease had stayed away!

Regards.

[AyrshireK in reply to findasolution]

Hi again 'findasolution' we have a big consultation on 15th October when hopefully the liver unit docs have decided what they want to do from hereonin, they only took over his care in June and since then the priority seems to have remained his varices - hubby has recently had another ultrasound and a colonoscopy with biopsy (looking for what might be causing his anemia), liver consultant has been doing his endoscopy & banding and has blood tests taken so hopefully she now has a better idea of what is going on with his liver, we hope she now has the full picture and can progress on. Sadly all we've been told is that it was an auto-immune condition but that sadly the biopsy they took in April 2012 provided too small a sample of the liver to say whether the damage was done years ago by a single event and is now dormant or is still active. I have asked before about treatment and been told they didn't want to give unnecessary medicines which the liver would then have to break down but if the thing 'flared up' he would get put on medicine and would then perhaps be considered for transplant. We HOPE that we will get some answers at the appointment in October so will have lots of queries for docs then.

Thanks for your support, yes hubby would love to do more than a local park stroll his LDWA and his own long, long holiday treks were his life and mentally it gets to him that he needs bedrest even after a short stroll. Such a cruel illness especially when it sneaks up on you without you knowing you are so ill.

Katie

[Hidden]

I was diagnosed about 15 months ago. Like most I was put on high dose of Prednisone (60 mg), then tapered and added Immuran (azathioprine). Now I am down to just 2.5 Prednisone and hopefully will be off it soon. I am just telling you this so you know there is hope. I feel normal most of the time but I do get tired a little more easily than I used to. My advice, in addition to taking the drugs your doc prescribes of course is: make your diet a top priority. Eat super healthy - doctors won't necessarily tell you this. A little more carbs and less protein and all the vegetables you can, especially beets. Dandelion greens too. And try juicing - I think that has helped me. Take alpha lipoic acid (good for all autoimmune diseases) and have your vitamins/minerals tested and correct any deficiencies with supplements - you will have deficiencies because of the meds. Don't drink ANY alcohol, not even half a glass. And do something to control stress (yoga, meditation, whatever). Good luck.

[donkeymad]

Thanks so much for advice x Im dealing with the diet didn't think about testing for deficiency though. I've only ever drunk the occasional glass so that's the easy bit for me. The hardest thing is not knowing what the future holds. This really came from nowhere, so still very shocked, and finding it difficult to not look too far ahead. Are you back working? If so, , what point in the drug regime did you manage to feel able?

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