Humira in the UK

[David]

In another thread, someone said that if you are on Humira and achieve remission, that you are taken off of it. Can anyone else in the UK confirm or deny?

Thank you!

 

[Novice]

My doctor was very reluctant to take me off it when in the uk, I had remission but unbearable side effects (came off of it once moved to the states)

Im pretty sure in the UK its more of a timing thing like I knew once id been healthy and on remicade for 12 months or so I would be taken off of it and im sure it worked similarly for humira but im not 100% sure!

 

[rygon]

From the NICE website

1.1 Infliximab and adalimumab, within their licensed indications, are recommended as treatment options for adults with severe active non-fistulising Crohn’s disease whose disease has not responded to conventional therapy, or who are intolerant of or have contraindications to conventional therapy. Treatment with infliximab or adalimumab may be 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 whose disease relapses after the planned course of infliximab or adalimumab is stopped should have the option to resume treatment for a further 12 months.

http://www.nice.org.uk/guidance/index.jsp?action=article&o=46234

I know the docs at my hospital have to follow these, but they do bend the rules a bit as they know that most people do not stay in remission once off the drugs. I started Remicade about 2yrs ago and although in "remission" they will not take me off the drug unless I say so or it stops working

 

[KayleighMeek]

I have been on remicade and humira before and was never told I would have to come off them after a year I was under the impression from my dr it would be indefinite or until the drug failed it must be different in each hospital. Could funding for GI departments in other hospital limit the treatments they can give?

 

[David]

From the NICE website

http://www.nice.org.uk/guidance/ind...s some GIs there bend the rules. Good grief.

 

[elrafantas]

I'm in the UK and on Humira and I've been told about the 12 month thing too, although it's early days for me (I've only been on it 8 weeks but it's working amazingly). I now dread coming off Humira next year as last year I was left with no treatment for months after surgery and my Crohn's came back rapidly and worse than ever with the added hell of arthritis! I can't metabolise Azathioprine so I'm hoping when the 12 month mark approaches I'm hoping I'll have a case to stay on Humira longer :-/

 

[Novice]

Yes its absolutely a funding issue. I was once hospitalized whilst on infliximab/remicade I had a flare a nasty one but they kept me with a hospital bed because by being an inpatient funding for humira would be approved quicker! I remember it taking absolutely months for the infliximab approval and 4 weeks for the humira.
here is the states the dr prescribed it made an appt I called the insurance and they had approved it all within the same week....

 

[Emma A]

Is there a certain time frame your only aloud take Humira for? i never heard of it?

 

[rygon]

Not for safety reasons Emma, just guidelines to save the NHS money

 

[lynzi86]

I've been on humira for 2 years now and my gi hasn't mentioned anything about taking me off it or how long i would have it for. Should i expect to be taken off it soon then?

 

[Grant]

3 years for me & no mention of me coming off it, I still have active Crohns in the rectum but it does appear to have done a reasonable job elsewhere.
Rgds
Grant

 

[HNL29]

I was told about the 12 month thing when I started, and it was explained it's due to funding. However, I will have been on it 3 years in Jan 2014 so there appears to be some flexibility. According to this:http://www.nice.org.uk/guidance/index.jsp?action=article&o=40465 the net price for a 40-mg prefilled syringe is £357.50 excluding VAT, so it's a pretty expensive option.

 

[David]

I bet it is a heck of a lot less expensive for the health system than resection which is where a lot of people will be headed with the way they're currently treating them.

 

[HNL29]

It's not just humira - the 12 month thing applies to a whole variety of drugs over a certain price point. The NHS has something of a funding issue. And yes, the cost of surgery would be higher but may also be a one off cost with a cost free remission period thereafter, whereas humira is a continual ongoing cost. And I've managed to cost the NHS both - 3 years of humira at over £9,000 a year plus a resection at a cost of around £15,000. I often wonder what the personal cost to me would have been if I'd lived in the States and had to pay for insurance.

 

[why us]

I have been on Humira in the UK for about 2yrs for Crohns. It works really well. My consultant has recently left my hsp and the new one I saw has told me I will have to come off this drug after Christmas. I protested as strongly as I could, stating that Pred doesn't work for me and I can't have the full Aza dose. So basically I'd be left on nothing. The consultants letter to my GP suggested politely that I was cross and argumentative. My GP knows me well and knows this is not usually the case and is on my side. Apparently NICE are in charge of the initial prescribing, then it is over to the CCG to decide. Can anyone offer any advice as to what I can do to stay on this drug? Thanks

 

[Grant]

Amazing how it differs either by Specialist to Specialist or Region to Region. I started Humira Dec 2010 & I'm still on it. Plus my original Specialist left & then another one left & now I'm on my 3rd Specialist in 5 yrs.

 

[why us]

I was told anyone who had no major ongoing symtoms, would be taken off it, as other people who do have active disease are more in need. The worry is if you then need to go back on it that it won't be so effective. I did read an article with the results of a trial that proved it to not be so effective second time round, but that a couple of years ago and typically now I can't find it.

 

[24601]

Hi why us,

Really sorry to hear that your new consultant has taken that view.

You are quite right that if you stop Humira (or any biologic) that you can develop antibodies and so it may not work as well or you may not be able to restart.

For most of us it seems that despite the NICE guidelines we are not in practice asked to stop biologics if they are working.

I would ask your GP to give you a referral to another consultant.

Best of luck. Let us know how you go

 

[why us]

I have just had my consultant appointment and subject to colonoscopy being clear they are going to stop my Humira. They are allowing me one further consultation with one of the other consultants. I mentioned the build up of antibodies that could prevent future reinstatement of Humira from working and was told that according to a new study these antibodies will already be present if they are ever going to be, if you are on Humira. I mentioned that the UK,are the only country as far as I know that take you off if you are in remission. I have tried looking for any article, trial based reports that would support me staying on this drug, but failed to find any. Does anybody please have anything that I could possibly use to fight my case? I haven't even found anyone else who has been in a similar situation. I will then basically be left on 50 mg of Azathioprine as that is all I can have due to tpmt levels.

 

[24601]

Sorry to hear that. Is your second opinion going to be with another consultant at the same hospital? Because if I were you I would prefer a second opinion from a GI at another hospital as I think you can be more confident of it being an independent opinion.

 

[why us]

Well apparently all three of the local consultants have to make the decision together and tell my local hospital trust, so I have to persuade one of the other consultants to fight my corner, he is based at another hospital, but part of the same trust. Another consultant from another trust wouldn't have any say unless they see something different on the colonoscopy. I shall only use gas and air for that, so will question anything I see however small. Thanks for your suggestion though.

 

[24601]

As I understand it there is no bar to you asking your GP for a referral to see a consultant of your choice at any hospital for your treatment - even one outside your hospital trust. And since this may be a funding issue within your hospital trust that may well be necessary.

I've not had a problem when I've asked my GP to send a referral to consultants at other hospitals and when I've seen a new GI for a second opinion they've always given me the option of transferring my care.

Some NHS info pages:
How do I get a second opinion?
Can I choose where to receive treatment?

Also some useful info from a booklet on getting a second opinion by Rethink (a mental health charity but I think much of it still applies)

"It is possible to get a second opinion on the NHS. You can get a second opinion within your own NHS trust or an independent second opinion from outside your trust. If you see another doctor in your own NHS trust, you may find this helpful. However, this is not an independent second opinion. "

If you would prefer to continue being treated at the same hospital then it sounds like a referral to a new consultant at a new hospital could be a backup plan, as it sounds like you would need not only the second opinion but to move your care outside your hospital trust.