Hi I was diagnosed Apr 18. I've been reading about early combination therapy using Enbrel and MTX is this option available on the UK NHS?

[Custard]

Hi I was diagnosed Apr 18. I've been reading about early combination therapy using Enbrel and MTX is this option available on the UK NHS?

(I havent seen a specialist yet still waiting for an appointment )

[Hidden]

Hi there, how aggressive your RA is at the moment will depend on what combination of drugs your consultant will prescribe for you.We are all different in what works for us and in what combination. As far as I am aware Enbrel and MTX should be available for you on the NHS.

mand xx

[Custard]

Hi Mand,

Thanks, I havent seen a consultant yet. I have been given an appointment date in June which is scarey as I'd already waited 4wks for the hospital to even give me a date!!

I've been reading the NICE recomendation that suggests not to offer this combination unless you've failed to respond to MTX on its own. Which defeats the purpose of 'early' aggressive treatment - so am wondering whether anyone anywhere has actually been offered this early treatment?

[Hidden]

The thing is some Rheumatologists have a different approach to others, generally MTX is started with something such as plaquenil both of which are dmard's. Lots of people on here are on that combination, Anti-tnf's are only given/tried when others have failed as they are aggressive treatments and can be expensive.

NICE do have those recommendations, whether anyone as ever gone straight onto MTX and an Anti-tnf I don't know, very unlikely.

mand xx

[annie64]

Hi Custard I had to fail 3 conventional drugs before i was offered enbrel but my consultant was really good -i think there hands are tied because its expensive and you have to jump through the hoops before you are considered bad enough to go on it. They were keen to combine the MTX with the enbrel but i refused because i felt so awful on MTX and enbrel by itself works for me. However i have done masses of reading up on diet and i dont eat red meat and very little dairy and i juice green veg etc to help and it works for me. If you alkaline your body as much as possible there is less inflamation it seems. Good luck

[Custard in reply to annie64]

Hey Annie,

Thanks for responding, I havent eaten red or white meat in years, eat mainly veggies & juice regularly, take excercise etc so was floored ( and felt cheated) when I recieved my RA diagnosis. I'll continue to eat healthy and I agree with the fact that the more alkaline your body the less inflammation. As bad as I feel some days I appreciate it could be much worse.

[lulul]

My consultant says she can't offer anti tnf till I have failed on MTX/sulphasalazine etc. Injections now for increased effectiveness then next step will be anti tnf. Rheumys are bound by guidelines. Give the dmards a whack first..they may be ok for you. Good luck x

[Custard in reply to lulul]

Thanks Lulul,

Waiting for the appointment is what is stressing me out.. I have too much time on my hands so am worrying and sending questions emails out to people & random professors asking for advice!

sigh

[Gina_K]

I have read studies also that early intervention is the key to getting RA under control, how they judge that is you bloodwork each month. Initially I was given plaquinil, pain continued, 6 weeks later methotrexate still pain swelling a delay of 4 - 6 months for approval for anti tnf and I chose Humira. That was 2 years ago. I am currently doing very well. In the U.K. the cost seems to govern your treatment, having active disease and Rheumatoid factor got me the anti tnf relatively quickly. I also was on steroids for some time until meds took effect. Good Luck, the whole thing is very upsetting and confusing when you are newly diagnosed. Make friends with Rheumatoid Warrior if you are on Facebook, she has lots of interesting stuff on her page.

[Custard in reply to Gina_K]

Hi Gina,

Thanks for the advice I will check out warriors facebook page. We may have read up on the same studies, I wrote to Professor Emery in Leeds who although sympathetic reiterated the general NICE guidelines. He did ask if I wished to be included in any future trials which is nice, as his work seems to be causing a positive stir in RA research and treatment.

At my last appointment my GP prescribed steriods to help me get by for the 4wks until my hospital appointment. As the RA is affecting my jaw amongst other joints eating without the steriods was a real struggle (soup and juice only)

xx

[Hidden]

The current NICE guidelines for treatment by anti-tnf such as Enbrel require you to have failed on at least two DMARDS such as methotrexate, sulphasalazine, etc. Although all RA drugs are toxic, to some extent, anti tnf will not be considered as first line therapy nor would it be appropriate to do so. Its akin to giving someone morphine for a headache when actually paracetamol would have worked and would be the drug of choice! Anti-tnfs are used for moderate to severe, usually established RA.

Just wondering, if you haven't seen a specialist yet, who has diagnosed you? Only rheumatologists have access to the tests needed to make a firm diagnosis. Some GPs will do the Rheumatoid Factor test but this cannot be used for diagnostic purposes as it is highly unreliable!

Good luck, let us know how you get on

Lyn x

[Hidden in reply to Hidden]

Just to add, having slept on it ... Methotrexate and similar drugs at maximum dose are aggressive therapies! Anti-tnf are no more so they simply act in a different way

Hope my thoughts help you.

[Custard in reply to Hidden]

Hi Lyn,

My GP's (the whole surgery had a conflab about my symptoms) have been brilliant. There was a bit of confusion early on due to my sypmtoms being 'pain & I feel like im walking through a world made of tar'

All tests came back normal except for two, my RF factor is 149 and I have anemia. So they requested an anti CCP test to illiminate RA from the pool of conditions I could have had - but as that has come back at 600+ they are pretty confident I have RA and referred me to St Guy's.

I've done a whole load of reading, researching and lurking on several RA blogs. Im aware of the NICE regs I was just wondering whether someone could 'bypass them!!'

[Hidden in reply to Custard]

The only way to currently bypass the guidelines is to go through a trial as in the COMET one that Professor Emery has been involved in, results published in February 2010. The only snag is, as with most drug trials, you can't be certain that you will drop lucky and get your drug of choice. Consequently following this unconventional method could actually cause you more problems than opting for regular standard treatment!

With an anti-ccp of 600+ I would have expected you to be pushed through urgently and started on methotrexate.

Do hope you are seen very soon. Keep us posted

Lyn x

[Custard in reply to Hidden]

Hey Lyn,

Yeah the GP's are flabbergasted that it took the hospital 4wks to get back to me and then give me an appointment date a further 4wks in the future they had put me on the fast track list or something.

I asked to be referred to other hospitals in the area, who have gotten back to me sooner than Guy's did (the following week!!) Unfortunately, the appointment dates are even later in June than the Guy's dates.... The next step is for me to see if any of the Consultants at the hospital see patients privately and research prices. If I take this route my GP has stated whatever Prescriptions I am given she would convert to NHS ones so they would be cheaper.

[Gina_K]

Lynn,

I know you are very knowledgeable about all things RA, but with the greatest of respect, current thinking is that early aggresive therapy within first three months of diagnosis, may provide the best outcome. Well, I have read some material on this maybe you know more. I think money dictates how most people are treated budgets etc? Might do a little blog on this... see what feed back is...

[Hidden in reply to Gina_K]

Hi Gina

Yes, I agree entirely with what you say but the aggressive therapy guidelines still don't include the use of anti-tnf therapy before DMARDS. It's also very difficult in the NHS to use the three month window of opportunity because it can take many months to get through the early stages of visiting a GP a couple of times and trying the anti-inflammatory route for your sore hands or whatever! Custard has been fortunate in getting an anti-ccp test done by her GP; this is not a test that is ordinarily available to GPs and would not be done normally until the first rheumatology appointment. There is work ongoing, with trialling in some areas, to come up with new procedures to meet the requirements of early diagnosis/treatment ... just been involved in some pilot studies on this. This will provide an overhaul of GP/Rheumatology services.

Many people diagnosed with RA don't need anti-tnf therapy, their treatment being well controlled with DMARDS. I posted the following on another question somewhere but will repeat here as it clarifies how treatments in the UK tend to work.

In England and Wales methotrexate is often used as the first line DMARD onto which others can be added if required. This is known as the "step up" method; additional drugs are given over a period of time to allow each to build up slowly in the system. If side effects occur it is usually clear which drug is causing the problem. In Scotland they seem to use the "step down" method whereby a triple therapy is given at the outset. This is aggressive but the problem with this is although in some cases it may be very effective there is also the risk of over prescribing very toxic medications. There is the added worry that if side effects do occur it may not be clear which drug is causing the problem and they all have to be stopped!

Certainly budgets do impact on treatment patterns but I think that will always be the case. Rheumatology is generally not regarded as high priority, sadly.

Over the years I have gained a lot of information but like everyone I'm still learning as new things are introduced and changes are made.

Sorry, have waffled on somewhat. Note to self ... must learn to condense!

Lyn x