1st flare up in two & half months after stabilised on infliximab infusions !

Hi , everyone ... not been on here for a while - dont worry not forgotten you :-)

Im a bit gutted as im just going through my 1st flare up in ages due to my infliximab dampening every thing down , caught me on the hop really. Forgot that you can still have flares - just spaces them out & takes the kick out of them .

Oh well back to using the steroid cream and mouthwash ....hey ho Lol

8 Replies

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  • How often are you having your inflix? I was exactly the same but getting very ill in between treatments,and they moved mine to every 4 weeks and I have found that is what has started to help me alot more,I still get mini flares in between but not as bad.maybe you could see if they would if you are not already? hope you feel better soon,hugs and loves xx

  • Hi , missrosie ... Thanks for your advice .. I'm getting mine every 8 weeks now .. Next one is due on 10th dec in Liverpool . I'm doing ok thanks .. Hope your well too :-)

  • Hi, BD seems to have a habit of doing that. Just as things seem to be going well..BANG!! out of the blue things start to go wrong again. Hope you get on top of your symptoms and get well again soon. Hugs Clare x x

  • Thanks Clare x

  • Hello Hugh. I have been having infliximab for about three years, but I occasionally get mini-flares. Luckily they don't last as long as before, and they are not as severe. When my infusion spacing was every 8 weeks like yours, I was most certainly not so well, and so I have been put back to 6 weekly. This has improved things no end. is there any chance you could speak to your consultant to see if they could reduce the time? Good luck. Hope things improve soon, Suzanne. x

  • Thanks Suzanne , when I get a chance I will discuss it with the Proff .. :-)

  • Hi Hugh,

    My 11 year old daughter was having 8 weekly Infliximab but due to viruses that then led to almost a constant 10 week flare, now on 6 weekly. I hope this improves. Now been in hospital 4 months this year. I now she feels rotten but this week is a good week, my fingers and toes are crossed it continues for a wonderful Christmas.

    I hope you feel well soon.

  • Awe .. Your poor daughter , so horrible to get it bd that young .. I'm 45 & find it hard sometimes .. All my best wishes to you guys .. Hope she's flare free for as long as possible :-)

    Bye

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