Pancolitis for 11 year latest scope now have crohns

[Jojolou]

Hi all Was diagnosed with Pancolitis 2004, steroids Not effective then azathioprine caused pancreatitis, ciclosporin didn't work...ended up two weeks inpatient.... Blood transfusion etc 2006 put on infliximab finally in remission. Infliximab stopped twice both time relapsed...now infliximab is apparently not funded for UC so hospital stopped infusions in jan...relapsed again...colonoscopy two days ago show severe ulceration left and right sided and ulceration terminal ileum which means I now possibly have crohns awaiting result of 18 biopsies to confirm can UC change to crohns or was I misdiagnosed for 10 years also has anyone else had infliximab withdrawn due to funding...very frustrating...I only ended up on biological as nothing else worked now they have taken them away and allowed me to relapse againoo:

 

[24601]

Hi! Welcome to the forum!

So sorry to hear of your struggle to find an effective treatment...and then to have them stop and start it and withdraw funding.

I have Crohn's, not UC, so am not familiar with the funding guidelines for that use of infliximab but I would have hoped that they would have asked for special approval since it was what worked for you and you risk losing it as a treatment by stopping.

If you do get diagnosed with Crohn's I'd hope you would then fit the criteria for funding - and if infliximab is no longer an option that you would be offered adalimumab or another biologic.

Please keep us updated. Have you heard back about the biopsies yet?

 

[Jennifer]

Hi Jojolou and welcome to the forum! Sorry for the late replies.

It's very possible that you were misdiagnosed as UC does not become Crohn's. They are completely separate. There are some rare cases where people have been diagnosed with both however. Hopefully the biopsies will give a clear picture of what's going on.

As for funding, that's very common unfortunately. There are programs here in the USA for getting funding for Remicade (Remistart and Johnson & Johnson) but I'm not sure if there are any in the UK or if either of those extend to the UK. We have many members on the forum from the UK but I'm not sure which ones are on or have used Remicade for UC so I'm not sure who to tag. For starters I would suggest starting a new thread in Remicade here: http://www.crohnsforum.com/forumdisplay.php?f=58 and ask if anyone knows of any type of funding for Remicade in the UK for those with UC.

In the meantime if you haven't changed your diet already a soft low residue diet or even all liquids (there are supplement drinks out there or you can also make your own soups and drink the broth for nutrients) can help to reduce symptoms. Keep us posted on how you're doing.

 

[24601]

Hi Joujou,
I just looked up the NICE guidelines for infliximab for Ulcerative Colitis and I see that although it only used to be approved for acute exacerbations (and not maintenance) that it is now (along with adalimumab and golimumab) approved for use for "moderate to severe ulcerative colitis if conventional therapy hasn’t worked or isn’t suitable."

They also say "People should be able to have the treatment for at least 12 months, unless it stops working well enough. Their condition should be assessed at least every 12 months. Their doctor should discuss with them the benefits and risks of continuing or stopping treatment. If treatment is stopped and the ulcerative colitis gets worse, people should be able to start treatment again.

What does this mean for me?

If you are an adult with moderate to severe ulcerative colitis and your doctor thinks that infliximab, adalimumab or golimumab is the right treatment, you should be able to have the treatment on the NHS.

These treatments should be available on the NHS within 3 months of the guidance being issued."

Since this appraisal guidance is dated February 2015 that means that these treatments should be made available to you on the NHS this month. I would most definitely speak to your doctors about this and tell them that you understand that under NICE technology appraisal guidance [TA329] these treatments should be made available to you.

You'll find all that information here and it might be worth printing out to take with you

If you get a diagnosis of Crohn's then infliximab and adalimumab should also be available to you - see the NICE guidelines are here.

 

[Jojolou]

Thanks for the links that's really helpful to know how it all works...im guessing if crohns is diagnosed now the funding should be agreed anyway