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Is it time for the next tier of treatment?

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Ulcerative Colitis
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Posted 10/15/2015 9:50 PM (GMT 0)
Hi Guys,

I would just like to share my situation and get some advice/support.

I have been flaring three years straight (Diagnosed Sept 2012), the only time I have felt in control is when I am on a high dosage of steroids.

I have tried topical treatments such a Prednisolone, Colifoam and Mesaline in both enema and suppository form.

Oral meds have also been tried up to 4.2g mesalazine along with Prednisolone courses, one taper took six months before getting off of it! Also been on 150mg on Azathioprine for around 18months.

My point is a have tried both the first and second tier treatments with patience but no success. Is it time I move to the third tier big guns?

I am talking about Humira or Infliximab. I currently still have blood when going to the toilet maybe 6-7 times per day which is pretty urgent 99% of the time.

What would you do? I am correct in wanting to try something new? I am sorry to sound vague but I can assure I have tried all kinds of natural remedies as well as being very patient with the standard UC meds.

My last scope showed rectal and sigmoid inflammation 10cm. I am due another scope but the plan of action is to try steroids for a 4th time. It didnt work the first three times so I don't want to try it again, especially with the side effects they have.

Any insight will be greatly appreciated and very much taken on board. Forgive me for my grammar I am on an iPhone and it's 23:00!!

Thank you in advance
Posted 10/15/2015 9:54 PM (GMT 0)
Yes I would move up to the next tier of drugs. Uncontrolled inflammation can increase your chances of colon cancer. If nothing else is helping, time to try the next level.
Posted 10/15/2015 10:06 PM (GMT 0)
3 years seems like a very long time to be tinkering around with just mesalamines and aza without moving up to something else. Within 10 months of being diagnosed, I moved on up to trying Remicade after mesalamines and aza weren't cutting it.

Also, you can't just keep trying courses of steroids. Those might heal you temporarily but if you don't have a maintenance drug that is working then once you are off the steroids you will be flaring again.

fwiw, I had my first Remicade infusion just over a week ago and have had a complete turnaround from how I was feeling before it. I went from having 15-20BMs a day, terrible pain and urgency, bloody and D to now just going about once or twice a day, completely formed stools, virtually no pain or urgency. It has been a whole new life for me the last week and is amazing. I can't even remember ever feeling this good. My next infusion is in 6 days and I am hopeful that I finally found something that will put me in remission.
Posted 10/15/2015 10:25 PM (GMT 0)
I would definitely want to try to find something that works to tame the beast.

If you were on 4200 5ASA, you could try going to 4800mg plus using rectals once or twice daily. You said sigmoid was active, enemas could help that.

As far as Aza goes, were you getting the proper blood work to see whether you were therapeutic? If not, who knows what benefit you were getting if any.

The rectals you tried, were you using them regularly in addition to the 5ASA and the Aza? Did you try different combos? Did you try straight steroid enemas? Not foam? foam is great for retention but if you can retain the liquid, it's more effective.

If none of that helped, i would be ready for the next step.
Posted 10/15/2015 10:35 PM (GMT 0)
Yes, I would go on infliximab/remicade or humira. For sure. Remicade is the only uc drug to put me into remission. Some have had good luck with humira as well.
Posted 10/15/2015 11:36 PM (GMT 0)
I would get on biologics ASAP.
I might also get a second opinion.
Why were steroids being prescribed over and over when there wee other options.
Those are the worse and hardest to tolerate drugs for ibd.
Posted 10/16/2015 8:59 AM (GMT 0)
Thank you for all of your replies!

I can confirm the Azathioprine is at a therapeutic level. I have also tried different combinations but have never been able to find a consistency of symptoms when using a medications.

I am going to push for Remicade as I think the time has come. I just feel that my GI has no plans to ever go to the next level and keep trialling the same medications (NHS, UK).

Any advice on how to push for it would be very much appreciated.

Thanks again! 

Posted 10/16/2015 10:39 AM (GMT 0)
Seeing as you're in the UK you could consider asking for Inflectra instead of Remicade (essentially the same thing, just the biosimilar version of Infliximab). I'm also in the UK and the hospital I get my treatment at gave me that instead of Remicade because apparently it's cheaper, I'm not sure what the actual difference in price is to the hospital but they might be more willing to try that? I've had four infusions of it now and am finally in remission after a 2 year long flare that felt like it would never end! :-)
Posted 10/16/2015 11:52 AM (GMT 0)
Charlotte91 - Many thanks for the information you have provided. I will mention this when at my next appointment.

How many infusions did you have before things started easing up? What were your symptoms before starting these infusions? Do you (if any) still have bad days?

Kind Regards
Posted 10/16/2015 1:13 PM (GMT 0)
Before I started the infusions I was going to the toilet probably 8-10 times a day with urgency, mucus and occasional blood, and was in a lot of pain most of the time. I'd also tried cyclosporine which helped a bit initially but didn't fully get rid of my symptoms (got me from going 15-20 times a day down to 8-10), and had been on steroids for almost a year.

The bleeding stopped straight after the first infusion but I was still having problems with frequency and urgency, although these started to settle about 2 weeks after my second infusion, by which time I was going to the loo about 5-6 times each day. I came off the cyclosporine just before my third infusion.

Between my third and fourth infusions I also came off the steroids (I'd been on them at varying doses for over a year at this point), and my symptoms started to very mildly flare up again, but using Salofalk suppositories seems to have nipped that in the bud.

I haven't had a bad day for 2-3 weeks now and am going once or twice a day, with no urgency, mucus or blood.

Hope this helps and that you can get some treatment that works for you!

:-)
Posted 10/18/2015 1:12 PM (GMT 0)
I'm glad you've found something that works for you. I will push for this as I am fed up of being trialled on different medications with no success. Thank you very much!
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