Prednisalone reducing problems?

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Hi I'm new to the group I'm just after a bit of advise. I was only diagnosed in April with UC after a nasty flare. After a week of IV steroids I was sent home with predisalone I'm currently half way through reducing my dose (20mg) and have noticed symptoms are getting worse (Loose stools, joint pain red/ sore eyes).

I started asacol 400mg x6 about 3 weeks ago as things were seeming to improve but now I feel like I'm going back to square one! Im waiting for my consultant to call back this afternoon I was just wondering if anyone else has had a similar experience? Thanks.

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  • Posted

    Hi em, really sorry to hear your joining our club that no one wants to belong too! The joint pain thing could be related to that maybe you have early stages of Arthiritis? The two are linked together i was diagnosed with UC and Arthiritis and they put me on Sulfasalazine which does for both, not sure about the sore eyes though.Also do you that there is a possible link to developing UC and packing up smoking! Have you ever smoked? This disease is awfull and can catch you unaware at any time make sure you carry spare undies with you and some wipes. I keep with me them andrex washlets flipping lifesaver they are, and make yourself aware of where all the loos are when your out and about. Dont be ashamed of what you want to ask on this web site, we have all messed ourselves through lack of control. Anything you need to know just ask as someone on here will know or point you in the right direction. Really sorry you are with us.

    Thanks Terry x

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  • Posted

    Hi there!

    I loved Terry's concept of 'Welcome to the Club that no-one wants to belong to'. So true!

    Because UC is an inflammatory disease, it does lead to inflammation in other parts of the body - and that can include the eyes. I believe that for many people the 'associated' inflammation does tend to subside as the UC goes into remission. 

    The trouble is that this is a very 'individual' disease and people will experience differing symptoms, different causes of flare-ups and how to manage them. You'll need to learn how it affects your body.

    I am very fortunate in so far as my UC is at the moment (touch wood) being well controlled with mesalazine (Octasa) and I have never needed steroid treatment.

    Have you looked at the Crohn's and Colitis UK website? That has plenty of useful information on both diseases.

    Terry's advice is great; get used to carrying a 'travel pack' with you. Mine consists of spare underware, socks and trousers, a loo roll and moist wipes.  It's a chore, but if you get caught short (and as Terry says we all have - I certainly have on more than one occasion), you'll be so grateful you had the foresight to 'be prepared'.

    In a nutshell, UC and Crohn's are horrible, life changing diseases; there's no getting away from that and as many people say, 'I wouldn't wish it on my proverbial worst enemy'. It would be lovely to think that cures are just around the corner, but unfortunately that isn't the case. One day, maybe, but at my age of 62, it won't be in my lifetime, I fear; I hope and pray that it will be in yours.      

    Keep positive and I send you my very best wishes for a healthy life.

    Peter

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  • Posted

    Hi Em

    I have had colitis since 2012, & had repeated courses of prednisolone since, with the same worsening as you come down on the dose. My gastro consultant tried me on several meds that are supposed to get colitis into remission & maintain. I have had sulphasalazine, pentasa, ipocol, & am currently on balsalazide since november 14 with success. As you have only been diagnosed in april, it may take a bit of finding the right med to keep it under control; what works for one person doesnt always suit another. However 3wks on asacol is not long in the world of colitis - it usually takes longer for your "everyday" med to work. from personal experience I would think you need longer on the asacol to see if it is going to work for you, & longer on the prednisolone at the same time to give the asacol a chance.(higher than 20mg-I found about 30-35mg hit the spot for me during a flare) Do keep an eye on your stools, as one of the meds I was on ipocol (similar to asacol) I had partially intact tablets coming out in my stools which indicated they werent being absorbed properly. good luck, take care

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  • Posted

    Hi Em I to was recently diagnosed with UC and have the same issue as you, i do carry an emergency kit in the boot of the car as i have come close a few times and as you backwards and forwards to hospital and doctors and yes hopefully it will come to a point of remission, stick with this forum as there are a great bunch of people on here that can help you with any questions etc.

    hope you get sorted soon

    thanks

    John

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