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Update 1 year on from starting Infliximax

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Posted 1/18/2019 11:02 AM (GMT 0)
I posted approx a year ago when I first started Infliximab.

My post a year ago was along the lines of everything working as expected and feeling great.

Unfortunately the results were short lived but I'm still on Infliximab.

My meds are currently:
15mg Pred (Literally just come down from 20mg which I've been taking for about 9 months) daily
150mg Aza daily
6 Octasa daily
Infliximab once every 4 weeks

I've started reducing my pred as the amount of blood daily has been reducing and my HB is finally returning to normal as are my iron levels. They've never been above 100hb for a year and it's just gone up to 120 (thank god).

When I first started on Infliximab a year ago, I was in a lot of pain in my rectum when going to the toilet, no other pai anywhere else.

I can't say what I'm currently taking has improved me 100% but my quality of life is certainly better.

My questions are:
I still lose blood daily, is this normal?

I don't experience any pain, at all. Am I just in early stages of my condition where pain will come later? I was diagnosed November 2017.

I still go to the toilet regular, in the afternoon this just becomes loose stool rather than blood. Is this normal?

What should I expect out or remission if I ever achieve it?

If I'm on a night out, I very rarely go to the toilet (I don't go out often), this makes me think a lot of my toilet visits are in my head. Does anyone else experience this?

Some clarification points:
I have Colitis
I rarely suffer fatigue
I don't have problems with appetite
Posted 1/18/2019 1:42 PM (GMT 0)
Thanks for checking back in and following up. Although I truly had hoped you'd say remission!

If you're almost a year into remicade and all of those other medications without a complete remission, have you and your doctor talked about upping your remicade dosage or switching to another biologic (like entyvio or xeljanz)? You can run a blood test 24-hours before your next remicade/infliximab infusion to see what the very lowest concentration of remi is within your system and whether you've developed antibodies to it. If true, upping your dosage from 5mgs per kilogram to 10mgs per kilogram, and/or decreasing the frequency of your infusions from 8 week intervals to 6 or 4 week intervals can help. It's also quite possible you've failed remicade.
https://www.labcorp.com/test-menu/29496/infliximab-concentration-and-anti-infliximab-antibody

8-months on pred is not good.

1.) I still lose blood daily, is this normal? No this is not normal or acceptable for long term for us. You're still inflamed and flaring. What is normal for us is a remission, an absence of all UC symptoms.

2.) Am I just in early stages of my condition where pain will come later? Severe inflammation can result in a lot of lower abdominal pains. For example: when I was pooping 20+ times a day I had short, sharp knife-stabbing pains, the type that takes your breath away and doubles you over in agony. I had more mild and long lasting aching during the same flare as I healed. We can get various joint aches during flares as well (about 25% of us do, the most common extra-intestinal manifestation of UC).

3.) I still go to the toilet regular, in the afternoon this just becomes loose stool rather than blood. Is this normal? Again, remission is normal which is 1-2 formed, non-urgent bms a day free of blood. So, no, not normal.

4.) What should I expect out or remission if I ever achieve it?
Posted 1/18/2019 2:18 PM (GMT 0)
Thanks for taking the time to reply.

I too was hoping that it would be remission which was achieved but I must say that I've come a long was since I posted that message a year ago. My plan was to keep everyone updated but to be honest, so much happened after it that I didn't want to dishearten anyone starting on the medication. I'm a believer that a lot of this condition is state of mind so I didn't want people going into the medication negatively.

I've never really suffered much pain except when the inflammation was in my rectum. That was like a sharp pain like I had a golf ball in my bum all the time. Driving a car was painful. That seems to have cleared up.

The amount of blood I'm losing is a lot less than it was since starting Aza about 3 months ago. It was introduced to aid the Infliximab. It apparently gives it a boost.

I was taken down to 4 weekly infusions as the effects of Infliximab seemed to be wearing off after 2 weeks.

I've had my Infliximab levels done, I'm apparently on a "medicated dose" now.

There is talk of putting me on Humira instead of Infliximab. They said it's similar but just an alternative.

They want to trial me on Aza and Inflix just to see if they work well together and start the remission process.

Like I say, my quality of life is much better but still not 100%. Although I don't know where to set my expectations.

My resistance to all drugs seems to be quite high. They've lowered me to 4 weekly on Infix and upped me to 150mg on Aza as my levels were low when I was tested. I have a feeling that on my next nurses visit they'll talk about changing Infliximab to humira or upping my Aza more.

I do count myself lucky for multiple reasons:
I don't have any side effects at all from the drugs I take (including pred)
I don't suffer pain, only frequent toilet visits
My wife is super supportive, if I'm having a bad day on the toilet she's very understanding

I think I just wanted some guidance from here really to see if anyone had any similar experiences and how they coped.

I've tried some homeopathic remedies too which didn't seem to change much.

I've also tried a strict diet (eating less, not eating spicy etc) and not much changes.

The one thing that annoys me is when my mind is occupied (night out, busy at work), my toilet visits are less frequent, almost like they're in my head.

Now my HB has increased, I'm considering going back to the gym, just taking it easy at first as I haven't been for a long time. I would like to think that exercise in general will help my state of mind and relax me and hopefully reduce symptoms.

I'd like to say that a year on I'm wiser about my condition but I think I've just become more accepting. I'm a member of a few groups on Facebook and I must say that what people post in there makes me feel like a fake, their experiences with the condition are so much different to mine in a much worse way. If I didn't have frequent toilet visits then you wouldn't know I had the illness.

I'd almost be inclined to say that there aren't just two types of IBD but hundreds, which affect people in different ways. I think that's why a lot of medications are trial and error as they help treat the different types.

You mention about still flaring, with taking Aza I'm doing weekly blood tests at the minute and one thing I've noted is that my inflammatory markers are about 10 (not sure if that's high) but they have been a lot higher than that.

My blood work is showing nothing but signs of improvement at the minute. Higher HB, Iron levels returning to normal and Inflammatory markers reducing.

I'm also have what I call "poo days (in joke with the wife)" in which I'll have nothing but a day of fully formed stools and I'll go to the toilet about 6 times during the day in which I'll clear out my bowels. This happens around once every 4 days. In between those days I'll still go to the toilet and have formed stools but they are just less frequent and more blood. When I have my "poo day", there is little to no blood. It's all very confusing and annoying.

I just want to reach a point where booking holidays or trips away from home doesn't stress me out thinking about how I'm going to cope somewhere which isn't my home.

Again, this comes back to expectations.

If you're reading this and you're just starting Infliximax / Remicade then do not think that it won't work for you. It has helped me a lot since I first started but I'm just looking for that final push now into remission. Everyone is different in the way they receive their medication and what works for one doesn't always work for someone else but keep positive!
Posted 1/18/2019 2:48 PM (GMT 0)
Remission should see the end of blood and no signs of inflammation on a scope. What it means for symptoms is less clear. Patients of course wand to be free of symptoms, but there is growing evidence that upto 15% of IBD patients have persistent GI issues after all inflammation is gone. In some cases this is seen as IBS secondary to IBD, but not always.

Lose stools, bloating, and occasional D does not go away for everyone, and upping IBD meds has no effect - because they target inflammation which is no longer present.

It does sound like you have failed Remicade. Or maybe partially failed. But if 1-year in you need Pred to manage things, then it is not working as intended even if it seems to be helping. Yes, adjusting the thiopurine immune-suppressants could do the trick, but it may be time to consider other biologics outside the tnF class.

good luck
Posted 1/18/2019 3:44 PM (GMT 0)
If you weigh 132-165 pounds (60-75 kilograms) then the azathioprine dosage is correct for your body weight. As we're dosed 2.0 to 2.5 mgs of azathioprine for every kilogram of body weight. The other key to azathioprine dosing is our blood work, which has to support higher dosages (if your hepatic/liver function test shows any signs of elevated enzymes then the aza dosage cannot be raised).

Yes, I have "high volume" days randomly where I clear myself out and poop a lot of stuff out. Common during flares.

You're not lucky, as you're currently flaring. Any level of symptoms truly sucks, yeah it could be worse but it is still bad no matter how you try to sugarcoat it smile

Switching to humira is an option.
Posted 1/18/2019 9:41 PM (GMT 0)
Hi Iom83
I'm sorry to hear your story!
Re quality of life, I think we get used to jumping through 100 hoops every day with colitis that we forget what "normal" feels like.
I have a persistent left sided colitis and I tend to compare it with my worst pancolitis flare. Like you I had a partial response to infliximab (as well as being steroid dependent and taking azathioprine and mesalazine at the same time). My (current) doctor's view is that the bowel symptoms should be totally eliminated. I was afraid to change but he asked me "Do you want to live like this for the next 50 years?" From that perspective, I was willing to take a risk and switch drugs.
I was on pred for nearly 2 years, and most of that time 15mg. I changed hospitals because (among other reasons) they were too laid back about my steroid dependence. As soon as I switched my new dr ordered a dexa (bone density) scan which showed I have severe osteoporosis in my spine and osteopenia in my hip. I hope we caught it in time (im on drugs to reverse it) but it was an extra stress on top of dealing with the UC that could have been avoided if we'd done the bone scan earlier.
When i started on infliximab i was taking 15mg pred and slowly weaned down to 5mg. A week later I had the most sudden flare up (literally went from formed BMs to fever and diarrhoea overnight). Hospital didn't believe it wasn't food poisoning so sent me for a billion tests which all came back negative before doing an emergency colonoscopy that confirmed i was indeed flaring severely on the left side. They then tested my blood levels of infliximab. They were perfectly in therapeutic range (i.e. no antibodies) so the hospital decided to double the dose from 5mg/kg to 10mg/kg. That made a big difference but i was still stuck on 5mg pred and still having perhaps comparable symptoms to what you have now. So... I made the decision to switch drugs and I don't regret it at all. I am still not in remission (still trying different drugs) but the big plus is that I have managed to get off pred completely (and on average feel a little better than the infliximab days).
Posted 1/18/2019 9:54 PM (GMT 0)
Hi it's me again...i came back for a second post because i was afraid my internet would eat the first one if it got too long. I wanted to comment on this:
"I'm a believer that a lot of this condition is state of mind so I didn't want people going into the medication negatively."
Obviously everyone is entitled to their own beliefs. I gave myself severe anxiety for thinking along these lines because I was blaming myself for not getting better. I ended up in psychotherapy. My therapist helped me to see things differently. I also discussed this kind of stuff with my doctor. I can tell you it has been the most liberating feeling ever once I came to accept that colitis is not a psychological problem. I am no longer a terrible person or a failure. Life craps on everyone sooner or later. The disease does what it wants to do, and I do what i can within my limits to treat it.
You know for years they thought stomach ulcers were due to stress...until they discovered the bacterium that caused it?
(Have to say there is a part of me that fantasises about a day when they identify a bacterium that causes colitis....)
All the best with your next step forward. I think you can do better than this. Also, infliximab only works for about 50% of people who try it, so i don't think it's negative to tell your story as one of the 50% where it didn't succeed smile
Posted 1/24/2019 11:00 AM (GMT 0)
Sorry I hadn't replied sooner, for some reason it never notified me via email that some responses had come through.

I appreciate everyone posting their experiences.

My hospital is quite "on it" with the whole steroid thing. Every time we try something new they try to reduce my steroids to remove the dependency. I've currently gone down to 15mg as of last week and I'm not seeing anything noticeable that wasn't there on 20mg.

I am still bleeding in a morning and that is a concern of theirs but my HB is improving as is my iron levels so if I can reduce steroids and keep improving in that department then it's a small win for me.

poopydoop - When I mention about state of mind, I think some aspects of it are stress related. I think my Colitis was triggered by 3 events happening at the same time which caused severe stress. I was best man at a wedding, I moved house and I started a business (all in the space of 6 weeks). It was a week after the last event (the best man thing) where my condition started. I'm no public speaker and the thought of it stressed me out no end. It actually ended up going really well but still impacted me mentally quite a lot.

I hope you don't think I was implying people should think they're a crappy person because their mental state of mind is making their condition worse but in the same instance, mental state of mind is much like a disease in that we can't control how we think (a majority of the time) and we shouldn't beat ourselves up over that either. I understand the severe irony of that sentence as well ;)

When I was first diagnosed I spent a month in bed with severe depression. It took my all to sort my head out and get out of bed. I don't beat myself up over it but I do always try to remain positive. Again, my wife plays a big part in this with how understanding she is. My mental state at that point was wondering how I was going to live my life like this but I just kept picking myself up and carrying on. It was one of the hardest things I've ever had to do.

I think my whole statement there was to reassure people who were starting the treatment not to stress themselves out over it. I wasn't directly implying that stress is going to stop the medication working but to put people at ease that my particular experience with Infliximab isn't to be taken as the only experience.

I do appreciate your comments though and I'm glad you're in a better state of mind.

My nurse called today and my Aza levels are back and they're increasing me slightly as my levels are still on the low side. I'm being increased to 175mg.

I think the comment regarding how I am now and would I want to live like this for 50 years is great. We do put up with a lot and we shouldn't have to. This is really corny but I watch shows where they are stranded on a desert island and I'm actually jealous. I'd never actually go on the show or want to be stranded but just to have the chance to survive in that situation without being medically dependent or wondering where I can go to a toilet would be total freedom.

I'm on a stand at an exhibition in a couple of weeks in London and I'm already stressing myself out about toilet accessibility.

I went to a concert for the first time a couple of months back and the toilet situation was great but as I was leaving the arena I didn't go to the toilet. I then walked around half of Liverpool looking for somewhere that was open as I was dying for the toilet. It was the closest I've been to just whipping my trousers down in the middle of the street; I never want that situation again.

In the UK in particular there is a lot of talk around fecal implants at the minute; I'm really hoping some fantastic headway is coming for sufferers of Crohn's and Colitis over the next 2 years as I think there must be something that can switch this disease off as quickly as it appears.

I wish everyone the best of luck in their journey and hope you can regain your life.

Please, if anyone else has any stories which are similar to mine I would love to hear them. Anyone that has been through this then has a success story would be great so I possibly know where to set expectations.

Equally anyone who is going through this and you're suffering then let it all out. I know writing it down has helped me understand what's going on more than just keeping it inside.

Again, thanks everyone for their responses
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