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Biologics and disease located in the rectum- experience please?

Lady Organic

Moderator
Staff member
I would like to know of your experience with a Biologic agent (Remicade, Humira, Stelara, Vedo, etc) and rectal healing.

My disease always starts in the rectum and goes up in left colon and I am again in a debuting flare right now. I feel like I am done playing limbo with 6-mp. At 50mg it was keeping me in remission but it had to be reduced at 25mg/day for toxicity issues. relapse of disease. We tried 50mg twice a week as an increase with 5 days at 25mg, no success, flare again. Now my GI is suggesting 50mg / 6 days a week and 7th day off. Frankly I dont believe much the toxicity test will pass in a few months on that amount but its worth a try I guess. My GI really surprised me with this proposition. I am continuing the 5-asa rectal therapy as well even if I feel it does nothing for me.

My GI who I have great confidence in is an IBD specialist and wants to try everything possible with 6-mp before trying a biologic for me. He mentionned to me that rectal disease is sometimes refractory to biological therapy. ''I have observed some patients with pancolitis who have healed all colon with a Biologic but then the rectum remains in disease activity.'' I havent asked about what % of patients. I was sad to hear that. I have no other option left aside from Biologics if i fail again 6-mp. Methotrexate has failed for me. Switching from another big medication is already very scary to me and i am discouraged if on top of it it may fail to heal my rectum... I am building up a resistance to prenisone as well I notice with the last 2 flares, another thing that scared me:( Pred now takes 3 weeks to kick in and it used to be effective in a couple of days in my beautiful days...

Experience anyone with a Biologic and rectal disease activity?
thanks!
 
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Lisa

Adminstrator
Location
New York, USA
When I went on Remicade, I had active disease at the rectum, including fistulas. Remicade took care of my issues, and I've been on it since 2005!
 

my little penguin

Moderator
Staff member
Ds had active disease in the rectum and other places including Ti at diagnosis
1 year of trying everything else
Nada
Switched to remicade and rectum got so much better
Had to switch to humira after 8 months due to allergic reaction
But humira kept his rectum calm for most of 5 years
A few minor flare ups here and there
He just started Stelara
So can't say what that one will do yet
 

Maya142

Moderator
Staff member
My daughter also had rectal disease at diagnosis - she had many small ulcers in her rectum (and through the rest of her colon). After 8 months of Remicade + MTX, her colon looked perfect - like a healthy, normal colon! There was still some inflammation in her terminal ileum, but even that was MUCH better.

She has been on several biologics and her rectum has stayed under control. She has had minor flares, some of which we treated with hydrocortisone enemas or suppositories, but for the most part, biologics have kept everything under control.

There are many more biologics now and if 6MP is no longer working for you, I wouldn't hesitate to try a biologic. It may make all the difference.
 

Lady Organic

Moderator
Staff member
I thought I was at this point too, but my GI really prefers I try everything possible with 6-mp. I think he hopes my flare goes into remission because it is so minor still at this point. So he is not worried at this point yet. But I am worried of course! I have a sigmo scheduled for friday. Since I used to respond so well to 6-mp with absolutely no side effect, it would be a heartbreaker having to give up on it. So we hope the increased dosage wont be toxic. I am pretty positive 6x/week at 50mg can bring me back to remission. Its been only 2 weeks now since increase and I think I feel and see a difference. (I have always had fast response to 6-mp). The problem is the toxicity issue. My GI asked for the 6-mp metabolite test to be done in January... If a miracle happens maybe I will pass the test:dusty:

My biggest fear with biologics would be a bad reaction in my joints. I have a hard time psychologically dealing with joint issues. This is more difficult for me than handling the IBD. I'd go with Humira. Sometimes when I feel positive, I think maybe it could even help my joints, but other times I feel scared it could increase the pain. And other times, I think it maybe wont change anything in my articular situation. I guess I will know only if i try it!
 

Maya142

Moderator
Staff member
I haven't heard of many people having worsening joint pain with biologics - typically people who have arthritis related to Crohn's or UC feel a whole lot better on biologics.

The exception would be if you developed something like drug induced Lupus from a biologic (it's most common with Remicade, but even with Remicade, it is pretty rare) - that could increase joint pain.

For what it's worth, both my girls have arthritis (Ankylosing Spondylitis) and have done really well on biologics. I don't know where they'd be without them - definitely in wheelchairs, with a lot of joint damage. Both girls have SI joint and hip damage (younger one also has jaw and knee damage) but neither have needed replacements yet or major surgeries.

My husband, on the other hand, has never been on biologics and has LOTS of joint damage. Many hip replacements, fused SI joints, partially fused spine, fused ankle, damage in his knees...The difference between his joints when seen on x-rays and the girls' joints is incredible. Biologics really do work.

We also know LOTS of kids and young adults with juvenile arthritis - some with juvenile spondyloarthritis and some with IBD associated arthritis. I can't think of a single case of any of them doing worse with a biologic...

Good luck with 6MP but know that you have lots of GOOD options left.
 
@Lizzie:

Did you read it in medical literature or experience from people?

I remember now also my nurse telling me that few years ago :(
I've read it quite a few times in medical literature, stuff I can barely understand to be honest, probably when I've been freaking out about my illness and trawling through the PubMed papers.
 

Lady Organic

Moderator
Staff member
Ok so after a few years of struggles with unconclusive prednisone and purinethol trials, I am at the point of turning to Biologics. Humira is my choice and I shall start it shortly after my colonoscopy next week:shifty-t: I was interesested in participating into the Qu Biologics SII trial here in canada, but after a very difficult year (physically and psychologically) , I opt for the easy path and best chance of fast recovery. I just want to move on with my life asap and have things the least complicated possible. I need a break of troubles. I used to be very afraid and unwilling to start biologics, but I accept it now and I actually cant wait to have my first doses:)
 

Maya142

Moderator
Staff member
I'm so glad Lady Organic - I hope you will be feeling better SOON! Just a reminder - everyone responds differently. Some people feel better hours after their shots (typically you start with 4 Humira shots as a loading dose) and others take months.

My daughter took 6 months and needed Humira weekly and we had to add MTX before she responded. But once she did, it was like magic. She has severe arthritis and the pain just vanished (mostly - her damaged joints continued to hurt). Her IBD also responded extremely well to anti-TNFs.

Good luck!!
 
Location
San Diego
Excellent! I resisted biologics for a long time too, but once I ended up in the hospital with severe extra-intestinal manifestations I knew it was time to get serious with the Crohn's. So far I have not regretted getting on the biologics. Good luck!
 

Lady Organic

Moderator
Staff member
thx guys! Hoping I'll be a fast responder or I 'll have to take pred again, my situation is getting quite urgent and I simply cant let it go downhill :poo: And all the cortisone rectal suspensions (enemas, foams) are currently back order in canada):frown: I had been surviving on those for the past 5 months...
 

Lady Organic

Moderator
Staff member
Had a full colonoscopy two days ago, was awake the whole time, despite sedation. It went super well, could watch and talk the whole time, even saw the small intestine for the first time (cool looking organ). I have moderate activity in rectum only, looking like UC, as usual. I am surprised the disease has not spread above 20cm as I have been in a flare for a good 6 month now... Well I was happy with that, at least. Im starting the 4 loading doses tomorrow at a Humira clinic with compassion program for a faster intervention treatment :shifty-t: I feel privileged to have such good and rapid interventions, and I like my GI a lot for always taking me seriously and never wasting time.
 
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Lady Organic

Moderator
Staff member
Just letting you know guys that I am doing really well on Humira. :dance: In the days fallowing loading doses, I saw a rapid improuvement (it was quite spectacular honestly, like the fallowing day.). I think I hit the jackpot :dusty: I was on my way to remission very fast, without taking any cortisone :biggrin::grr1d:. I think I am pretty much in complete remission by now. I also have no side effect so far with the medication. I am still on 6-mp and although my GI suggested I would drop it eventually, I feel not so enthousiast about this. Maybe I would decrease it, but not stop it completly. I have the inner feeling 6-mp could protect me from side effects of Humira. I have given up on wanting the safetiest plan for the long term and just want now to be disease free. I am tired of always going through medical issues; the last year has been really difficult for me. I just would like peace of mind for a long while. So if I found an equilibrium with 6-mp and HUmira, I feel I will keep the combo for as long as it lasts. Thanks for reading!
 
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