Beginning Humira with a known stricture?

[Allison]

My husband's GI wants to start him on Humira to try and get him into remission. (He was diagnosed with Crohn's about six years ago and has been on Entocort ever since, with Pentasa recently being added.) His colonoscopy in January showed that he has a stricture that has formed since the colonoscopy six years ago. I can't remember the size, but the doctor said he barely got the scope through and that if he were to have the capsule endoscopy now (which he doesn't need, but is how the Crohn's was originally diagnosed), it definitely would not go through.

Anyway, in my research I came across an article on preparing for biologic therapy and will post the paragraph & highlight the part that causes concern:

G&H Overall, what are the most important steps clinicians should take to prepare patients for biologic or immunomodulator therapy?
SVK First, clinicians need to make sure that they have identified the right patient for the drug. Many patients have irritable bowel syndrome or a known stricture, but they are prescribed a biologic agent anyway; in these cases, patients are being exposed to all of the drug's risks and getting none of its benefits. Once the clinician has decided that a patient truly has active IBD, then he or she needs to educate the patient about the risk-to-benefit profile of the drug. Part of the educational process is to explain all the therapeutic options that are available; in addition, patients need to understand that the goal of biologic or immunosuppressant therapy is to make them feel better, that steroids and narcotics are associated with worse outcomes if they are used long term, and that withholding therapy and allowing the disease to remain active leads to worse outcomes.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3264940/

So, I was startled to read that and wanted to come here for opinions on what we should do. We already have insurance approval and the Humira nurse has left a voicemail about getting him started on his first dose, although it's not set up yet.

Thanks so much, and any input is appreciated!

 

[Allison]

I should add that, obviously, I realize we should speak to his GI - but it is just difficult to get messages through - we'd have to go through the nurse, and this just seems like something that should be discussed more thoroughly than over the phone. He has a follow-up appointment scheduled, but it is still weeks away and the doctor is probably booked up until then anyway.

 

[Clash]

I would assume, only reading this paragraph, that they are speaking of a stricture due to scar tissue, which no medication can resolve. On the other hand, if a patient has narrowing due to active inflammation biologics can be extremely effective at resolving the inflammation and this the narrowing.

With a stricture that is due to scar tissue the med, any med, would be useless. If the stricture is due to scar tissue and is causing partial obstructions or other issues then surgery is usually employed to either remove the area or a stricturplasty to expand the area.

 

[Clash]

In the link you posted, this statement refers to what I posted

Likewise, patients who have pain, nausea, vomiting, and possibly diarrhea should be assessed for fibrostenotic strictures and are not candidates for biologic or immunomodulator therapy.

They mean that no amount of therapy will resolve the fibrotic (scar tissue) narrowing (stricture).

 

[Layla]

What Clash said.
I have strictures and am on Humira hoping to stop the inflammation which would resolve the strictures.
I've had previous strictures surgically removed as they were due to scar tissue from having inflammation for too long (years).

 

[Allison]

Clash and Layla, thanks so much for your words of wisdom! He's not needed surgery so far (although the GI said he will unless things get under better control), so hopefully the stricture is from inflammation? I hope the strictures are not, as Layla suggested, from being inflamed for too long, and Layla hopefully your strictures will be resolved also with the Humira.

 

[JackG]

I've had two strictures in the past six years and was hospitalized 3 days for each. Originally thought to be blockages, my GI instead both times drained my stomach and used steroids to calm the inflammation down. Both times it occurred at the site of my ileostomy 34 years ago.

As a result of these incidents my GI judged my Pentasa as no longer effective and put me on Humira. Now I've gone three years without that kind of trouble. I have, however, gotten a lot more sensitive to ice cream and regular coffee (can you imagine losing both in one life?).

One exception seems to be Peppermint Candy ice cream, though I don't eat much.

 

[hcrum87hc]

I'm on Humira and Imuran with a couple fibrotic/scar tissue strictures. The meds aren't used to heal those strictures, but they're used to prevent inflammation from building up along the strictures and causing a total blockage. I can live with my current strictures on a low fiber/residue diet as long as my inflammation is under control. I'm just coming off a bad flare due to me tapering Entorcort too soon without allowing the Imuran to fully get into my system, and there were several days during the flare that I had to stick to a 50-75% liquid diet in order to not be in terrible pain.

 

[JackG]

hcrum87c, that's what Humira does for me too. I've also had that area either side of where my appendix was expanded a couple times during a colonoscopy. Sometimes when I'm very unstable and feeling poorly I use Metamucil and it helps a lot. Other people have told me they can't take it.

 

[Allison]

So, my husband has had two doses of the Humira so far.

After the initial dose of four shots, six days later he developed severe abdominal cramping that lasted from afternoon til about midnight, then it gradually eased off.

He had his second dose of two shots on Friday night (two days ago). Less than 24 hours later - Saturday midafternoon - he again developed the severe abdominal cramping & nausea, and this time it did NOT go away. After a long night of agony, he finally agreed to go to the ER this morning at 6 a.m. and we were there until early afternoon.

They did a CT scan to check for obstruction, but all it showed was adhesions with edema.

The ER doctor called his GI doctor to discuss scan results, and the GI had him start Prednisone, Cipro, and Flagyl, and also gave him anti-nausea and pain meds.

His GI does NOT think Humira is the cause of these episodes and wants him to continue them as scheduled (along with the Pentasa that he was already taking, but stop the Entocort).

He has a follow-up appointment on Wednesday and I want to go along and discuss this further.

If it were you (any of you), would you continue the Humira?

 

[my little penguin]

Ds has had severe abdominal and nausea
That is quite common with crohns
Second thing to consider would be not that humira is causing it but wearing off and the entocort is not enough to hold your DH
It seems like your DH Gi is think something else since he didn't just add pred but also added two abx ( cipro /flagyl ).
It sounds like your DH disease is not under control and your DH Gi is trying to get him there
Humira takes 3-5 months to even build up and become effective .

I would ask your DH Gi what the plan for the abx and pred combo were for and when the doc would expect for humira to take over

 

[Allison]

Thank you, My Little Penguin, for the reply! I am so sorry for what your son has experienced; nothing is worse than seeing our children suffer.

My DH has only had about three short episodes of this overwhelming pain and nausea in the six years since he was diagnosed, so this is not normal for him.

I did question the ER doc about why the two antibiotics and he said it's more prophylactic, since the intestines are so prone to developing infection. I guess the Prednisone is for all the inflammation that he apparently has.

After he sees the GI on Wednesday, I'll tell you what he says.

 

[penelope-marie]

Thank you, My Little Penguin, for the reply! I am so sorry for what your son has experienced; nothing is worse than seeing our children suffer.

My DH has only had about three short episodes of this overwhelming pain and nausea in the six years since he was diagnosed, so this is not normal for him.

I did question the ER doc about why the two antibiotics and he said it's more prophylactic, since the intestines are so prone to developing infection. I guess the Prednisone is for all the inflammation that he apparently has.

After he sees the GI on Wednesday, I'll tell you what he says.

Allison that sounds a very confusing situation

 

[penelope-marie]

Allison that sounds a very confusing situation

I would certainly ask again if the humira could have caused those 2 episodes of pain, and if not, then what did? There has to be some explanation. I wonder if it has happened to other people? I am in a similar situation to your husband in that I have a scar tissue stricture and my GI doc is suggesting humira. But he has also said it could narrow the stricture, I suppose because if there was inflammation which heals then more scar tissue might develop? Has your husband had blood tests for inflammation? Also I would want to ask them about the combination of the four drugs, steroids, 2 antibiotics plus humira. Would you consider stopping the humira until you have seen if the other medication has any effect first? (Apparently they now say there is not a problem with stopping and starting it)
I really wish you both good luck in getting on top of this,and sorry I can't help more

 

[Allison]

Penelope-Marie (what a beautiful name!), thank you for the comments. I agree, it IS confusing... and it sounds like your situation is also. I am on here making notes of things to remember to ask at DH's appointment this afternoon.

He is doing SO much better now. He hasn't needed a pain or nausea pill since late Monday night, and he returned to work yesterday. The Prednisone and antibiotics have taken away his sense of taste, though. Yuck!

 

[penelope-marie]

Allison, I am so glad he is feeling better. I hope you get some answers or some clarity. It seems to be one step at a time with this nasty condition. All the best, let us know how you get on

 

[Allison]

I forgot to update on my husband's GI appointment.

After hearing the full story, his doctor agrees that he is probably reacting to the Humira and does not want him to risk a third reaction, given the severity of the second one. So he extended the 5 day course of Prenisone to two months, at which time he will repeat the scan and then decide what medicine to try next.

He wants to continue a conservative treatment in hopes of postponing surgery, which sounds good to us, however we're now a little gun-shy! My husband is not one to really react to medicines and we did not expect any trouble with the Humira. The doctor mentioned Remicade, which sounded like a possibility until my mother mentioned a friend who had a near-fatal reaction to it. :eek2:

I think doctor said Stelara might be a good option but there was something about it (I don't have my notes right here)... is it not available yet for Crohn's? Whatever the reason, he thinks it will be available in the near future (if that's not correct about Stelara, then it's some other med that I can't remember).

Anyway, that's the update. Poor DH is feeling awful from Prenisone side-effects, and the Flagyl and Cipro aren't helping either (I mean, the flare IS under control -- just the nastiness of all the meds).

 

[penelope-marie]

It's a good thing you persisted then,after them saying it couldn't be the Humira! My fear about it for me is the effect on my immune system, when I have a job that involves mixing with the public, as well as what I said before about possibly narrowing the stricture. Also at the moment my tests do not seem to show much inflammation so I can't see how we would know if it is having any effect or not.

I have been on Flagyl and it is a drug which is effective but depressing. All I could do when I was on it was read thrillers and crime mysteries - anything to distract myself! Has your husband considered any Elemental food, which gives the bowel a rest so it can heal? I've been using it on and off for some time. So far I've avoided both surgery and steroids but I think I may be getting nearer to the time when the stricture gets too narrow and then there's no choice.

Best wishes and hope he feels better after the treatment - at least the flare is under control, which is great news.

 

[Allison]

Thank you Penelope-Marie, and I apologize for not replying to your comment sooner! I suppose you are finished with your course of Flagyl? How are you feeling?

My husband is starting Remicade -- right now! We are at the infusion center and he is getting his first treatment, so I hope and pray it will go better than the Humira did!

 

[ronroush7]

Best wishes

 

[Allison]

Thanks so much Ron! So far, so good! Will keep you posted. And how are you doing?

 

[ronroush7]

Going to the bathroom a lot. I went for tests today to see if the Humira is working. I go to my specialist in two weeks.

 

[Allison]

Praying for you, Ron, that the Humira WORKS!

 

[ronroush7]

Thanks ,Allison.

 

[aypues]

Going to the bathroom a lot. I went for tests today to see if the Humira is working. I go to my specialist in two weeks.

What test do they do to see if the Humira is working? Do they test your blood level of it?

 

[ronroush7]

They did blood work and a stool sample. Not sure if they were checking the level of Humira or what.

 

[Derickma]

I have 2 strictures caused by the inflammation and I don't think it helped .. I do genuinely feel better in regards to my symptoms but in all honesty it depends on how his body reacts to it.

 

[penelope-marie]

Allison I hope the remicade was okay for your husband and all is going well. I am now being told I should go on Humira but I'm reluctant because of all the problems, though I know people have been really helped as well. I have just spent my summer holiday in hospital as I got an abscess which had to be drained, and now my doc is saying humira would heal my bowel and prevent this happening. But he also said that if you do get an abscess when on the drug it will be much worse. Also he said it could make my stricture narrower, so I'd end up having to have a resection anyway. So how does anyone make an informed decision??