Elegibility for anti-TNF medication on the NHS in the UK

[M101]

Hi all

I was wondering if anyone knows the elegibility criteria to get anti-TNF medication on the NHS in the UK?

I was diagnosed with Crohns about a year ago. Tried Pentasa for a few months, was on Prednisolone for a few weeks and have been on Entocort now for 8 months. I started Azathrioprine about 5 weeks ago but had to come off it after 2 weeks and now i have been on 6MP for 2 weeks.

In the meantime, the reason I came off the Azathrioprine is because I suddenly woke up and couldnt move my neck at all, it was completly stuck. My specialist initially thought I had meningitus from the Aza and took me straight off it and put me on 6MP a week later. In the meantime, I have seen a rhumatologist and had MRI's of my Neck and Lower Spine (I keep getting a pain in the bum too and have difficulties walking) and have been diagnosed with Sacroiliitis. I had a problem with an arthritic joint a few months before I diagnosed with Crohns, which looking back was the first sign of my Crohns.

The rhumatologist claims that the only drug that will help my Crohns and Arthritis now is anti-TNF medication. He said it will switch it all off and because I am so young (25) he thinks this is the best for me. He claims that 6MP will not get rid of the arthritis, and although he has given me more prednisolone to get me moving in the meantime, we are very aware I have now been on steriods for 8 months and he says that it will come back when the steriods stop (even though its not completely gone with the Pred!).

He doesnt believe I will be elegible for TNF based on my Sacroiliitis alone, but he couldn't comment re the Crohns also. He is going to look into getting me into a clinical trial, but is concerned I wouldn't be elegible because of my Crohns.

Does anyone know what the criteria is to get this medication on the NHS? I kneed to talk to my gastroentrologist but because I have recently had to convert from seeing him privately to the NHS because my GP wouldnt prescribe the 6MP for me, I have lost all my support and am not able to call him like I used to. I should be seeing him in the next few weeks when I get an appointment through.

If anyone can advise that would be great. I am so fed up of this now!

Thanks

M xx

 

[DustyKat]

I think if you google NICE guidelines for Crohn's you will find what you are looking for:

Infliximab and adalimumab
The recommendations in the following section are from Infliximab and adalimumab for the treatment of Crohn's disease (NICE technology appraisal guidance 187).

1.2.12 Infliximab and adalimumab, within their licensed indications, are recommended as treatment options for adults with severe active Crohn's disease (see 1.2.17) whose disease has not responded to conventional therapy (including immunosuppressive and/or corticosteroid treatments), or who are intolerant of or have contraindications to conventional therapy. Infliximab or adalimumab should be given as a planned course of treatment until treatment failure (including the need for surgery), or until 12 months after the start of treatment, whichever is shorter. People should then have their disease reassessed (see 1.2.15) to determine whether ongoing treatment is still clinically appropriate.

1.2.13 Treatment as described in 1.2.12 should normally be started with the less expensive drug (taking into account drug administration costs, required dose and product price per dose). This may need to be varied for individual patients because of differences in the method of administration and treatment schedules.

1.2.14 Infliximab, within its licensed indication, is recommended as a treatment option for people with active fistulising Crohn's disease whose disease has not responded to conventional therapy (including antibiotics, drainage and immunosuppressive treatments), or who are intolerant of or have contraindications to conventional therapy. Infliximab should be given as a planned course of treatment until treatment failure (including the need for surgery) or until 12 months after the start of treatment, whichever is shorter. People should then have their disease reassessed (see 1.2.15) to determine whether ongoing treatment is still clinically appropriate.

1.2.15 Treatment with infliximab or adalimumab (see 1.2.12 and 1.2.14) should only be continued if there is clear evidence of ongoing active disease as determined by clinical symptoms, biological markers and investigation, including endoscopy if necessary. Specialists should discuss the risks and benefits of continued treatment with patients and consider a trial withdrawal from treatment for all patients who are in stable clinical remission. People who continue treatment with infliximab or adalimumab should have their disease reassessed at least every 12 months to determine whether ongoing treatment is still clinically appropriate. People whose disease relapses after treatment is stopped should have the option to start treatment again.

1.2.16 Infliximab, within its licensed indication, is recommended for the treatment of people aged 6–17 years with severe active Crohn's disease whose disease has not responded to conventional therapy (including corticosteroids, immunomodulators and primary nutrition therapy), or who are intolerant of or have contraindications to conventional therapy. The need to continue treatment should be reviewed at least every 12 months.

1.2.17 For the purposes of this guidance, severe active Crohn's disease is defined as very poor general health and one or more symptoms such as weight loss, fever, severe abdominal pain and usually frequent (3–4 or more) diarrhoeal stools daily. People with severe active Crohn's disease may or may not develop new fistulae or have extra-intestinal manifestations of the disease. This clinical definition normally, but not exclusively, corresponds to a Crohn's Disease Activity Index (CDAI) score of 300 or more, or a Harvey-Bradshaw score of 8 to 9 or above.

1.2.18 When using the CDAI and Harvey-Bradshaw Index, healthcare professionals should take into account any physical, sensory or learning disabilities, or communication difficulties that could affect the scores and make any adjustments they consider appropriate.

1.2.19 Treatment with infliximab or adalimumab should only be started and reviewed by clinicians with experience of TNF inhibitors and of managing Crohn's disease.

http://publications.nice.org.uk/crohns-disease-cg152/guidance

It is quite a lengthy document and I have linked you a few pages in so you may like to go back and read the whole guideline.

Dusty. xxx

 

[rygon]

you will find a lot of people who are on infliximab or humira in the UK.

When aza stopped working for me the next step was infliximab. I was told to start the drug they need to try other cheaper drugs 1st (pentasa and aza) and still have moderate to severe crohns. As I had these I was eligable to start the drug. I wouldnt say it is perfect for me as I still struggle some days, but it is much much better than I was before

 

[M101]

Thanks guys - thats really helpful. I read the NICE guidance and it seems TNF comes in when everything else fails... but I cant seem to find much out about what happens when theres 'extra intenstinal manifestations'? Hmmm.

Thanks again, really appreciated.

M x

 

[DustyKat]

EIM's are calculated in the CDAI:

http://www.crohnsforum.com/wiki/CDAI-Crohns-Disease-Activity-Index

 

[purdueCrohns]

One of my friends moved from the UK to the US for temporary work duty. He ended up staying in the US because he was able to get on the TNFs in the US but not the UK. If you get desperate there is that option