Humira UK and 12-month dilemma

[Sami]

Hi there

Any UK people on Humira tackled/tackling the same issue?

Had major Crohns relapse last year and consultant bit the bullet and put me on Humira. Been on it since last Nov. Since I've got steroids out of system (Jan) it worked brilliantly. I feel much better and there's only mild inflammation in my bloods. I have had a little wobble in last few days so I know I'm on a knife edge.

Today I've seen my consultant for the first time since doing on drug. Basically the whole session was him informing me how his hands are tied with regards to the 12 month licensing by NICE of the drug. I'll either need to stop it and get anxious and i have no doubt relapse, then go through the application again and/or have to undergo invasive tests (colonoscopy via my ostomy) which have caused me relapse in the past..... Or hope that from now on I still show mild signs of the disease and my consultant can sell my case.

This is all very frustrating as I've got myself into a positive frame of mind and would prefer not to have this on the horizon.

I know it's expensive but feel aggrieved that some conditions are classed differently to others. 12 months isn't long at all. The NHS is going down the pan if this type of financial decision is swaying medical common sense. Especially frustrating having seen the waste in system. I work other public sector so know its tough. If there was a mechanism I'd consider part funding.

Any advice from others? MPs been any use?

Thanks

 

[Hendaz85]

Hi Sami,

What a dilemma you have but I can't understand why your nhs will not allow the treatment for 12 months. I was on Humira from August 2011 - October 2012. At no point was the cos of treatment am issue. I chose to stop the injections as I had been symptom free for the whole time I was on Humira however within 4 weeks I had another flare. I was started back on Humira and eventually had to go to weekly injections. Unfortunately now the Humira has stopped working for me and I am now having to have surgery. I regret stopping the Humira back in October as I think that was the start of my problems again.

I would defonately seek advice for this one as if it is doing you good, then the cost of he treatment should not be an issue especially as othe parts of the country does not have this problem.

Good luck !!

 

[KayleighMeek]

I though this sounded strange as well that they want to stop after 12 months especially if you got ill again if stopped hospital stays/ surgery would cost them a lot more. Prevention is better and if its working I think they should fight for you stay on it. I hope they don't stop this and you can continue feeling well.

 

[Sami]

Apparently it's the new rules nationally, people who were on it before NICE's ruling are the lucky ones. I wonder if different NHS Trusts are somehow applying it differently depending upon their financial situation? Mine has a £10bn black hole I think.

Thanks. I will definitely fight it, just could do without the stress. Keen to hear from others too.

 

[purdueCrohns]

They are pretty dumb because if you go off Humira you are more prone to developing a resistance to it and not be able to take it in the future. I would do everything in your power to not stop taking humira.

 

[cosmic dave]

Ive just started humira and im in the UK. No problems getting the drug for me and no talk of stopping it. It does work very well so far but I have noticed im always hot now ?

2

 

[PsychoJane]

Wow, so I had to google it to see how weird it is that they there is a 12months mark for you guy. Even though I'm not a fervent fan of anti-tnf in general, most literature I've read does mention that you are more likely to build antibodies to the treatment if you stop it and then restart. It feels weird to see that they are taking you of if the disease is in remission. Here, it is the other way around, we have a 12months limit but it is if you are not responding that they stop treating you with it, not the other way around :/. Is it easy for your doctor to pretend there is mild but active disease to keep you on it at the 12 months mark?

 

[Sami]

Thanks for the replies. Anyone else facing this dilemma and had success? Are NHS trusts without such a financial mess making more pragmatic decisions?

My doc will have to prove that I have underlying disease still. Hopefully this can be done without stopping drug and/or colonoscopy. I'd have to have it through tummy and have history of this procedure starting a flair up. My ESR is still not fully down and i have a small abscess wiund thats re-openeded.... ironic that i hope they both stay this way..Apparently there's a test waiting to come on line that the decision makers will accept.

It is all frustratingly counterintuitive