Humira but what next?

[hurricanesdad]

Hello, I am new to this and am actully the spouse of a crohns sufferer. Hopefully people can give us some advise as we are currently having a tough time with crohns flare ups.
My wife is 38 and suffered with the condition for the last 20years up until recently she was treated using steriods which were used to get the condition under control and then she would be crohns and medication free until next time it reared it's head. The condition seemed to worsen early 2011 and they started using inflixmab(april 2011) which worked great but she was only given the inital treatment and it was not maintained when they then decided to put her back on inflixmab the body had built up antibodies and she had a reaction which means no more inflixmab. This was back in August and is now on Humira and has been since mid october-ish, at the same time as injecting Humira she is still taking steriod,Prednisone. They have been reducing the dosage so that today is the first time without any steriod but she does not appear ready for it and we are both worried as to what the coming days will bring. Does anyone have any experience or able to answer the following,
a) Does taking steriods at the same time of humira prevent it from working effectively?
b) How long does it take for Humira to kick in? (We have been told three months - we have seen some improvement but all the usual symptoms are still going strong)
c) How long do they tend to give Humira to work and at what point do they decide to move onto the next step?
d) Finally am I right in thinking the only option left after humira is surgery?
Any help we can be offered would be appreciated and look forward to hearing any of you.

 

[beth]

a) no
b) 4days/3months/6months/maybe never.
c) pass, you'll have to ask whoever 'they' is
d) depends on what country you are in. UK yes, US, cimzia, tysabri

Only starting Humira mid-oct is too soon to be jumping to conclusions, it wont have ramped up as far as it's going to and coming off pred wont be helping. Timing wasn't probably the greatest. Still. Coming off the pred will not be easy, so gently and slowly does it especially if she has been on it some length of time. Surgery may be required, depends whether she has inflammation in one or many places - the latter would mean 'all or nothing' or even inoperable if she has Crohn's throughout the entire intestines.

What dose Humira is she one, fortnightly or weekly injections. Weekly is far more effective and worth pushing your doctors for - but ask, or guide, the doc's nicely. I went on to weekly about month 5.

Other adjunctive/maintenance drugs are Azathioprine and methotrexate, has she been on any of them?

 

[hurricanesdad]

She has been told she must come off the pred but has been reducing the dose for the last few weeks, was 6x5mg tablets then a week at 5 then a week at 4 etc etc.
The humira is fortnightly 40mg and is also on azathhioprine 4/day x 50mg. No one has actually mentioned we can have humira weekly...
We saw a surgeon earlier this year who advised surgery may not be the best option as unclear if it would "cure" the condition - for the reason you have said it depends upon exactly how much of the intestine is affected (no one appears to actually know even after all these years)
We are trying not to jump to conclusions on humira but you may know just how desperate you become after months and months of been ill, you just hope for a miracle cure
Oh and yes we are in the UK.

 

[beth]

200mg of aza a day is a pretty good dose, combined with Humira she's on well 'heavy guns'. Humira is very good on it's own, but for a small percentage, maybe as high as 30%, the biologics simply don't work. It might be the body is too good at producing antibodies to it and it's in these cases combining with aza helps slow that process. Given that's already happened with infliximab... well keep your fingers crossed and give the humira/aza plenty of time, at least 6months, before writing it off - there isn't much else other than surgery.

As to weekly injections. Some hospitals & PCT's don't like weekly, but allow 2 injections a fortnight - I'd do them weekly, just not tell them that's what I was doing! Others will approve every 5 days for short periods to access response just to avoid people ending up in hospital - which costs far more than a few pens. When I suggested weekly to my doc's I was getting a response to each injection but it didn't last. Talked to my IBD nurse, who got me in to see one of the registrars, and my approach was: 'this is happening, how can we make it last the fortnight, or can I go to weekly injections?'. So whilst the ball was in his court we gently planted the seed. He then talked to my consultant and the PCT and after a week it was approved. The difference was brilliant, each week I got slightly better and it stayed throughout the week, so the following injection was building up more energy/etc. Due to cost the doc's are not necessarily going to tell everyone they can go on weekly injection

Tests should show where, and how badly, the bowel is inflamed. Colonoscopy for the large, TI, and occasionally the bottom of the small bowel. CT/MR with barium contrast, called small bowel follow through will show up everything else. They shouldn't need to guess.
The more diffuse, more places, there is active inflammation the less likely surgery is of fixing the symptoms without introducing more complications, but you are probably aware of that already.