Share Facebook


02-07-2012, 03:33 PM   #1
Grumbletum
Senior Member
 
Grumbletum's Avatar
 
Join Date: Dec 2010
Location: Western Isles, United Kingdom

My Support Groups:
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 :-) and wishing the same to you all.
__________________
Dx Crohn's terminal ileum April 2011
Ileocaecal resection & partial cystectomy Sept 2012
3.5 years happy remission, in mild flare since Feb 2016 with related Portal Vein Thrombosis

Previous: Prednisolone, Mesren, Omeprazole, Infliximab, Azathioprine
Current: Pentasa, Librax, Warfarin
Helen x
02-07-2012, 03:36 PM   #2
bozzylozzy
Forum Monitor
 
bozzylozzy's Avatar
 
Join Date: Oct 2011
Location: Sheffield, UK
yaaaay! high five!
thats awesome news! xxx
__________________
Grumbling Appendix removed OCT'11
Chiari Malformation diagnosed JUNE'12 (surgery 5th July)

Alternating diagnosis of:
Seronegative Inflammatory Arthritis / SAPHO syndrome

Meds:
Vitamin B12 injections
Sulfasalazine
(Previously Prednisolone.. worked a treat!)

Watch out.. there's a blonde about!
02-07-2012, 03:45 PM   #3
sawdust
Moderator
 
Join Date: Dec 2010
Location: Pennsylvania

My Support Groups:
Great news G-tum! I'm very, very happy for you!
02-07-2012, 03:48 PM   #4
Astra
Moderator
 
Astra's Avatar
 
Join Date: Jan 2010
Location: St Helens, Merseyside, United Kingdom

My Support Groups:
Congrats Helen! You soooooooooooo deserve it!
Stay well & happy 4eva xxxxxxxx
__________________


Joan

Dx Crohn's in TI 2005 symptoms for 15 years prior

BEEN ON -Azathioprine, 6MP, Prednisolone, Pentasa, Budesonide, Metronidazole, Humira, Methotrexate,

NOW ON -Amitriptyline 25mg
21/02/14 Right hemicolectomy surgery




http://www.facebook.com/#!/profile.p...4208290&ref=ts

No-one should make you feel inferior without your consent!

02-07-2012, 03:52 PM   #5
Terriernut
Moderator
 
Terriernut's Avatar
 
Join Date: Dec 2010
Location: United Kingdom

My Support Groups:
Helen, that made my day! Seriously, if anyone deserves it, it is YOU! I'm doing a happy dance over here!!!
__________________
Misty
DX Crohns Feb 2011, symtoms 1997, 2009 and then WHAM! Emergency surgery for perforated sigmoid, fistula through fallopian tube, septic and near dead: Colostomy-Stan was born 22/12/10. Another parastomal hernia, his name is Ollie and he is MONSTER size!
4gm Pentasa
6MP 50mg
02-07-2012, 03:54 PM   #6
DustyKat
Super Moderator
 
DustyKat's Avatar
 
Join Date: May 2010
Location: New South Wales, Australia


This is just the best Helen!!! I'm greetin too!!!



Dusty.
__________________
Mum of 2 kids with Crohn's.
02-07-2012, 05:06 PM   #7
Angrybird
Moderator
 
Angrybird's Avatar
 
Join Date: Nov 2011
Location: Cambridge, United Kingdom

My Support Groups:
Wahooo!!!!! What wonderful news, this has seriously cheered me up
__________________
Angrybird

DX: Crohns July 2002
Surgery: Ileocecal Resection Sept 2011
Now:Tummy behaving itself and new mummy to baby Nicholas
Current Meds: 6-MP 75mg,B12 injections every 3 months
Previous Meds: Budesonide, Prednisone, Remicade, Pentesa,Hydroxychlorequine,Azathioprine (tried twice) and Methotrexate
02-07-2012, 06:15 PM   #8
Trysha
Senior Member
 
Trysha's Avatar
 
Join Date: Aug 2009

My Support Groups:
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
02-07-2012, 07:10 PM   #9
Dexky
To save time...Ask Dusty!
 
Dexky's Avatar
 
Join Date: May 2010
Location: Kentucky

My Support Groups:
WoooooHoooooooo!!!! Way to go Helen
__________________
Mark, father of EJ

EJ dx w/ Crohn's 12/09
PSC 3/10

No more 6mp
Currently in the Humira Club
02-07-2012, 08:21 PM   #10
rygon
Moderator
 
rygon's Avatar
 
Join Date: Jan 2010
Location: Grimsby, United Kingdom

My Support Groups:
Sweeeet !!! Well Done
__________________
Current Meds:
2x 1200mg Mezavant, 3x50mg Azathioprine, Infliximab (6 weekly)
02-07-2012, 10:59 PM   #11
mickey
Senior Member
 
Join Date: Dec 2011
Location: Illinois
Congratulations!
02-08-2012, 01:23 PM   #12
Grumbletum
Senior Member
 
Grumbletum's Avatar
 
Join Date: Dec 2010
Location: Western Isles, United Kingdom

My Support Groups:
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.
02-10-2012, 12:55 PM   #13
littlemissh
Senior Member
 
littlemissh's Avatar
 
Join Date: Dec 2010
Location: United Kingdom

My Support Groups:
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?
__________________
Diagnosed Crohns small bowel 2010,Gastroduodenal crohn's Jan 2012. Gastroparesis june 2014.
Duodenal perforation/peritonitis nov 2011. Portacath placed Nov 2013. Gastric pacemaker 2015.
Perforated jejenum/peritonitis oct 2015, PEJ for enteral feeding nov 2015

On Humira every 7 days, intermittent iv iron, regular blood transfusions :faint:
On TPN since March 2016.
02-11-2012, 12:33 PM   #14
SnowDay
Senior Member
 
SnowDay's Avatar
 
Join Date: Nov 2011
Location: Ireland
Very good news.
__________________
Dx'd w Leaky Gut Syndrome in 08. Had eczema(autoimmune), chronic fatigue, asthma and suspected crohns(booked for an endoscopy).

Been on cyclosporine, currently on vit d3, zinc, probiotic, digestive enzymes, getting iv drips of vit C, B complex, folic acid, niacin and EDTA twice weekly and living on an all poultry diet. WANT CARBS
02-11-2012, 03:18 PM   #15
Grumbletum
Senior Member
 
Grumbletum's Avatar
 
Join Date: Dec 2010
Location: Western Isles, United Kingdom

My Support Groups:
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.
02-11-2012, 03:29 PM   #16
Terriernut
Moderator
 
Terriernut's Avatar
 
Join Date: Dec 2010
Location: United Kingdom

My Support Groups:
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?
02-11-2012, 03:52 PM   #17
Grumbletum
Senior Member
 
Grumbletum's Avatar
 
Join Date: Dec 2010
Location: Western Isles, United Kingdom

My Support Groups:
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.
02-11-2012, 03:57 PM   #18
Terriernut
Moderator
 
Terriernut's Avatar
 
Join Date: Dec 2010
Location: United Kingdom

My Support Groups:
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.
02-11-2012, 04:15 PM   #19
Grumbletum
Senior Member
 
Grumbletum's Avatar
 
Join Date: Dec 2010
Location: Western Isles, United Kingdom

My Support Groups:
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.
02-11-2012, 04:22 PM   #20
Terriernut
Moderator
 
Terriernut's Avatar
 
Join Date: Dec 2010
Location: United Kingdom

My Support Groups:
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.
02-11-2012, 04:37 PM   #21
littlemissh
Senior Member
 
littlemissh's Avatar
 
Join Date: Dec 2010
Location: United Kingdom

My Support Groups:
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.
02-11-2012, 04:39 PM   #22
littlemissh
Senior Member
 
littlemissh's Avatar
 
Join Date: Dec 2010
Location: United Kingdom

My Support Groups:
And misty - I still can't believe they didn't transfuse you. How ya doinng now, have you a sooner GI appt?
02-11-2012, 04:44 PM   #23
Terriernut
Moderator
 
Terriernut's Avatar
 
Join Date: Dec 2010
Location: United Kingdom

My Support Groups:
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.
02-11-2012, 04:46 PM   #24
DustyKat
Super Moderator
 
DustyKat's Avatar
 
Join Date: May 2010
Location: New South Wales, Australia
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
02-11-2012, 05:12 PM   #25
littlemissh
Senior Member
 
littlemissh's Avatar
 
Join Date: Dec 2010
Location: United Kingdom

My Support Groups:
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!!
02-11-2012, 05:20 PM   #26
Grumbletum
Senior Member
 
Grumbletum's Avatar
 
Join Date: Dec 2010
Location: Western Isles, United Kingdom

My Support Groups:
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.

Last edited by Grumbletum; 02-12-2012 at 04:24 AM.
02-11-2012, 05:20 PM   #27
DustyKat
Super Moderator
 
DustyKat's Avatar
 
Join Date: May 2010
Location: New South Wales, Australia
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.
02-11-2012, 05:37 PM   #28
Grumbletum
Senior Member
 
Grumbletum's Avatar
 
Join Date: Dec 2010
Location: Western Isles, United Kingdom

My Support Groups:
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!
02-11-2012, 11:29 PM   #29
mickey
Senior Member
 
Join Date: Dec 2011
Location: Illinois
congratulations!
Reply

Thread Tools


All times are GMT -5. The time now is 10:14 PM.
Copyright 2006-2017 Crohnsforum.com