Dear Deborah
I have not had personal experience of anti TNFs myself but do know someone who had tried lots of other dmards which had failed. She was beginning to despair and was very ill. Anti TNFs were the answer to her prayers and she has done very well since starting them. I hope this helps. I do understand your fears as I was prescribed a new dmard today and feel quite apprehensive too. Good luck. Let us know what you decide and how you get on. Best wishes from Naomi.

Hi Deborah

So sorry you are facing this dilemma.

I think it's very important to bear the following in mind. There is certainly a risk of anyone on anti-tnf developing cancer in the future BUT it is only a risk and not a certainty. However, if you refuse the drugs, it is more or less a certainty that you will end up with uncontrolled RA, damaged and misshapen joints and possibly, in the worst case scenario, being stuck in a wheelchair.

I don't want to scare you, but RA is so destructive as I know to my cost.

Lots of love
Jeanxxx

Hi Deborah

I am not in the same position as you but hope you will consider my experience of RA drugs as worthwhile. Over the last 23+years I have had just about every DMARD going, singly and in a variety of combinations. I have been on various doses of steroids throughout, had gold injections, two anti-tnfs and I'm now on Rituximab, a B-cell depletion therapy. I have had joint surgery and replacement and sustained considerable joint damage due to uncontrolled RA. The reason I am telling you this is to highlight the importance of these medications.

You would not be considered for anti-tnf treatment if it was not felt appropriate at this point. There is, as you probably know, no cure for RA BUT it can be very well controlled with today's sophisticated drugs. There is always an element of risk with new treatments but you have to weigh that up against the possibility of long term damage which could leave you severely disabled.

You should perhaps voice your concerns regarding the cancer risk with your consultant who can then choose the most suitable treatment for you. Certainly learning as much as you can about the drugs will go a long way to allaying some of your worries. The Biologics booklet that Sue mentions is patrticularly good and worth requesting from NRAS. In the meantime there is much information on the NRAS website about the Biologic Drugs. When reading the information you have to understand that all the grim details have to be included; this does not mean the bad side effects are necessarily common but have to be brought to the attention of the reader for legal purposes. The first line of anti-tnfs, Humira, Enbrel and Infliximab now have quite a long history of very successful use and many people have done well on these, as did I for several years!

I hope you are able to reconcile your concerns with the need to receive appropriate treatment for what can be a very destructive disease if left uncontrolled. Do let us know how you go on,

Lyn x

I can certainly identify with your concerns. I was also concerned when anti-tnfs where mentioned... especially when I read the side effects! However, I decided to go ahead and have been on Humira since last Feb.... It has totally changed my life and although my joints are still week, they are not swollen or inflamed any more. (I'm 50 now)

Both my parents died of cancer (one kidney cancer and one bone marrow cancer), so I was concerned about the risk. I looked at lots of research myself on the subject and found that just having RA can increase the risk of cancer, and having the anti-tnf's didn't seem to increase this further, as far as I could see. I also had an issue during the screening that my mum had TB before I was born; but it was decided that this wasn't really relevant for me.. so I could go ahead.

I did spend ages agonising over it... but I'd got to the point where nothing else was working, and my quality of life had gone down to next to zero... so I felt I had nothing to lose. I did know about Jenni's problems with anti-tnfs too - but thought I might as well give it a go. I was very cautious about the first dose; but amazingly enough, I have had no side effects (apart from my hair going curly! - and my skin going a bit dry) - I am now doing hydrotherapy to try and build up my strength again. But I do have an additional problem with my peripheral nerves (having had guillain barre - a few years back - before being diagnosed with RA) - which make moving my actual limbs painful... but the joints are brilliant! Even my dodgy knee seems to be settling down at last.

It's a good thing to gather all the info you can, talk to lots of people. The rheum nurses are good for info to. It sounds like your consultant is recommending them, but I do think it is normal for us to need time to weigh it up for ourselves. I can only say for me, it was the best decision I've made. Keep asking any questions you want to on here... as this is the place where you can get honest answers from people who have actually used the anti-tnf's.

Try and relax over Christmas for a few days.

Anne xxx