Search results

Yeah, he reacted super quick to Tofa. We are seeing a little bit of fall off in the last couple of days. Very difficult to know at this early stage. It's a minefield! And as ever, it's the hope that gets you!

So, another update on J. He started on the Tofacitinib under 2 weeks ago. After 3 days he started to visibly improve and he is symptom free at this point. So, great news. We're still worried as he has been here before and drugs have just stopped working. So, cautiously optimistic but it's...

@crohnsinct Sorry to hear your daughter is fighting surgery as well. I am coming around to thinking it may be some kind of release from all this. I sincerely hope she gets well. I've not followed up on Tacro/Cyclo as a bridge for Vedo. I'll ask.

Hi all So we went to see the GI consultant on Tuesday. He said there were three options, 1 Vedo, 2 Tofacitinib, 3 Surgery I asked about metothrexate but he said it had no role to play in UC. He thought Vedo was not a great option as it could be 6 months before we knew whether it was...

Hi I'm in Ireland. I feel they would combine biologics if they thought it would be effective (i.e. regardless of cost). We attend the children's hospital here where all IBD kids in Ireland go... there is a panel of Dr's / Professors of GI and they do peer review their work. I think any second...

Hey again... He's not had any genetic testing. I wasn't aware it was a thing. It occurred to me to ask about methotrexate ... I'll do it tomorrow. I did read a small study that said methotrexate didn't work as well in combination with Stelara as with the anti-TNF's. Have you heard different? I...

Hi, My 13 year old son has UC for 18 months (maybe Crohns - there was some inflammation in the ileum)... He has tried Humira, Infliximab, Steroids, EEN and they have all failed to arrest his disease. He did get a response from Infliximab but that lasted about 4 months. He started Stelara in...

Hi all Just thought I'd update you on J's progress. Last year he was newly diagnosed and failed on Remicade / Humira / EEN / Steroids. This led to 3 hospitalizations and the brink of surgical solutions. It was a scary time. So, in January J started Stelara. He was in a bad way in hospital and...

Right, this is the most anecdotal of anecdotal evidence, but my neighbour is in the trial (I'm based in Ireland). He had run out of options as well. He has got a good hit off ozanimod and is now well. I think he has been on the trial for over a year now.

Just to give everyone a heads up, J has continued to improve. The antibiotics (or the Stelara giving a hit after 6 days - seems unlikely) have really had a profound affect. The fevers stopped the very next day, the pain went from an 8 to a 2 and J's appetite has returned in a big way. His poops...

That's all good to know. Hopefully they will help J out. I am so glad that O is hanging on in there. Seems like she is on the same as J minus the vancomycin. It's nice to think of O as going to college and living her life - it can be difficult to see into the future when your 12 year old is so...

Yeah, he had a couple of poop tests to check for CDiff etc. Poops were smelly so there was a suspicion that something bacterial could be going on. So, we're going all out on the antibiotics it would appear Metrinodizale (Flagyl - I had this one myself after a fistula operation about 18 years...

I can mention it to the GI's but it's not something that they have suggested. Also, he's been in the hospital for a week up to Monday and it wasn't suggested. One additional thing which is causing huge stress and discomfort is the fever J has been running for the last couple of weeks. It's...

Hi, J initially didn't get levels on the infliximab initially but by the end he was up to 16 so it wasn't the amount of infliximab... he didn't have significant antibodies, it just stopped working. J tried oral steroids last year and they had no impact on his inflammation unfortunately. He...

Hi again :-( So, my son started infliximab last year after failing on EEN, oral & IV steroids and Humira. J got to remission after a few months on Infliximab. He took a while to get going and was receiving it every 4 weeks. He had about 3 months clear before it stopped working about two months...

@crohnsinct I very nervously stopped the pred enemas 2 nights ago. He seems to be ok although he maybe thought he needed to go a couple of times today but didn't which can be a sign of some rectal inflammation. I tried a couple of weeks ago on the second dose and it didn't go well. I hope O can...

Hey everyone... So, just to give you a heads up... J received his third infusion last week and he is much improved. We are very happy with his progress. He is due to start back to school next week and we are going to send him for the first couple of days at least. He has an iron infusion the...

Hey all, Just to give you a heads up... J is due for his infliximab on Tuesday. He has been doing generally well for the last couple of weeks. He is going 6 times a day roughly. He is still on the pred enemas so there is a question mark as to what is damping down the inflammation. We eased off...

So, J's condition is improved since his second infusion on Monday. Both night time and day time activity is down. He has been getting up at most once a night this week. I am not getting overly excited but there is definite improvement in his scoring and number of visits to the bathroom. We've...

So we got j back from the hospital yesterday after the infliximab. They'd prefer to have kept him in but the hospital is just exhausting. J got an eight hour stretch of sleep last night and a good 2 hour nap this afternoon so it feels worth it. He's been active on the toilet in between. The...