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Advice about biologic please

Posted , 7 users are following.

louisep
louisep

Hi,

I was diagnosed with ulcerative proctitis 5 years ago initially but didn't get any follow up appointment after my colonoscopy. I have since had 2 more colonoscopies and am experiencing a 3rd flare up that has been going on for 12 months now. I've now got a specialist and nurse who are looking after me. I've tried all sorts of different medications including 5asa and prednisilone steroids. I have either bad reactions to the 5asa and limited success with steroids so I'm now looking at a choice of biologic medication. I'm aware of some of the side effects but have to decide on self injection, Humid a, or hospital infusion, Remicade. Can anyone who has experienced these types of medications give me some idea of their success and pros and cons re their side effects. I'm very confused about which method to try and want to make as informed a decision as possible.

Thank you for reading this and I look forward to any help and advice you can offer.

0 likes, 22 replies

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  • millie1986
    millie1986 louisep

    Posted

    Hi Louise sorry to hear about this

    I am similar to you however I only had a flexible sigmoidoscopy which they said was UC now they want to get nvestigate firther incase crhones.

    I was on mezaline 1g per day inserted through you know where!

    They have now have me salofalk foam who h is uncomfortable but is working!!!!

    Don't know anything about your meds but you could try these!! Take care!!

    • louisep
      louisep millie1986

      Posted

      Hi Millie

      Thanks for your reply. Salofalk was the first type of medication that I was prescribed by my specialist. It was a bit of a shock to me how it had to be administered I have to say! Unfortunately the side effects were terrible, horrible stomach gripes, sickness, headaches and dizziness. I coped with it for a week before I had to go back to my GP for an alternative. I've tried Asacol suppositories also with crippling headaches and sickness. I only managed 2 doses of that before I gave up. I also tried oral 5asa too but they had little or no effect and when I upped the dose I got the same problems, It seems that I can't tolerate 5 Asa at all. I am ok with prednisone but apparently they aren't a long term maintenance therapy. I've also tried an exclusion diet which made no difference at all. So here I am, about to take something that I've been told comes with a whole range of possible side effects. If it knocks it into remission and I can tolerate it though, it will be worth it I'm sure.

    • millie1986
      millie1986 louisep

      Posted

      Wow... That's not good!!!!!! How long have you had this?? It's completely rubbish but knowing people are in the same position does kinda make things slightly easier

      Well if one thing I could say is this this forum is good for talking to people but I've added a lady on facebook and we chat now and again its a bit better as it can get a bit depressing which isn't good for your UC!!!x

  • rj69947
    rj69947 louisep

    Posted

    Hi Louise 

    I was diagnosied with UC Protitis in Jan and have not stopped bleeding since 19.11.14!! Tried Pentasa 1g rectal but gave me chest pains made me feel awful BUT ibd nurse says it can't cause symptoms dispite listing them in the leaflet!!  Just finishing 2 weeks of Pred supps 10mg at night and sadly still bleeding they are saying another flexi sig and maybe steriods again but nothing set in stone sad can you let me know how you get on as this illness is making my life pure hell.

    Also pred supps talk about anxious and increase in pulse rate, again ibd nurse says not possible again it's in the leaflet!! 

    • millie1986
      millie1986 rj69947

      Posted

      Hi just wanted to say I've had Bon stop bleeding and heavy clots since last September! My medication does seem to be working

      still bleeding but not as much take care x

    • rj69947
      rj69947 millie1986

      Posted

      Bless ya hun it's a right one this flipping illness, I hope they come up with something soon for us xx
    • millie1986
      millie1986 rj69947

      Posted

      Thanks rj

      It's really took its toll on me

      I'm 29 fit and healthy and now all of a sudden im never away from the docs and the hospital .. Very fed up but just faced the facts this is life and I need to deal with it

      I hope things are ok for got and you get on the right meds

      Take care of yourself x

    • rj69947
      rj69947 millie1986

      Posted

      You too hun as a 48yr old male wearing panty pads to visit hospital is not nice sad and it's the worry of ibd nurses and cons that don't believe ya side effects!!  Hope we get into remission soon hugs hun smile x
    • louisep
      louisep rj69947

      Posted

      Hi RJ

      Sorry to hear that you are having problems too. It seems to me that the side effects of all this medication seems to make the whole illness much worse. I've been tempted to chuck the whole lot in the bin at times. Of course then it could all flare up out of control so I keep taking the meds as I'm advised.

      I'll let you know how it goes with the next lot, whichever I end up with. In the meantime good luck and make your nurse listen to you regarding the side effects you're experiencing.

      Best of luck

    • rj69947
      rj69947 louisep

      Posted

      Thxs hun you too it's so good to be where we can all give/get advice and folk know what we are going through smile
  • zoev2004
    zoev2004 louisep

    Posted

    So sorry to hear what you're going through. I haven't been properly diagnosed yet but UC Is suspected so im to a le to comment on meds at the moment.

    just wanted to let you know that all of us here understand what you're going through xx

  • jordana16652
    jordana16652 louisep

    Posted

    Hi all,

    I was diagnosed with ulcerative colitis just last October and immediately started on oral Octasa 1200mg daily. Soon after I had a huge flair up, my GP mentioned a hospital admission. But thankfully 2 weeks of prednisolone sorted it.

    However I have since had another flair up and decided to stop taking my medication as it's clearly not working. Although I have constant bleeding, the pain appears to have settled on it's own.

    I'm still awaiting a follow up appointment following my diagnosis but have heard nothing. It is a very frustrating condition to have, but we can all relate to how your feeling

    • louisep
      louisep jordana16652

      Posted

      Hi Jordana

      It sounds like you've had a really rough few months. It's really frustrating waiting for that first consultation with a specialist but if your hospital is anything like mine once you're in their system you'll hopefully have more support. I have an Ibd nurse who I can call if things are bad and she really knows her stuff. I'm currently on not only prednisolone but also bile salt treatment. I'm not sure which has improved my symptoms but bile salts seem to be a more obscure type of treatment. So please don't give up yet. It's still early days since your initial diagnosis but hopefully you'll have a much more positive opinion once they have seen you and I really hope you find something that suits you.

      I'm due to start biologics in a few weeks I believe so I'll post my experiences of that. Having said that, since having all the info given to me at my last appointment, as I said earlier, this flare up is now subsiding! It sometimes feels like my body has a mind of its own and has been frightened into remission!

      Good luck and I hope you get an appointment soon x

  • zoev2004
    zoev2004 louisep

    Posted

    I am very new to this and I teally hope you don't mind if I ask a question.

    Many of you say that you are bleeding constantly. Do you mean all of the time or when you go to the toilet and open your bowels? I bleed when I open my bowels or feel like I want to and yet there's nothing there but blood and mucous.

    Generally I'm not bleeding unless i go to the toilet (apart from when I had a bad flare a couple of weeks ago).

    How does this compare to what you all expereince?

    Sorry if this is too personal. Hope I haven't offended anybody by asking x

    • millie1986
      millie1986 zoev2004

      Posted

      Hi Zoe

      Sorry I don't mean im bleeding and need to wear pads or anything

      I just mean ive had blood every time I go to the toilet

      I've learned not to strain as much when going to the toilet and this has helped with my bleeding for sure as in it's not as heavy or as much

      I'm still getting blood and mucus but nowhere near as bad as what it was

      Hope this helps x

    • rj69947
      rj69947 zoev2004

      Posted

      Hi Zoe for me when I go to the loo to pass a stool or wind I bleed and can have mucous and clots of blood in, sometimes if I pass wind I can have a tiny amount of blood on a lady pad I wear, hops this helps, R (male 48yrs UC Protitis) smile
    • louisep
      louisep zoev2004

      Posted

      Hi Zoe

      What you have described is exactly the same symptoms I have experienced. A persistent need to go to the toilet, mostly mornins and late afternoon/evenings and then passing blood mucus etc.

      I sympathise with what you're experiencing. It's both worrying and frustrating if nothing you try seems to work. What is your Dr or specialist suggesting you do to get this under control?

      Good luck and hope it improves for you soon x

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