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  1. CeeCeeGo

    Can flu cause a flare?

    Had proper flu & pleurisy just before Xmas. 3 weeks before getting flu had loading dose of Ustekinumab. Had first 8 week injection of Ustekinumab. Two weeks after first jab starting to flare and FCP test went from 93 at 8 weeks to 300 at 12 weeks. Consultant decided to give an additional...
  2. CeeCeeGo

    Stelara - First 8 week injection after infusion

    Hi everyone - some advice please I am due my first injection this week (8 weeks after my infusion). Just wondering if it is OK to postpone it for a week or two as I am getting over the flu and still don’t feel 100%. I know going forward once you are on a maintenance dose that you should not...
  3. CeeCeeGo

    Infusion side effects - advice please

    Hello Had my infusion about 2 and a half weeks ago and it was 520mg (as I am a big girl!). I also had been tapering off Budesonide just before the infusion and this was my third course of steroids in a year! Felt OK first week. Second week to now loads of joint/muscle pain all over my body...
  4. CeeCeeGo

    Stopping Humira & withdrawal symptoms

    Hello I was taken off Humira 6 weeks ago (having been on it for 2 years) as my new consultant thought it wasn't doing anything. He put me on a reducing dose of Budesonide for 3 months before I start a clinical trial. My question is to anyone that has stopped Humira - did you have any...
  5. CeeCeeGo

    Happy Holidays

    Hello to all Wishing you all happy holidays and a healthy 2017!
  6. CeeCeeGo

    Drug interaction - Budesonide & SSRI's?

    Hi I have just come off Humira (after 2 years on it) and now am on a 3 month reducing dose of Budesonide before I start a clinical trial. My question is I think I need some medical help with the anxiety and my GP is talking about prescribing an SSRI. Are any of you (or in the past) on...
  7. CeeCeeGo

    Combined antibiotic therapy v Budesonide trial

    Hello all I have had Crohns for 4 years (diagnosed) and have been on Humira for the last 2 years which now appears to have stopped working (although levels are fine and no antibodies), I have recently moved across country and have met my new IBD consultant today at the Royal Liverpool Hospital...
  8. CeeCeeGo

    Advice for long car journey - moving home & flaring!

    Hello Haven't been on here for a while..... Well, in 2 weeks I am moving to the other side of the UK - from the NE to the NW. I started flaring about 4 weeks ago and have been on Entocort 9mg a day for 3 weeks. My FCP came back at over 300 and tests for infections were fine. The Entocort...
  9. CeeCeeGo

    Humira and Listeria infection

    Hello I started Humira about 5 weeks ago - had 3 doses so far. When the nurse came to my home to train me, she went through all the things I had to avoid whilst on this drug. She mentioned the danger of Listeria and told me that I should not eat certain foods such as soft cheeses, pate...
  10. CeeCeeGo

    Starting Humira - any tips & what about side effects

    Hi everyone I am due to start Humira in the next week or so having reacted badly to most other CD meds - so I am hoping that finally I can find a med that keeps me in remission. Any tips please about where to inject, using ice etc. Also interested in side effects as I have suffered really...
  11. CeeCeeGo

    Domperidone - GI's advice not to take any longer than a week

    Hi everyone Just returned from seeing my GI today and he has said that there has been recent guidance in the UK not to take Domperidone (aka. Motileum) for any longer than a week. He didn't say what could happen. Has anyone seen any guidance in the last month or so about this? Or heard...
  12. CeeCeeGo

    Methotrexate didn't work for me

    Well it was 4 months of hell and finally yesterday my GI and I decided to stop the MTX poison that I have been injecting for the last four months. I thought it may be helping a month or so ago when I had 10 days of 'normal' poos but the last two weeks have been hell - loads of the big D, 4 day...
  13. CeeCeeGo

    Methotrexate & caffeine?

    Hello I am starting Methotrexate injections this Friday and my doctor has told me to avoid alcohol and caffeine as they may worsen the side effects. I knew about the alcohol but caffeine aswell!! Has anyone here had worse side effects from caffeine whilst on MTX? Thanks.
  14. CeeCeeGo

    Starting Methotrexate & worried about vomiting

    Hello Saw my GI today and we have agreed to start Metho injections - 10mg (first week), 15mg (second) & 20mg (third). Also 1 x 5mg folic acid 2/3 days afterwards. I recently had a FP test come back at 300ug/g where three months ago it was 31ug/g. As my bowel perforated unexpectedly last...
  15. CeeCeeGo

    Stressed, feeling really low & crying a lot

    Hi guys I haven't been on the forum for a while as I have really been struggling with stress the last few months - work related and also still trying to come to terms with this disease. I have really low mood and am crying all the time, for no reason whatsoever. I dropped a bag in the...
  16. CeeCeeGo

    Why do I have a solid poo in the morning followed by loose urgent poos for the rest of the day?

    The title says it all. This is a fairly recent change for me - the last few weeks. But it is starting to affect my confidence about going out as I am never quite sure when I am going to need the loo and if I do it will be urgently. I am wondering whether to start taking Imodium or Psyllium...
  17. CeeCeeGo


    I totally agree with Scottsma - at this time try not to think too much about the future - just take each day as it comes and appreciate the good things even the really small things like someone smiling at you or thanking you. Do you have a song/piece of music/poem/passage from a book that...
  18. CeeCeeGo

    Mini flare & feeling stressed

    Hello guys Just need to vent. I have just had the best 7 weeks (in terms of my BM's) since my surgery last July and I am waiting to start 6MP once my liver has righted itself (it reacted to Imuran/Aza). I got a really bad cold a couple of weeks ago and this last week has been horrible - bad...
  19. CeeCeeGo

    Taking 6MP after bad liver tests on Aza

    Hi everyone Wondered if you can help? I had to stop Aza after 3 weeks due to my liver function tests being raised even though I think it was maybe starting to calm my bowels down. I also had severe headaches, stiff neck and nausea. I am keen to try 6MP before any other med but wonder whether...
  20. CeeCeeGo

    B12 injection side effects

    Hello I have just had my first B12 injection this morning and this evening have had quite bad diarrhoea - the last few days I have had solid BM'S. Has anyone else noticed any side effects of these injections?