Two Weeks After Finishing Prednisolne, I Start to Flare Again



Jan from UK fullIntroduction:

I am 62 years old and now retired from a stressful job as PA to the Head of Housing for a London Council. I have been divorced for 30 years and have two wonderful children and three adorable grandchildren. I have been with my lovely partner for 18 years now.

Some more about me:

I am into DIY – my partner and I made a good team when we purchased and renovated our house in Essex. He did all the major things like electrics, plumbing etc and I did all the decorating. I love spending time with my family who would describe me as dizzy, nutty and loving. I enjoy socialising, walking, gardening and sewing.

Symptoms:

I am trying to get over a major flare I had over Christmas and the New Year, with the aid of Prednisolne.

My Story:

I was diagnosed with ulcerative colitis in November 1999 and have taken Sulfalazine 2 x 500 mg daily. I had a few slight problems over the years, but nothing major. My last colonoscopy was in May 2012 as the result was Pan colitis – in remission. However in December 2012 I started to flare, but unfortunately because I had not had any problems for years and had forgotten the initial symptoms, just thought I had a diarrhea bug, which was going on a bit too long!

My GP prescribed me Prednisolne 1 x 5m for one week, but unfortunately that was not enough for long enough and it spiraled into a major flare just over Christmas.I had been back to my GP thee times in one week just before Christmas and was told to continue taking the meds and I would feel better. I had to attend A&E Boxing Day night where I was kept in for 12 days being released with Prednisolne 8 x 5m per day on a gradually reducing course.

The reason for my flare up was identified by my consultant as I had stopped smoking on the insistence of my GP as she informed me after a chest x-ray that I had COPD,which freaked me out. However, after a lung function test it turned out I had had a chest infection, nothing more. The stress I experienced had caused a major flare up.

The problem now is that the flare up was so severe, two weeks after finishing a reducing course of Prednisolne, I start to flare again. I have had four courses so far this year and my consultant now wants to put me on an immuno suppresent Azathioprine. I am very anxious about this, as from the information I have been reading on the internet, the side effects are horrendous. Is anyone taking this and how has it been for you?

My family and partner are wonderful and really supportive, but at the moment I feel like I will never be myself again. Normally I am buzzing around doing this and that, but now I am generally tired, emotional and have very little interest in anything.

Medications/Supplements:

I took Sulfalazine 2 x 500 mgs daily for the past 12 years. The only problem I had with it was the white blood cells, but this was generally sorted with iron.

I have had Prednisolone when flaring and think this is wonderful. Made me feel great and dealt with the bleeding and BMs. However, the side effects are not at all good.

written by Jan

submitted in the colitis venting area


20 Responses to Two Weeks After Finishing Prednisolne, I Start to Flare Again

  1. Gee September 28, 2013 at 6:54 am #

    I came across this via a UC page on facebook, i have had a similar situation to yours having 3 courses of prednisolone this year between March and July/August and i was put onto Azerthiaprine around May time, i spent around a month in hospital around 3 weeks after starting the Azerthiaprine as they take around 8 weeks i think it was to take effect and this is when i was given my 3rd reducing course of steroids, i read all the side effects of Azerthiaprine both on the leaflet that came with them and online and like you was very anxious about taking them but i was told that it was pretty much that or things get worse until needing an op to remove the lower bowel so i figure i may as well give them a try, the side effects can’t be worse than the pain etc from UC.

    For me at least i’ve suffered no side effects at all, the only problem i’ve had is with aches and pains from coming of the steroids so i personally would highly recommend you go with them, worst case scenario you come off them due to side effects and take a different route, hope this helps :)

    • Jan from UK
      Jan September 29, 2013 at 1:54 am #

      Thank you Gee for your experience. It certainly makes me feel more confident about taking it. Like you say, the side effects can’t be worse than the pain of UC!

  2. steve lorand September 28, 2013 at 10:56 am #

    my wife got uc after she stopped smoking in 1998. she’s presently tapering off prednisone, she’s down to 5 mg per day and she’s having Remicade infusions which may be helping her get off the prednisone. But so far I think it’s the SCD diet that se’s on that is helping the most. I’ve been on the diet along with her just for support and I can feel the calming, sedating effect it has had on my system although i don’t have uc.

    • Jan from UK
      Jan September 29, 2013 at 2:11 am #

      Hi Steve, thanks for your comments. I definitely feel diet is a very important to sufferers of UC. What a supportive husband you are to be on the diet with her, must make her feel better and as you say, doesn’t do you any harm either.

  3. KimberlyHI
    Kimberly September 28, 2013 at 12:32 pm #

    Hi Jan! When I quit smoking in 2000, that is when my first UC symptoms started. I still don’t smoke now, but any extra stress I have triggers a flare. I have been on Azathioprine and my side effects from it were acne and my hair was falling out. I hope you feel better soon!

    • Jan from UK
      Jan September 29, 2013 at 2:16 am #

      Hi Kimberly, thanks for your comments. I wasn’t aware acne was one of the side effects, although I had read that sometimes your hair can fall out – how awful for you. Will it grow back again do you know? I am really looking forward to feeling better and back to myself again.

      • KimberlyHI
        Kimberly September 29, 2013 at 4:39 pm #

        Oh my gosh my face broke out big time, and so much hair was falling out I was having to declog my drains every 2 weeks. It was noticably thin. It took awhile but it is growing back. Not everyone will have these side effects though! I had to wean off that medication and started taking remicade which has helped a lot. The meds can be scary but when you’re sick enough you start to just want to do what it takes to get better!

  4. Liz Newton September 28, 2013 at 1:05 pm #

    Hi Jan, sorry to hear about you situation. I have been in my third flare-up in twelve months after being diagnosed with UC a year ago. After two months of flaring my doctor agreed to let me try prednisone after Asacol was not working. I’ve only got a week’s prescription and, like you feel so good that the urgency and blood are calming but I realise this is just a short term fix. I’m combing the specific carbohydrate diet with the medication and am going to stick to it in the hope that, like Adam (website founder – big-up, man:) this is the road to healing. I’m thinking positively and getting rest as much as I can (hard with two pre-schoolers and on my own) but going to bed really early. I am praying that it works and that you and all UC sufferers get better.

    • Jan from UK
      Jan September 29, 2013 at 5:15 am #

      Hi Liz, sorry to hear about your situation also. Must be very difficult with two pre-schoolers, particularly on your own. I also raised two children on my own, but thank goodness, I did not have UC then – mine hit when they were all grown up.I have just been reading Adam’s Meals for Colitis and his story and it has given me new encouragement, that maybe I can manage this with the diet and my present medication – and maybe end up medication free also. I am going to try hard to resist having to have the Azathioprine. Unless people have UC, they cannot understand the misery is causes. Good luck to you Liz.

  5. uma September 28, 2013 at 7:10 pm #

    Taking a good Probiotic along with sulfasalazine and folic acid will help.
    That is what i did and am in remission for a long time.

    • Jan from UK
      Jan September 29, 2013 at 5:20 am #

      Hi Uma, thanks for your advise. Do you also follow the specific carbohydrate diet? How does the folic acid help? I have just started using a probiotic, which I had never thought of before, but the good bacteria really does make sense. Well done – fingers crossed it will work for me also.

      • Jan from UK
        Jan October 3, 2013 at 1:58 am #

        Hi Uma, what probotic do you take?

  6. Phil October 2, 2013 at 5:35 am #

    I had a major flare in Jan this year, which hospitalised me for 2 weeks. My toilet visits peaked at 24 times in a 24 hour period. It seemed losing my colon was the only option and the surgeon briefed me on what was oing to happen. I was on steroids at he ime and they were having no positive affect at all. Fortunately my Gatro specialist wanted to try one more course of action. He prescribed Infliximab and gradually I started to improve. I was discharged from hospital a few days later and put on Azathioprie. It made me unbelievably tired all the time and also made me nauseous. I was taken off the Aza and put on Mercaptopurine. I have been flare free for 7 months now. However due to eing on immunosuppressant I’ve managed to pick up some infections which have made me poorly for a few days at a time. That said I would not be without infliximab as the benefits outweigh the negatives. I am also on olsalazine 2g per day.
    Have you discussed infliximab with your specialist or IBD Nurse?

    • Jan from UK
      Jan October 3, 2013 at 2:06 am #

      Hi Phil, sorry to hear of your experience. No my consultant has never mentioned infliximab – what does it do? I have decided not to take the Azathioprine my consultant was offering me and to try and get back on track with my current medication with the help of the specific carborhydrate diet and probotics. I had never heard of good and bad bacteria until I joined this website and it certainly makes sense. I strongly feel this is an approach worth exploring.

  7. Don
    Don October 2, 2013 at 11:52 am #

    Hi Jan. This condition really does steal your life. I have been battling it for 7 years and have had 2 major flares which resulted in 5 day stays in the ICU. I recently started to flare again even though I was on the SCD. The diet really helped at first but after awhile I started having problems again. I was absolutely strict and a total believer in the SCD. I need 60mg/day of prednisone to curb a flare. My current GI put me on a quick taper schedule going a week at a time from 60 to 30 to 15 to 10 to 5 and then 5 every other day before stopping. That was too fast and I started having diarrhea and bleeding again so I adjusted and began a -2 1/2 mg per week taper. That helped a lot as I am down to 15mg/day. I also take Lialda 2x/day and maybe that is also keeping me steady. I am eating anything I want now and not having any problems. I plan on doing home fecal transplants starting next Tuesday. I have been preparing my system and feel ready to start this. I am hoping it will cure me. If you want to read my blog about it you can check it out here http://donmakowski.blogspot.com/2013/08/name-is-don-makowski-and-i-decided-to.html
    Others have had success with it.
    I hope you feel better soon.
    Don

  8. Jan from UK
    Jan October 3, 2013 at 2:16 am #

    Hi Don, I read your blog – what a real rough time you have been having.Glad to see you are getting back on track with Lialda – have not heard of that. What are fecal transplants? They sound major serious! Thanks for your good wishes, I am certainly tring to get on track.

  9. Phil October 3, 2013 at 3:27 am #

    Hi Jan
    Infliximab suppresses the body’s immune system The immune system attacks the colon and causes inflammation which leads to a flare. The downside is when the immune system is suppressed it leaves you at the mercy of infections. To be fair though in 7 months I’ve only had 2 infections, both in the stomach which was unpleasant for 24 hours

    • Jan from UK
      Jan October 3, 2013 at 4:37 am #

      Hi Phil, that sounds like the azathioprine my consultant wants to put me on
      – the problem is it takes months to work and the side effects are dreadful.

  10. Phil October 3, 2013 at 5:11 am #

    It works alongside infliximab. My Gastro specialist put me on both. The aza didn’t agree with me so he swapped it for Mercaptopurine. I would ask your specialist for more info. Alternatively you can research it on the Internet.

    • Jan from UK
      Jan October 3, 2013 at 5:26 am #

      Thanks Phil I will.

Leave a Reply

No matter what, colitis flares don't last forever, don't forget it:)