Auto immune hepatitis

[guineapig1]

Was diagnosed with auto immune hepatitis 8 months ago and my employer is asking me when I can return to work,I don't feel I can as I am on immunosupressants so have to be really careful about infections ,however I work in a busy doctors surgery full of disease !!! Can anyone advise what I should do?? Thanks

[sillybilly]

Hi guineapig1

I was diagnosed with auto immune hepatitis , primary biliary cirrhosis , ulcerative colitis , and underactive thyroid about 3 yrs ago . I don't think I will ever wake up and and feel normal again . I work for the nhs as a nurse on a very busy care of the elderly ward , I probley take more tablets than the patients, I a also prone to picking up infections , I think it depends how you feel in yourself ,as regards of working. Some days I don't feel to bad ,but some days I cannot drag myself out of bed. You need to do what is best for yourself , which is easier said than done. I hope you have the support of family and friends , my hubby and boys think because the the housework is done ironing , cooking ,cleaning, shopping etc that I am ok and there is nothing wrong with me oh god how I wish that was true . If you want to chat pls pm me . Take care xx

[guineapig1 in reply to sillybilly]

Thanks,have been doing the odd hour at work and can't cope mentally but my employer does not understand and leaves me to get on with it,have had no support,have been told I would be better of if they made me redundant but they won't,I can't afford to leave as have no partner to support me but am not willing to risk my health anymore,feel really stuck,thanks for replaying

[sillybilly in reply to guineapig1]

I feel for you that you are on your own, it's hard accepting that you have any sort of illness,. Our health should be top priority . I am on a reduced hour , return to work at the moment , but it's been very hard , I used to work nights ,but I am on days at the moment and finding it quite hard to cope. I don't want to risk my health ,but am in a situation that puts me at risk, but cannot change jobs because I have been working for the nhs for 20 yrs and let's face it ,who else would give us a jobs with our list of illness . So we just plod on regardless . All I can say is chin up ,and take care . And if you want a private chat pm me . Xx

[jenniwren]

I think it depends on the individual and how you are managing the AIH. If it is under relatively good control and your levels are pretty stable work will be tiring but not impossible. The risk of infection is one you would have to discuss with your consultant and occupational health team. I was diagnosed at 13 and my AIH has never been completely under control. I have always worked but find that when I overdo things, I am more prone to picking up infections. you will need to learn to listen carefully to your body and take time off when you need it. Again, this is something to make Occupational health aware of as so many places only allow you off for sickness on a few occasions before they issue earnings and make you feel like you are taking the mick! All in all, I would say your best course of action is to discuss returning to work and how feasible it is with you consultant, make sure they write anything down for you that will help and then speak to your employer. All the best. Jenni x

[guineapig1 in reply to jenniwren]

Thanks for your support,what is this about occupational health,I know nothing about it ? I see my consultant monthly but he doesn't tel

l me anything except my blood test results,i'min there for about 5 mins and that's it,thanks

[Bolly in reply to guineapig1]

Some employers are large enough to have Occupational Health departments, not sure if something like a GP practice where you work would be big enough, probably not. But presume you have a practice manager? For most people with AIH its the fatigue that makes it difficult to hold down a full time job. The risk of catching more infections than normal once on immunosuppressants doesnt always happen - I've been on them for a few years and not had any significant infections. I work in healthcare and reckon I'm more at risk shopping in the supermarket or on a crowded bus than through my work. Can you discuss a phased return to work with your GP practice, where you come in for a few hours to begin with and then build up gradually?

[chris2591]

The advice already given here is very good advice.In terms of your treatment its quite early days.I was diagnosed in sept 2010 and my consultant is still trying to stabilise my Aih.

I did not return to work initially although I did take on some temporary work later on, but this resulted in a flare. I am fortunate that my husband is completely supportive and my family now recognise when I am not doing so well. Its important that people understand how this affects you especially your employer.The main issue I have found is that people dont know much about aih even gps and so its important to be clear about the risks to your health.

I was worried like you about being immune suppressed and working with the public but have not had any other illnesses apart from the odd cold.

However, you are going to be in contact with sick people and you are right to be concerned.I would suggest that you do as others here have suggested abd get informed advice before making any decision about returning to work.

Remembr your health is the priority and itvwont help you or your employer if you get ill again and cant go to work.

Good luck

[Hidden]

All the advice here is good. I was diagnosed with AIH 18 months ago when I ended up in hospital with jaundice, but immunosuppressants (mercaptopurine and hydroxychloroquine, I also have lupus) are keepings things under control and I have continued to work full time. Some days I feel terrible, others completely normal. I was worried about getting infections as a result of immunosuppression but so far, like chris2591, have had only the odd cold, despite working at a university where I come into contact with lots of coughing and spluttering students. I have a flu jab every year, I think this is important.

I don't think anyone without a chronic illness really understands what it's like and no-one seems to have heard of AIH (outside medical circles). You just have to make sure your employer knows about your illness and also that you are followed by Occcupational Health, who will fight your corner for you. Good luck!

[Alley27]

Hi, I am also on immunosupressants having autoimmune hepatitis overlapping primary biliary cirrhosis. I expect you are taking azathioprine, I was allergic to that and take mercaptopurine instead but I still am immunosupressed. I was so frightened at first when I began taking this medication but I don't let it stop me doing anything. I am unemployed but wish I could be working but at age 50 and with these two nasty little friends I am very limite; to have a job these days is in some ways a privilege.

You can explain to your employer about your situation being a gp surgery there are precautions for health and safety. I would try to work, ensuring that my hands are cleaned thoroughly using the alco rub, I would also ask if I could possibly take a seat further away from the reception desk. Employers are expected and required to make adaptations for their employers with health concerns and disabilities.

Vitamin C is also helpful to us .

Kind regards

conniefused

[chris2591 in reply to Alley27]

Conniefused hs made an excellent point about your employers responsibility to make reasonable adjustments for you, and this could include finding you a role which is more suitable for you. Perhaps you could ask for a meeting to discuss the situation.

[guineapig1 in reply to chris2591]

My employer has made no adjustments for me,have been told I would have to go back to my original job as it is not fair on my colleagues,I don't really know what my position is,do you know anyone who could advise me ? Thanks