Azathioprine side effects (worried!)

[Charlie_B99]

Hi, I’m 17 and I’ve only recently been diagnosed with Autoimmune Hepatitis around 8 months ago. It’s been a bumpy road but at the end of the day at least I actually have a diagnosis and my treatment has been extremely responsive. However, as I had elevated IgG levels and autoimmune hepatitis is said to be a life long disease requiring life long treatment, I’m quite scared about my life in the future with the risk of getting leukaemia and myeloma?

[Hidden]

Hi Charlie,

Thank you for sharing your story, we recognise that it is a very stressful time when you are diagnosed with a chronic condition.

We do have a useful publication on AIH, here is a link

britishlivertrust.org.uk/in...

Please do note, that legally, all our information is for adults over the age of 18, so we would also suggest you could contact the Childrens Liver Disease Foundation who may be able to offer additional support

childliverdisease.org/

Very best wishes

Trust1

[Maureen_2018]

Hi Charlie, I'm so sorry to hear of your diagnosis at such a young age. I'm at the other end of the age scale and was diagnosed with Autoimmune Hepatitis 4 years ago in my 50s. I was very ill at the beginning, spending 2 weeks in hospital while they ran tests ruling out various other potential diagnoses until they settled on AIH. I was put on a reducing dose of Prednisolone which fairly quickly went down to 5 mg daily until February of this year when I was fitted in for a review scan just before everything shut down owing to arrangements for hospitals around Coronavirus, and my Pred was further reduced to 2.5mg daily. 2 years ago my Consultant tried to introduce Azathioprine, but my system couldn't cope with it. I was constantly sick within an hour or so of taking it every time. I persevered for a few weeks, but it wasn't practical to continue. I've simply continued with Prednisolone and have been absolutely fine on that throughout. I take an Alendronic Acid tablet once a week and Vitamin D tablets twice daily to counter the side-effects of the steroid which can inhibit absorption of calcium affecting bone strength. I suspect that's more a concern at my age that yours, but I don't know for sure. Everyone is different, however, and other people have experienced the opposite reactions to me, feeling better on Azathioprine than Prednisolone. I would recommend that you check out another group that I joined following my diagnosis - AIH (Autoimmune Hepatitis) Support UK & Ireland - you can find them via Facebook or just Google it. There are people of all ages on there who have AIH and could offer you more advice. I was able to return to work, at first on a phased part-time basis, about 2 months after my diagnosis and then returned to full-time work about a month after that. I do still get bouts of tiredness, but really its about finding the best way of managing the symptoms that works best for you. I have to say that I haven't had to compromise my life very much once I got to grips with managing the AIH and the medication. Life pretty much returned to normal for me - but I'm not 17!! I hope this is a wee bit helpful anyway. Good luck and look after yourself. Maureen (Kilmarnock, Scotland)

[AyrshireK]

Hi Charlie, if you do Facebook there is an excellent AIH support group on there (it's a closed group so none of your other contacts will see what is posted). Group is nearly 2500 members strong - with members of all ages or who are older now but diagnosed as youngsters. Group is supported by some of the top doctors in the UK who are working in the field of AIH research and treatment.

You'd be sure of a warm welcome there and can get support from patients who have been through the whole AIH experience and many who have lived with the condition and the medication for many years.

Find us over at:- facebook.com/groups/AIHorgUK/

Katie

[Woo4pdc]

Hi Charlie

I am sorry to hear that you have joined our exclusive club at such an early age, chin up life goes on

I am 57, I was diagnosed with AIH about 12 years ago

It was pretty frightening to me as a mature man, it must be even more devastating for someone of your age,

I have always kept fit playing sport which thankfully aided my recovery at the point of diagnosis

I was told that my liver function test should have been between 0 and 47 on the scale, my score was 1275 (slightly high) for saturation, I was given 3 months to live if I didn't respond to treatment, too poorly for a transplant and going in to multi organ shutdown

The NHS consultants at Exeter treated me with the urgency that it required quickly reducing my levels, I spent 5 days in hospital, initially with a high dose of steroids and then a slow swop over to Azo,

I have been stable for a while now but have had 2 flare ups along the way, "night sweats" were my most noticeable symptom, I contacted my support team who arranged for blood tests and reviewed my medication to reduce my levels again

I count my self lucky in some respects as I have not had to make any "Life style changes"

I am more careful with how I approach Life and more sympathetic to others

Cancer is a concern especially skin cancer I have been a sun worshiper most of my life enjoying the great out doors and having had some wonderful exotic holidays, I now use factor 30 sun screen and still enjoy the sea or pool applying protection more frequently

I have had 3 Liver Biopsies, each time they have come back with some inflammation so I remain on treatment as recommended by my team

I was also fortunate responding to treatment quickly, hopefully in your case having youth on your it helped, and with a bit of luck you might not need life long treatment some people are able to make a full recovery including coming of medication

If I can offer one bit of advice it would be to listen to the specialist and follow their guidance

take care stay safe and all the best for the future

Pete (Teignmouth Devon)

[Charlie_B99]

Thank you everyone who has replied, it helps me to hear about all of your different experiences. . I’ve been on the Azathioprine (125mg) and Prednisolone (5mg) dose for around 6 months and I’ve not had any side effects at all. My liver function results from monthly tests are great so I count myself very lucky at the moment. I wish you all the best and thank you again for replying.

[camelswin in reply to Charlie_B99]

Hi Charlie

I am at the other end of the scale to you and was diagnosed in 2008. Azo makes me feel ill so my consultant changed it to mycophenolate which is ok. I take 7.5mg of prednisolone along with calcium and omeprazole. It will be a long haul for you because of your age the best you can do is listen to your body. Take care