Those on ANTI-TNF - How long from DMARDS to Anti-TNF??

Cez

Had an appointment with my consultant yesterday, i feel generally quite well, maybe one or two 'stiff/painful' days a wk on average and now not taking any painkillers. My doc is not happy because despite MTX 20mg weekly and hydroxy daily, my ESR (which was originally 120) refuses to go below 21 and recently shot back up to 60. This has resulted in another steroid jab (which i quite like ;-)) and the addition of sulfazalazine! She doesn't want me to accept having 'bad days' as normal and says why should i be happy with 'okay' when i could be 'really well'?!

I'm pleased she's so pro-active and determined to get me well and i'm willing to try anything to feel that way (although i'm not jumping for joy at the thought of taking more tablets!). However, she thinks that the DMARDS should ideally have my inflammation under control now and that if the Sulph doesn't help and i fail triple therapy, they'll start looking at 'biologics'. The anti-TNFS make me a bit nervous tbh and i'm hoping the DMARDS do the trick!

Anyway, after all that, my question is for those of you using anti-TNFS, how long did you try DMARDS for before your consultant switched you?? Were they more effective in your case??

Thanks for any answers!! x

Poppyg1rl

Hi Cez,
I was first diagnosed with PA March 2010 and put on Sulfasalazine, by August that year I was stiff and swollen in all finger, thumb, and toe joints so Rheumy put me on 20mg methotrexate and 400mg Celebrex. By December it was clear I was suffering with more and more joints affected and my inflammation markets were 80+ so I went down the anti TNF route with Humira. I reacted quite spectacularly to that, and after the 2nd injection I ended up in hospital on oxygen and steroid drip.
However, I've just started Enbrel and so far so good...no reaction yet I'm hopeful this will work for me.
There are a lot of things the Rgeumy has to do before you start, get funding for your anti tnf through your primary care trust, check your health, (they test rigorously for latent TB) and as I've shown, everyone is different with how they react to different drugs and treatments, you nay have to try a few combinations before you get the balance right.
Im thinking of you, it is a bit scary when you first look into it all, I had to weigh up my quality of life, I'd rather try something in the hope of getting better, than do nothing and continue getting worse.
All the best, love and hugs xxx

dreamdaisy

I had four years or so on a variety of DMARDs and NSAIDs before my first anti TNF was tried. My hospital now has a policy of no more than six months on meth etc then they try an anti TNF/biologic. I am certain that these work better the earlier they are tried. If you go down that route I hope they work for you. I wish you well. DD

jillyb1

Hi , Cez , I was tried on all sorts of potions for years before being put on Humira . Unfortunately , it hasn't done a huge amount for me after battling my RA for 30 years ; the damage was done ! Anti TNFs really need to be tried early on , which I hope they now do more frequently and then it seems to be very beneficial in most cases . Jillyb

kathbee

Hi Cez

12 yrs on DMARD'S
Then last year my first Anti-TNF - Humira
but it didnt like me.

I have just had my first infusion of Rituximab
another Anti-TNF drug, looking forward to seeing
how that goes.

Best Wishes
Kath

Ilovemystaffie

kathbee wrote:

Hi Cez

12 yrs on DMARD'S
Then last year my first Anti-TNF - Humira
but it didnt like me.

I have just had my first infusion of Rituximab
another Anti-TNF drug, looking forward to seeing
how that goes.

Best Wishes
Kath

Hello from a newbie!
I`ve been taking various Nsaids since 1980 to try and combat my ankylosing spondylitis.
Tried Dmards which didn`t work.
sulfasalazine started to affect my kidneys so had to stop, methotrexate severely affected my platelet count.
tried humira last year and it didn`t like me.
Started on infliximab infusions 4 weeks ago,had my second one last week,next one is due in 5 weeks time.
Some of my pain has reduced,as has the fluid on my knees.Hopefully my body will cope with this drug!!!

Whatever you take,I hope that it works.

salamander

hi, I had 6 months on mtx and got a nasty chest infection that wouldn't clear up, plus it wasn't helping at all, then I had hydroxycholoriquine for 6 weeks but had a reaction. So almost a year to the day of starting Mtx, I was put on Cimzia. Works well but I keep getting infections.

Ankyspond

Hi all,

I was an sulpasulazine for six months then methotrexate for six months, neither having any impact on my AS. Been on Anti TNF (Enbrel) since November, for me brilliant got lots of life back, sleeping at night and eased pain in hips, back hugely although still pain in my other joints. Have to consider if you are well enough NOT to try it, am sure if you being considered for it that is not the case. Rash at injection site for first couple months but so far nothing else (fingers crossed). I teach and was worried about my immune system and always being ill but only one chest infection back in winter.

You have to decide what's right for you, good luck to all AS sufferers whatever the medication you choose. X

skezier

Hi Cez,

Its kinda different between trusts sadly...

I went on sulfa and failed, went on mtx tablets and failed, now on 25ml jabs and well its not working but they tell me I wont get funding cus no one does now our trust is saving money.... well its bankrupt again so it can't even if it wanted to,..... and I don't think its too bothered about patient care but i am biast

Hope you can get it completely under control and fingers crossed for you. Nice to meet you by the way and welcome from me as well. Cris x

Hi Ilovemystaffie nice to meet you and welcome as well x

Ilovemystaffie

Thanks for the welcome.
Isn`t it good to be able to talk to people with the same problems in life!!

traluvie

Hi Staffie(i have 3 lol)

Unfortunately i am still learning and unable to help you with you question..
Just wanted to wish you well and hope you find the right one that suits you..

tkachev

About 9 years for me(including 1 year on nothing as undiagnosed) trying various potions, hydroxy, paracetemol, sulfasalazine, MTX before trying Humira which worked from day 1, injection 1.Unfortunately suffered some damaged joints during those years.

Elizabeth

Ilovemystaffie

Thanks traluvie.
Good to hear from a fellow staffie nut lol.

Thus far the latest anti tnf hasn`t given me any side effects ,although,over the past few weeks . I have noticed that I am feeling even more tired than usual and also feeling a bit down(maybe the coalitions attitude towards disabled people on the news etc has fuelled this!).

Cez

Thanks for all your replies, it's interesting seeing the difference between your treatment patterns and to also see i'm not the only one that's nervous about the anti-tnfs!

I must just keep in my mind that it's amazing when ever i feel 'normal' and i should be willing to give anything a shot to get that way!!

Thanks again x