Anti TNF medication

[dmc12]

Hi All,

I have had RA for over 25 years and I am on my fourth biologic treatment having failed on Enbrel, Infliximab, Tocizalamab and another which I have forgotten the name of. I am waiting to hear from my RA specialist as to what my options are but does anyone know of any other anti TNF's as I would like to do some research before starting on another drug?

[helixhelix]

A very good starting point is the NRAS guide to biologics which tells you about the different types (anti TNF, IL-6 etc&) and also goes through the different drugs in each group.

here's the link

nras.org.uk/includes/docume...

[dmc12 in reply to helixhelix]

thank you I will check it out.

[claireyj]

Hi really hope they find somthing that will help you . I'm on the biologic Cimzia and it's been amazing , it's been 6 months now and I don't want to speak to soon as you never know when things start to go wrong but so far so good. Good luck Claire

[dmc12 in reply to claireyj]

Thank you I will have a read up on it, glad it is working for you.

[farm123]

This sounds very familiar as I have had sero negative inflammatory arthritis for 27 years and failed 4 biologics - Enbrel, Humira, Rituximab and Tocilizumab and believe failing the 5th. Currently on Abatacept but 4+ months in and not enough improvement, have had a steroid IM and both knees drained and steroid injected last month but still have problems with shoulders and hands. I am not able to tolerate Methlytrexate which does appear to limit options. Interesting to hear what your consultant will suggest next. farm

[dmc12 in reply to farm123]

Hi farm ,

I too am zero negative and have had to have both knees replaced in the last two years and my lungs are getting worse so I need to get it under control. I hope you get some good news soon.I will post when I have seen my specialist re new treatment. Thank you

[farm123 in reply to dmc12]

They have talked about replacing my knees as they have so far been the worst affected with inflammation but not sure they are actually overly damaged yet. The thinking being that with less inflammation there the other joints would be easier to control but I am very sceptical. farm

[hstubbings]

my question to you is how long were you on each of the biologics. I know it can take well over 6 months to see any kind of relief. What other medications are you on too - are you on Methotrexate too? Just asking as I have had RA for well over 25 years and have been on Humira since 2008 - was taking Methotrexate until the fall of 2012 when I asked to be switched as I was fed up with the nausea. I'm on Arava too. Been doing really good but unfortunately I also have Osteoarthritis too - going in for hip replacement in May.

[dmc12 in reply to hstubbings]

Hi,

I have been on each of the anti TNF's for over a year before my specialist took me off them as bloods and joints not showing any improvement and repeated infections for which I am now on permanent antibiotics. I did try methotrexate but it did nothing for me and again I was taken off it, i think I had some side affects from it too. I have been on steroids for over 20 years daily, anti inflamatories, muscle relaxants, nerve pain blockers and although these help they are not slowing the disease down and I need to get it under control as it is affecting my lungs more now also. Good that you are responding well, are you positive for rheumatoid factor? I have been told as I am zero negative it makes response to treatments more difficult?

Donna

[farm123 in reply to hstubbings]

My experience of treatment / biologics is :

Myocrysin (gold - DMARD) 7 years, Etancept 8 years, Humira 9 months, Rituximab 1 cycle (made no difference), Tociluzumab 3 infusions but over 4 months as affected neutrophils. Abatacept for nearly 5 months.

Methletrexate, Sulphalazine, Leuflunamide, Azothrioprine have all caused blood / side effect problems so cannot take.

Being sero negative and not being able to add a DMARD in does seem to limit choice and effectiveness of Anti-TNF treatment.

Have only had one course of oral steroids and that was last year which has been my worst yet but plenty of joint injected steroids which generally give me relief and some IM steroid which are hit and miss whether they work.

[Jeanabelle60]

can't take methatraxate, too sore on my liver. have been on all the bio's mentioned above....had to come off them for various reasons. now on abatacept and it is a miracle drug for me. i am also sero negative.

[petalnumber2]

I am also Sero negative, and I had no idea that it can be harder to treat than sero positive.

It seems to me that most of us have to go through different medications to find one that suits best. By that I mean the list of Dmards and Anti-tnf treatments. I have been taking Methotrexate for three years and I have been generally fine on it, apart from the odd tummy upset. But it did nothing to bring my ESR levels down. I have tried several Dmards to take alongside MTX, but had bad reactions to each one.

So, I've been on Enbrel injections for the past 10 months, no bad reactions to report, but It certainly isn't working as well as I would hope, because I had a major flair last September and had a Kenalog (steroid) injection to get it under control. Now I'm mid flare again, but the clinical nurse told me that Enbrel will not stop a flare !!

Well perhaps Enbrel isn't working for me and I need to try another type of Anti-tnf treatment. I certainly haven't been through the long list of options like some of you here. But I do feel disappointed and disillusioned about the drug therapy for RA, particularly as I'm steadily losing my ability to walk because of damage to ankles, tendons and knees and really painful shoulders.

Please forgive my moans, because I am aware that so many of you are suffering much worse than me and have had several joints operated on and have other internal problems too. But, I can't help thinking that there isn't an awful lot of improvement in the treatment of RA !! June xx