On Humira not working, any suggestions?

Hi, I am just past the 3 month mark of being on Humira. I live in Northern Canada and we don't have a permanent G.I. I am seen next week by one, thank god. Have any of you been on Humira and it didn't work and then try Remicide? what previous doctors have said to me is that you are either on one or the other, if if that treatment doesn't work then there are no other options other than surgery. Any advice is greatly appreciated.

Don't listen to them if they tell you that your only other option is surgery. That's a crock of crap. Unless your gut is rotting out and you're on death's door, you have options, you just need doctors who are willing to present them to you. I was on remicade first - for 6 years, then it failed and I went to humira. I guess you could try the opposite. Remicade was a miracle drug for me. Have you tried modifying your diet at all? When I was at my worst (on surgery's doorstep) I learned about the Specific Carbohydrate Diet and it totally turned things around for me. I still stayed on all of my meds, but the diet did for me what the meds were unable to do. Some people have tried it and say it doesn't work for them, but I figure you have nothing to lose by trying. Anyway, there are other medications also. How bad is your disease? What meds are you currently taking?

1. Recent research suggests that you should try all three currently available Anti-TNF alpha drugs before concluding that they will not work for you.

2. Refractory CD (CD that doesn't respond to medical treatment - as opposed to surgical treatment) is tough to manage without multiple surgeries to remove severely disease sections of bowel. So they may - only may - be right about surgery. I am not a doc and cannot advise you on that.

3. If you haven't tried methotrexate then that is another drug to try either alone or in combo with a new anti-TNF alpha.

4. My son took about 5 months to fully respond to Humira. So it may be that you need longer because you are sicker. But I would have thought you would have seen some signs of improvement by now.

5. What dose of Humira are you on? You could try a higher dose and more frequent administration - that would be 80 mg every week.

6. Enteral feeding is always an option for rapid treatment. It is at least as effective in children as prednisone and, unlike prednisone, results in mucosal healing.

I'm sorry to hear you are so sick. It must be especially hard to be so far from specialized medical care.

Best wishes - I hope the GI has something more to offer you.

and one more thing Humira may take longer then 3 months to work.

I was on Humira for almost a year and it didn't work. I've had 3 Remicade infusions so far... doing better but I'm also off work right now.

You need to give the Humira more than 3 months to kick in. What's your dose? If you're taking 1 shot every two weeks, maybe your GI can bump it up to 1 shot every week.

Hang in there!

I would see if they will let you do a decision tree that looks something like this:

Give Humira one last try rather than abandon 3 months of meds and time by doing one (or all) of these things:

1. Re-do loading doses (160 mg then 80 mg 2weeks later)

2. Increase Humira shots to 80 mg weekly or

3. Increase Humira shots to 40 mg weekly

If you start with step 1 and see response then I would campaign for going to step 2 until it was clear you were in good remission and then back off to step 3 or even go back to the standard dosing of 40 mg every other week and see if that will hold you.

If you re-do the loading doses and there's no change then I think you could say that Humira is not going to work for you.

Depending on your situation the next med to try would be Cimzia (1 treatment of 2 injections each month after loading doses) or Remicade (IV infusion - dose and frequency vary after loading doses based on clinical response)