Anti TNF therapy

[lulul]

What are your opinions on anti tnf therapy and after 8 months since diagnosis ,is it too soon to accept this treatment?

[Hidden]

I dont think so, if your consultant is offering it then they obviously think you need it.

I would have taken if offered at an earlier date, I am about 11 weeks in on Enbrel and I'm really hoping for good results.

Julie x

[lulul in reply to Hidden]

I am nervous about the possible side effects..neurological disorders especially on Enbrel...low risk I know but just wonder if I should stick with the mtx?

[Hidden]

Hi Lulu. I started on Infliximab but had a reaction to it so it was stopped, I then went onto Humira that worked for about 2 years then stopped working for me. I then went onto Enbrel which also stopped working after about 2 years. Am now on Rituximab and am due to have my fourth cycle soon, this as been working well too so fingers crossed.

Like Julie said if your consultant is thinking about it for you then you obviously need it no reason why you shouldn't have it as it works so well for many people. It certainly seems to work well, so if I was you I'd go for it. I know you say it's only been eight months but if other DMARDS are failing then you need to get control of the RA before it does any damage.

Good luck Lulu.

Mandy xx

[lulul in reply to Hidden]

Scans show damage to feet and hands already so I need to consider that. Not sure if that happened before diagnosis though or since.

[Hidden]

I was told that the risks of uncontrolled inflammation are as bad if not worst that the negative effects of AntTNF. MY gP explained it like this- if you imagine your joints as a bloc of ice then the inflammation is slowley melting them. Thats just about it. But the melting is permenant . Thats without the effects of uncontrolled inflammation on your heart. risk of strokes and cancer all of which are related to uncontrolled RA.

My bloods, DAS score and antibodies led to daignosis of severe RA. If you are satisfied that you have severe aggressive RA then now is the time to strongly consider take Ant TNF. Of course you should also benefit from a release from the horrendous pain and fatigue from our condition if the treatment works for you.

I believe Ailsa founder of NRAS has been on Anti TNF for over 10 yrs and has said she could not manage without them.

All the best in coming to terms with whatever road you take it took me a while to get my head round my options.

Fiona

[Andrea_Shapiro]

Although anti-THF drugs were not the miracle that I believed that it would be, I would not be without it, as the quality of my life would be zilch. It's a little painful inconvenience in my life every week, but I couldn't envisage going back to what I had to endure on a day-to-day basis. I've been on Enbrel now for a year: it's not the perfect solution, but it certainly tops hands so swollen that I couldn't do a single thing.

[annie64]

I would go for it! I went on enbrel after about 15 months of pain and feeling awful and it has been fantastic for me and the only side effect i have is a bit chesty sometimes which i limit through not eating dairy products. I also cut out red meat. It was such a relief to find something that worked and i would say that although you still have to pace yourself i can do nearly what i did before the wretched RA came. I really hope it works for you too.

[LavendarLady]

Hi Lulu. For some reason my earlier answer has not registered! I was put on anti TNF after 5 months as my RA was particularly aggressive and nothing else worked. I was in a wheelchair as could not walk, stand or do anything for myself. My consultant said he had never seen anyone as bad as me when I first saw him. A combination of steroids and MTX brought it down after several bouts in hospital. I was on Humira first and then switched to Enbrel as the Humira began to lose its effect and I came out in a rash. Without the anti tnf I couild not function. I still use a wheelchair at airports as cannot stand for long and can't walk the distance involved. At least it gets me through security as a priority! So go for it. But don't expect immediate miracles as it takes about 12 weeks to have an effect. Like the others, I would rather be on that than go back to what I was before. Good Luck. LavendarLady

[Hidden]

take it with both hands xx

[Hidden]

Hi Lulu I agree if they offer go with it. Expensive drugs which have been life savers for many including me. I also understand that there is some new evidence emerging from clinical trials that the sooner they get people onto Anti-TNFs the better it is (ie rather than making us go through various loops and getting worse before we qualify for them). Certainly a friend of ours we offered one on a clinical trial when newly diagnosed and it appears to have stopped the disease in its tracks (so far). As someone else has said there are so many other additional things which affect you with RA that getting the basic inflammation under control seems vital

All the best Skippy

[cherry2]

Hi, I was started on Cimzia about 10 months after diagnosis as 3 DMARDS failed to improve my symptoms. I ve been on it for 4 months now and whereas i'm no way near the active person i used to be i'm the best i've been during my 15 months with RA. Side effects look scary but if you had cancer and were offered chemo those side effects would look scary too but most would choose to have it. I felt that i didn't have any choice as quality of life before Cimzia was pretty poor. Good luck !