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Finally I have a diagnosis....

Posted , 5 users are following.

Sparkler1971
Sparkler1971

I have inflammatory bowel disease, only took me almost 4 years for docs to confirm what i already knew, the GI doc wont confirm 100% that its UC as I have a sister with chronic crohns but he is swinging more to UC and i have started a course of 4mg of pentasa a day, if things dont improve by the weekend i have a course of prednisolone to take over a six week period, does any one have any experience of how quickly pentasa takes to kick in as i was only prescribed it 3 days ago and i already feel that it has made an improvement to my condition today, i really want to avoid the steroids if i possibly can, any thought would be much appriciated.

0 likes, 12 replies

12 Replies

  • Pindie68
    Pindie68 Sparkler1971

    Posted

    Hi I've just been diagnosed with UC. I'm on 4.8g of Azacol a day and a tapering dose of steroids. I started on 50mg but when I got down to 20 mg my symptoms became worse and I've been put up to 40mg again. The Azacol did nothing in it's own. We are all different so you may have to try different combinations until you improve.

    • Sparkler1971
      Sparkler1971 Pindie68

      Posted

      thanks for the reply, i hope your meds get your symptoms under control soon, i know that over the next few months its going to be a game of what meds work the best to contol my symptoms, but im just relived to finally be given any sort of meds as ive been in a flare for 6 months with nothing at all and no one taking my symptoms very seriously.
    • Sparkler1971
      Sparkler1971 Pindie68

      Posted

      stress from work, buying my home and the fact i gave up smoking are what i believe triggered this flare, the GI doc confirmed that smoking can mask the symptoms of UC and he sees many patients who have had no problems untill they give up.
    • rachelle52846
      rachelle52846 Sparkler1971

      Posted

      Hi Sparkler1971

      I had UC for 11 years if pentasa works for you and the flare is under control then hold off on the steroids I was on pentasa for 10 years I also stopped smoking then fell pregnant and I also got a major flare was on prednislone for 6 months side affects were bad and for me never worked amongst the other mess .. I had to have surgery in the end but I hope the pentasa works for you good luck x

  • cjb106
    cjb106 Sparkler1971

    Posted

    I was diagnosed with mild to moderate UC just over a year ago and my consultant's standard treatment for me is 30mg Prednisolone plus 4g Pentasa Mesalazine per day to get diarrhea and bleeding under control then tapering the steroids at 5mg per week. If things hold then ongoing maintenance dose is  2g of Pentasa per day. I have had one flare since then (possibly caused by antibiotics prescribed for something else) so had to take the steroids again. As I flared while taking Pentasa it clearly wasn't enough on its own while the steroids do control the symptoms very quickly. However, last time I saw the consultant he made it very clear he did not want me to have to take steroids for any further flares because of the potential long term side effects and wants me to try Azathioprine next time although that isn't without its dangers. However (and if I could type with fingers crossed I would) I stopped taking Pentasa four weeks ago as I was tired of it making me feel dizzy so I am currently completely drug free and so far I'm clear of UC symptoms. I mention this as when this illness presented itself a year ago it followed a period of intense stress caused by a difficult personal relationship. I am now free of that and feel so much better emotionally. Physically not 100% as I think my adrenal function isn't back to normal after the last lot of Prednisolone but I am hoping that this horrible illness really is in remission.

    • Pindie68
      Pindie68 cjb106

      Posted

      I'm generally well so this has been a real shock for me. My dad died suddenly in April and at the same time the company I work for was bought out and as the manager I had a lot in my plate. My consultant told me that I'm a tough cookie but that was probably the problem. Not dealing with emotions will cause the body to take over instead. Because I haven't had time to grieve he said my body is taking the toll. Anyway it's the middle of the night and the insomnia and sweats have me awake again. Hopefully I'm on the mend this time.

    • cjb106
      cjb106 Pindie68

      Posted

      My condolences on the death of your father. Sounds like you have had a tough time. Doctors don't seem to know why people get UC whether it's triggered by bacterial or viral infections or as a result of other drug treatment. I suspect mine may have been the latter plus a nasty bout of food poisining but I am in no doubt that the stress I was under tipped the balance. I do get awfuly tired in the daytime but oddly feel full of energy come nighttime and also have trouble sleeping. I've read that this is a symptom of adrenal insufficiency following steroid withdrawal. Hot flushes too.

    • Pindie68
      Pindie68 cjb106

      Posted

      Thank you. I feel ok most of the time but this sweating isn't a good look. Plus the chipmunk face. I'd make a real catch!!!! I really hope this inscreased dose of steroids helps. I don't would to take the immune suppressants.

    • cjb106
      cjb106 Pindie68

      Posted

      By chipmunk face do you mean what I call moonface? I find that goes away pretty soon after the steroids are reduced.
  • Rymbo
    Rymbo Sparkler1971

    Posted

    Hello

    I found Pentasa takes a few days to kik in . But they do work well from both ends. I was on two pentasa supps a day for 15yrs until about 8 months ago and they kept it all at bay till it spread. On 4g a day pentasa oral as well as asa and foam and im resuming normal life for the moment.

    Saying that , they all work differently for different folk.

    Prednisolone can leave you feeling pretty crap but they do work well so dont get put off by the steroid stigma.

     Its trial and error for what your body can cope with meds wise. 

    Hope the pentasa works for you and stay positive.

     

  • Sparkler1971
    Sparkler1971

    Posted

    Thanks for all your comments on how the drugs have worked for you all, im on day 4 of using pentasa and im having my best day by far than i have in the last 6 months, ive had no bleeding today(so far,fingers crossed!!)and only one trip to the toilet, usually i would have been at least 5 times by now! so iv decided i will hold off taking the prednisolone and give the pentasa a few more days to do its magic, if things dont continue to improve then ill start on 30mg and tapper by 5mg a week of the prednisolone.
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