Which Anti TNF drug should I chose?

[saskiasmum]

Hi All, I don't write on here often but find the site extremely useful. I live in Chester and have now come to the point where I have now been offered anti tnf drugs (hurrah) I'd like some help on how on earth I make the decision as to which one I chose. Any feedback would be most welcome. Thanks

[Hidden]

nras do a good publication on biologics aka anti tnfs

[Hidden]

When I was considered for ant-tnf I was given several leaflets for the ones that the hospital were thinking would be best suited for my condition to look at first before the next appointment. Have you been given any to consider by your hospital? At least this would narrow down your research.

[Hidden]

Hello, my consultant never gave me the choice and told me that Enbrel was in his opinion the best tolerated. I can't really help other than that! but I have been on enbrel for 18 months now and was told this week I have no signs of permanent damage and that we can safely assume I'm in medically induced remission, I hope and wish you get the same results from whichever anti-tnf you choose

[saskiasmum in reply to Hidden]

Wonderful news! I do hope I get the same result.

[cathie]

I wasnt given a choice when they put me on infliximab in 2002. There weren't that many then, but I'd be surprised if the choice was offered to me! I'd expect some guidance.

[saskiasmum]

Hi All, I've been offered Enbrel, Humira and Simponi. The only distinction I can see is that Enbrel you take weekly, Humira, monthly and Simponi every two months. From what I can read on the leaflets I was given this is the only difference. I'm thinking Humira, as it's middle ground and I've read a few encouraging reports on here. Any advice would be great thanks.

[k3let]

Hi, like others I was given enbrel first withimited results. Now on Humira but it has stopped working of late. Who knows what's next? Wasn't given choice just told by consultant. Hope you get a good result which ever one you go for. I love reading about medically induced remission and hope I will be lucky enough one day to get to that stage, hope you do too. Best of luck xx

[saskiasmum in reply to k3let]

Perhaps I should take the approach of going straight onto the most recent one? That would be Simponi. Its really difficult to find any comparisons etc. All information appears to be very non judgemental on all of these drugs as if they support no one drug company over another. All very confusing for the patient.

[Paula-C]

I was given a choice of three, humira, enbrel and inflixibab. Wasn't happy about the latter one, didn't want to be tied to keep having to go to hospital for infusions and worried about how much of the drug is given, I may of been able to tolerate 2 weeks worth, even 4 but what would happen when I was given 2 months in one go and I had a reaction to it?....alot of drug to get out of my system. So that left humira and enbrel. Humira is injected every two weeks and enbrel can either be twice a week or weekly. I opted for enbrel thinking that if I did have any reaction to it there wouldn't be much of the drug in me. I also found out that when going away on holiday enbrel can be kept out of the fridge for up to four weeks.

When I told my specialist nurse what I had decided she replied that it was the one that my consultant wanted me to go on..........wish I had been given this information earlier.

I also was told by the second nurse that came to watch me inject it that humria stops you making tnf's but with enbrel your body still makes it, but enbrel gets rid of it. I think it is better not to take something that stops your body producing something, if in a few years time there is a cure and you have been taking humria your body may not beable to start producing tnf's. (They found out that long term use of oral steroids can stop your body producing adrenaline and some people now have to take steroids all the time). I am going to check with consultant next time I see him if what she said is right, she may be wrong so don't take it as being right without checking first.

I have been on enbrel now for nine weeks and I haven't had any side effects at all, no rash, not even the sting that people talk about. I don't use the pen thing to inject, specialist nurse advised me that because I already inject MTX it would be better for me to use the syringe method because I would have more control over it.

I have been extremely lucky with enbrel, I had the ta da moment the next day, couldn't believe what a difference it made. I have been weaning myself of steroids since. For the past two weeks I have been taking 5mg steroids one day and none the next day, tomorrow is the last day I take steroids. On my non steroid days I have perfectly OK, no pain no stiffness at all. So if all goes to plan I will beable to manage without strong pain relief for the first time since being diagnosed with RA (May 08). At the moment I can honestly say that enbrel has given me my life back and touch wood it will continue to do it's magic.

Hope all of this helps.

Paula

[Victoria-NRAS Partner Moderator NRAS]

Hi

This is a question that crops up quite often. These days a decision such as this should be a shared decision between you as the patient and the healthcare professionals, so it shouldn't be left entirely up to the patient to decide (though sadly it sometimes is), and it is worth speaking to your rheumatology team about this again to see what their thoughts are. We do have a booklet on the biologics, which includes information on anti TNF drugs, as Summer has said but there's probably a bit more detail in our article on anti-TNF drugs:

nras.org.uk/about_rheumatoi...

You will probably have noticed in any reading that you have done that these drugs are all quite similar in terms of side effects etc. as they are all working in a similar way, in targetting the same part of the immune system (the TNF cells). This makes them very hard to choose between, but I think the important thing to take into account is that this means there are no 'wrong' decisions here. Neither you nor your healthcare team can know in advance which of these drugs will work best for you, so you can use any criteria to make your decision. Some people decide based on how regularly the drug is taken and how this fits with their lifestyle. Some might ask their rheumatology team if they have a preference or more experience with one drug than another. Some people might also make a decision based on how long the drug has been around.

I wish you luck with this decision, but you shouldn't feel pressured to have to make the decision entirely on your own, so it is worth speaking to the rheumatology team and getting their help as well.

I hope this helps

Victoria

(NRAS Helpline)

[_andy_]

i used a very technical solution ..... called .... Eeny, meeny, miny, moe ... it came out enbrel ... ive taken this for 3 weeks now . its a miracle drug .. it started working the following day ...

i know this can be so hard to pick i went through the same .. no matter how much you think or research or even ask medical experts .. there is still no answer .. its still down to yourself .. i found the more you looked into it , the worse it gets ,just trying to pick one ..

i also did a blog on this called,, decision decision decision ?? if you want to take a look , there is some good replys to the blog ,, may be helpful ..

victoria is bang on right . because there are no 'wrong' decisions here... so dont worry about it to much ,, my knowledge is .. if one doesnt work for you ,, you just try another .. hopefully all 3 would work for you .. so piicking one ,, doesnt matter ..

good luck ..

[saskiasmum]

Thanks for everyone's advice. I spoke with my rheumy and made the bold decision to go on Simponi. The main advantage was that I only need inject once a month. I also considered that as it's the newer drug there was possibly a great deal of research had gone into it coupled with possibly key learning from the likes of Enbrel and Humira. Fingers crossed