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Remission :-)

Confirmed by colonoscopy today. No sign of active disease. Will come off Infliximab but remain on Aza and have to watch out for signs of a possible small stricture in ilecaecal valve area. Other than that, next test in 6 months.
I had a little weep, now I can't stop smiling :) :heart::heart::heart: and wishing the same to you all.
 

Terriernut

Moderator
Helen, that made my day! Seriously, if anyone deserves it, it is YOU! I'm doing a happy dance over here!!! :dance:
 

Trysha

Moderator
Staff member
This is really great news and hope it keeps up forever.
Did you get to go shopping after all, with your friend?
Keep up the good news.
Hugs and best wishes
Trysha
 
Thank you all :) Yes, Trysha, in the end I did so much shopping I had to buy another bag. Lol. My friend has been having a few bowel issues of her own and, irony of ironies, has been called for a colonoscopy next week but at the local hospital. She says she's glad she knows what to expect now and I'll go as her escort.
 
Can't believe i missed this thread. Brilliant news and no more trips to the mainland. Yippee.
How do you feel about stopping the infliximab?
 
Littlemiss, tbh I'm not sure how I feel about stopping it. It was my mainland GI who was doing the colonoscopy and we did chat during and just after the procedure, but my memory is a bit patchy. I think I asked him and he said just to stay on the Aza and he'd see me on six months unless I have signs of a flare.
The only other thing I remember really is about the wee stricture and something about a balloon ( so I'm guessing to dilate? ) but he couldn't get the scope round there cos of a kink and I was in a lot of pain so they stopped.
 

Terriernut

Moderator
Helen, I would sure confirm that. I cant see them taking you off a drug that has put you in remission. Can you please get a confirmation of that? I think they make offhand remarks, especially without reading notes. I dont believe he would take you off infliximab at this time. It's for long term use isnt it?
 
Yes, I guess I'd better check when I get the colonoscopy report. When I had the last infusion, the IBD nurse said the next step would be the scope to assess progress and decide whether to keep me on it or not.
But would they decide it wasn't working after only three infusions and stop it? Maybe he thinks I can maintain remission on the Aza? When I went in for the pre-op, the surgeon said he thought the Aza wasn't working, but I'd only been on it two months at that point.
 

Terriernut

Moderator
I would sincerely hope they would keep you on it Helen. You have been doing so well on it, I'd hate to see you go backwards.:heart:
 
Aww, thanks Misty xxx I will definitely follow it up and let you know. I also posted over on the Remi/Infliximab subforum to see if anyone's been down a similar route. Part of me wonders if it could be monetary. Apart from the cost of the drug, it costs a lot to get me over to the mainland for the treatment.
 

Terriernut

Moderator
Helen, it IS cost. They shouldve done a blood transfusion on me 2 1/2 weeks ago, RBC got down to 7. Instead, they let me just lay on the sofa til the count they HOPE got better. Dont know until I get more blood work done next week! The NHS is cutting back big time.
 
The question you should ask is why stop when aza didn't get you into remission. Infliximab (or any biologic) may not work as well if stopped and started. You are more likely to develop antibodies against a tnf blocker if stopped and restarted. I would ask about that also. They may feel that the risks of continuing are higher than the risks of stopping...but ask.
I would be anxious stopping it for these reasons.
 

Terriernut

Moderator
I went back to work last Sat. No blood tests to be done til next week. No quicker GI appt. Honestly, dont EVER live in this area. I'm doing better. But I certainly cant take Azathioprine or 6MP. So stay on pentasa until the next flare and probably a proctocolectomy.
 

DustyKat

Super Moderator
I have read many times, in articles, that use of biologics in the UK is for a limited time only. If surgery is required it is ceased, if you reach clinical remission it is ceased. It would appear that use is only extended whilst active disease is present.

http://guidance.nice.org.uk/TA187

As Misty has said, it would be cost driven due to it being government funded.

Dusty. xxx
 
I will not be amused if they try and take me off humira if it works. I am not prepared to go through another 12 months like the last and more than one close call just to see if i relapse off it. And for you hrlen the risk of surgery if you relapse.Surely it would be more appropriate to continue as it means it has worked whereas those with ongoing active disease it has not worked as well. It doesn't make sense. Is this the policy in Australia as well dusty??

I do know of more than one person on biologic who continues and is remission. I wonder how they make their decision?

I will ask my GI on Tuesday.

Misty , you should get your gp to leap up and down or write a ltetter of complaint about no earlier GI consult- you are not on an effective (for you) maintenance drug and this needs to be addressed. Oooh it makes me mad!!
 
Thank you all, this confirms what I thought he said, methinks. And yes, Misty, I do believe it's a real postcode lottery when it comes to treatment :) I also did a little googling in the meantime and the consensus seems to be three infusions then an assessment for moderate to severe fistulizing Crohn's. Then it's like Dusty says.
 
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DustyKat

Super Moderator
As far as I know they are listed for use in inducing and maintaining remission. When Matt was first diagnosed, and Humira was touted as a possible treatment, the GI stated then that it would be long term.

Dusty. :)
 
Sheesh, this all smacks of false hope, doesn't it? Littlemiss, surely to God they will not start you on it then pull the rug from under you after all you've been through?
Guess I'd better make the most of this remission and not fall of my diet etc wagon just yet!
 
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