Do antiTNFs work without backup?: I'm currently on... - NRAS

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Do antiTNFs work without backup?

wishbone profile image
14 Replies

I'm currently on methotrexate, lefluomide and hydroxy and will be starting on enbrel in a few weeks time. My understanding is that I will have to carry on taking at least one of the above DMARDs - don't know for sure but think lefluomide will be stopped once I start enbrel. I appreciate that I'll need to carry on with some of my current meds as it could take some time for enbrel to get going, hopefully it will do a good job of controlling my RA. If it does, will rheumy then try decreasing my DMARDs with the aim of eventually stopping them altogether?

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wishbone
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14 Replies

I thought that anti TNFs were trialed like this; MTX alone and MTX with anti .tnf I know this is true of Humira and Cimzia, at least.

My rheum nurse also said that MTX stops you building antibodies to the anti TNFs too. She may have only been talking about the above mentioned two though.

If you go on Enbrel's site, it may give you some more info on the stats and how the measure 'success' etc.

Metal-legs profile image
Metal-legs

It depends on how well you respond to Enbrel. I took Enbrel for a few years with no other DMARDS as my CRP was only 3. Then I needed to add other DMARDS., as my CRP started to climb. This is something you will need to discuss with your rheumy, you may be able to reduce your other DMARDS once the Enbrel is well into your system. I wish you the very best of luck with Enbrel, it did take over 12 weeks for it to reach its maximum effect with me so don't give up if you don't see progress at first.

wishbone profile image
wishbone

Thanks all.

I hope they will stop hydroxy along with lefluomide...I just hate having to take these meds! Things weren't too bad until 18 months ago when a blinkin' chronic bladder condition with accompanying UTIs put a spoke in the wheel...was just taking mtx for the previous 9 years, which did a decent job of controlling my RA without any side effects of note. Wouldn't say I was pain free by any means, but if enbrel can get me back to to that sort of level then I'll be more than happy.

Will have a chat with rheumy nurse when she phones. I might pluck up the courage to have a look at the enbrel website later, not sure that's a good idea for someone like me though - I'll probably end up a nervous wreck after reading all the risks involved. :) When I was diagnosed with RA 10 years ago, I was put on mtx with no questions asked by me. I remember having a quick look at the leaflet's side effects and thinking - jeepers!... if I take much notice of that little lot I'm going to go potty, so just got on with it. Sort of wish I had the same attitude now, then again, maybe not! :)

francherry profile image
francherry

Hello, I can only speak about my own experience as I am just on Enbrel injections (twice-weekly) as I did not tolerate 3 DMARDs and 1 other biologic. It is all very individual how we respond though. I have sero-negative RD so I cannot talk about what it's like for sero-positive RD. To answer your question about controlling the disease, Enbrel alone has stabilised my bone erosions and cut down the inflammation (particularly in my hands) - measured through an ultrasound - but I am awaiting results on a pelvic MRI so don't know the full story yet. I am better than pre-Enbrel but still a way to go. Definitely have a chat with your rheumy nurse about it and good luck with starting Enbrel.

Tessthomy profile image
Tessthomy

Hi Wishbone. I am now on Embrel alone. My understanding is (from my consultant) that seropositive RA (me) responds better than seronegative to anti TNFs on their own for some reason. I was on MTX as well but after a few years of trying it (oral and injections) he said i could come off it as i suffered with bad tummys etc. he told me that Embrel will work fine on its own..for now. He has also told me that in a few months he will re-introduce Sulfasalazine which i took in the early days (but it stopped working) as, re-introducing this now will boost the Embrel's effect. Hope this helps..good luck.. TT x

wishbone profile image
wishbone

Sero-positive/negative??... I had to google to find out what that meant. I'm sero-positive, suppose that's something to be thankful for if Tessthomy's consultant is correct. If enbrel does not work on it's own perhaps I can get away with just hydroxy as back up. Time will tell no doubt....

Thanks for replying and good luck to you both.

in reply towishbone

Some people are calling their RA, RD as it reflects the disease more than arthritis.

wishbone profile image
wishbone in reply to

I know about the RA, RD thing. I did a google to find out what sero-positive/negative meant. I've deleted the RD from my post for clarity, sorry about that.

I am injecting 50mg Enbrel weekly alongside Leflunomide, I have been taking this two since Dec 2012. There has been talk of removing the Leflunomide, but this has been put back for the time being. Eventually it appears they may just leave me on Enbrel alone, once I am completely without any stiffness and crunches. Although I have been told when this does happen I can go back to having Dmards in the mix if required. Hope this answers your query.

wishbone profile image
wishbone in reply to

Pretty positive post there. Thanks Georje.

I have been on biologics now for over a year without DMARDS and it is working well for me

wishbone profile image
wishbone in reply to

Good to hear the biologics are working well or you Sal, you must be well pleased with that.

IainM profile image
IainM

Hi Wishbone I started Enbrel 3 weeks ago and I am to remain on Mtx inj and sulphasalazine and Hydroxychloriquine untill they know it is working properly, after 12 weeks they said they will reduce my Sulp and Hydroxy until I am off them but not the MTX as the Enbril and Mtx work very well with each other, hope you get it under control soon

wishbone profile image
wishbone in reply toIainM

Thanks Iain, hope enbrel works or you.

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