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Date: 08.08.2011
From: Catherine

Subject: New and need advise

I was diagnosed 15years ago with an auto immune disorder. It has many facets some being crohns disease, liver disease, Inflammatory arthritis along with ankylosing spondylitis and RA. Some of you may think they are one and the same, however I am currently confused what it all means. I was on steroids 10mg for about 10 years and this kept everything under control. Then I had to come off steroids, went on Humira injections, was fine until this created problems with crohns, so now on Infliximab infusions, however I am currently experiencing major flare up, never had before and not sure what to do. Rheumy says start sulfasalazine after having LFT's and Inflamm markers checked but can't start because LFT's levels are out of the park as are inflamm markers. Use of a lot of meds limited because of liver disease. Have been in bed for a week, Pain ++ from shoulders through to toes. Sometimes legs and arms feel like someone poured lead into them they are so heavy and so painful. Taking 20mgs preds and this seems to help about 8hours before everything back again. Is this all normal? I don't feel that I was ever told just what a "flare up" would involve. ADVICE PLEASE XX
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Date: 08.08.2011
From: bsk

Subject: Re: New and need advise

In your shoes I would ring the hospital and talk to the on-call rheumy registrar or your consultant. This is what I do in an emergency and it sounds as if you are bad. My hospital are very good and either give me advice over the phone or call me in to A&E for treatment. If you can't cope at home, tell them, they might bring you in for a few days til you get stabilised. Don't do what I did in the early days, which is suffer at home in agony unable to move for weeks. Please :)
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Date: 08.08.2011
From: Catherine

Subject: Re: New and need advise

Hi bsk, Thanks for response, at least it makes me think I am not over reacting. I am in Australia and as such we have a system where I have a Consultant. I have left a message for him as well as emailing (his preference for making contact) Have not heard back from him in regard to repeat blood tests, despite the fact that I know he would have received results by now. Either they are still high and he is not sure where to go from here or what he has given me is it and it is a case of "suck it up sweetheart" I will take your advice and make contact again tomorrow as you have given me the confidence to know that I am not asking for too much. Thank you for caring
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