Crohns / ulcerative colitis sufferers
- Thread starter ColdAsIce
- Start date
I tried Infliximab but I had a bad reaction to it which apparently is rare. It was my last med to try before surgery. It’s meant to be very good if it works, I have heard of people on it that have been in pretty much complete remission for years. You just need to be careful around sick people.
Hope which ever one you choose it works well for you.
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Cheers buddy. I'm 99% fixed at the moment and I'm pretty sure another course of Pred will sort the last 1% but they are hesitant because of my first course being so long (I got lost in the system and was on Pred for well over 12 months)
Soldato
Did you develop shortness of breath?
I had a reaction whilst they were giving me the infusion. Started being sick and shaking they stopped the infusion gave me something and kept me in hospital overnight. I was ok after a few hours of stopping. Dr said it was just not for me….
Pred works wonders but buggers you up in the long term. You tend to need higher doses the longer you have used it. My Dr said that my dose just before surgery was more like a horse dose as nothing was working anymore. Definitely chase them up this time so they don’t leave you on it longer than needed. I had around 3 years on it and it’s left my nervous system in a right bloody mess.
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Soldato
Sorry to hear that.
My adverse reaction was developing shortness of breath, due to the hospital losing funding during my treatment, for a year, during which I must have developed antibodies.
Sorry to hear that.
Wait what?
Your treatment stopped for a year because of lack of funds then restarted and it no longer worked?
Soldato
- Joined
- 11 Sep 2008
- Posts
- 2,637
I'm so fed up of this illness, I've just finished two courses of treatment of Prednisolone, Salafalk Foam, Octasa and a suppository that I can't remember the name of, This combination used to work for me, but this time my symptoms have just got worse, I visit the toilet at least 15 times a day and pass mostly blood, when I do pass anything else it hurts so much that I actually scream out because of the pain, this is new for me never had this before during my while journey with this Illness.
I wonder whats next for me.....I can't carry on living like this, my life currently revolves around going to the toilet, I constantly feel tired drained, Eating it no longer enjoyable because of the unbearable pain from a mouth full of ulcers and have literally no motivation to do anything
I wonder whats next for me.....I can't carry on living like this, my life currently revolves around going to the toilet, I constantly feel tired drained, Eating it no longer enjoyable because of the unbearable pain from a mouth full of ulcers and have literally no motivation to do anything
I'm so fed up of this illness, I've just finished two courses of treatment of Prednisolone, Salafalk Foam, Octasa and a suppository that I can't remember the name of, This combination used to work for me, but this time my symptoms have just got worse, I visit the toilet at least 15 times a day and pass mostly blood, when I do pass anything else it hurts so much that I actually scream out because of the pain, this is new for me never had this before during my while journey with this Illness.
I wonder whats next for me.....I can't carry on living like this, my life currently revolves around going to the toilet, I constantly feel tired drained, Eating it no longer enjoyable because of the unbearable pain from a mouth full of ulcers and have literally no motivation to do anything
Have you tried biological treatments ? I had surgery and tbh it was the best thing I have had. I have a bag now but it’s so much better. It’s worth considering if it’s an option too.
Biologics are my next course of treatment.
Its terrible at time isn't it mate. If you need to vent I think were all here for you.I'm so fed up of this illness, I've just finished two courses of treatment of Prednisolone, Salafalk Foam, Octasa and a suppository that I can't remember the name of, This combination used to work for me, but this time my symptoms have just got worse, I visit the toilet at least 15 times a day and pass mostly blood, when I do pass anything else it hurts so much that I actually scream out because of the pain, this is new for me never had this before during my while journey with this Illness.
I wonder whats next for me.....I can't carry on living like this, my life currently revolves around going to the toilet, I constantly feel tired drained, Eating it no longer enjoyable because of the unbearable pain from a mouth full of ulcers and have literally no motivation to do anything
I've spent the last 12 months in the spare room as it has an ensuite that I can just about get too if I have a middle of the night episode.. Struggling with any erm.. Special time with the Mrs, as I feel like I'm gonna fart mucous etc at any point.
Just waiting for funding to be approved for biologics.....
Anyone know how much it actually costs...
Soldato
Hang in there till you're on biologics.
They cost thousands but you shouldn't have to worry too much on NHS; but they need to be able to fund you every year. If you're as bad as you say, you should be high priority for funding. But the difference once you get on them is huge.
Many years ago i had funding cut for infliximab because i was doing oknonnit after a year, and predictably i relapsed for the worst when they stopped it. I always wonder what coukd have been if i had stayed on it.
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I'd pay that to get my life back...... It' costing me more than that in having to put extra staff on to cover me when I can't get out
I take it you are not living in the UK?
No, I'm in the UK.
My point about costs was that I'd pay to get the treatment now rather than wait for them to approve the funding.
Sorry, this must be a thing in England? If there is a treatment that they can try then you should be placed on it. Are you sure the specialists are not ruling out non biological treatments first?
I think we've exhausted the Non Biologicals now, They are looking at Bio's as AZA doens't seem to be working after 3-4 years.
Because they are so expensive they have to apply for funding from the local Authority on an individual basis, Apparently its taking 6+ weeks for approval. I've had all the pre bio blood tests (HIV etc) They took about 12 vials last time i was there.
This some crazy post code lottery hell you are describing. I'm not sure I understand how the NHS cannot provide the drugs you need.