To Anti TNF or not??

[lulul]

Have seen the rheumys today and they want to start Anti Tnf treatment providing I am approved. I have a choice of Enbrel Humeria and Cimzia..which one do I chose if any?? All sounds a bit scary to me.

[Hidden]

Hi Lulu

I think the simple answer is if the rheumatology team believe you need the drug then you go ahead! Yes, it is scary as these are powerful drugs but it's equally as scary if you don't take the treatment and end up with long term joint damage!

As to which you choose is, I suppose, personal preference, each of these are injectables. I'm on Enbrel and have been for 7 years. It has a short half life which means if you need to come off the drug for any reason it leaves your system quickly, within 3-4 weeks! Cimzia is still relatively new in this country so there's less experience of its long term effects (although it has been thoroughly trialled and approved!). A lot of people do well on Humira.

If you haven't got the 'Biologics' from NRAS it is well worth giving them a call and requesting a copy. It's full of information which should help you come to a decision.

Good luck with your choice,

Lyn x

[cathie]

Why ever not: I'd choose yes! I've been on one of the early anti-TNF, infliximab, for about ten years now. It has given me back my life, after aggressive RA was closing doors. Although people say, correctly that they are powerful drugs, I dont get that feeling when I take mine, it was introduced very gradually, under close supervision. I found benefits almost immediately, I havent got all my mobility back, but as long as I take my supporting drugs (methotrexate + folic acid) and avoid stress, I'm not too bad. I havent had the horrible joint erosion that you used to get, and I've been able to travel, walk a reasonable distance and do things for myself and family.

So I'm a good advertisement for the treatment and consider myself really privileged to have had it through the NHS.

Good luck with your decision.

[Hidden]

Hi Lulu, go for it, I know some people on here would love to be offered the chance. I myself have tried Infliximab,Humira and Enbrel. The only one that didn't suit me was infliximab, Humira and Enbrel both worked well too but unfortunately for me they stopped working after about 2 years.Most people I have spoken to do extremely well on Anti-tnfs, like Lyn said Cimzia is the newest of the three you mentioned but there are still a few people on here taking it.

The book available from the NRAS gives a good insight to the Biologics available and will answer most of the questions you have as it is a very difficult decision to make choosing the right one. Or talk through the choices with your rheumy nurse or consultant.

Good luck with your decision

Mandy xx

[Gina_K]

Hi Lulu, that is great news being offered anti tnf, I am on Humira injections 2 years, MTX & plaquinil. I find the Humira very easy to use with bi weekly injections and as far as I know have had no adverse effects and my bloods are all within the normal range so I have to recommend Humira. I feel I have a normal life with a little more pacing and awareness, There is no cure for RA, but slowing down or stopping the progress is clearly the objective and there is a very good chance if the Humira works you can be well,

Bon Chance,

Gina.

[ke11y]

Hi Lulu

I took advice from my consultant as to which one I try, he recommended I try CIMZIA as I am 23 and my consultant had recently seen someone of a similar age respond well to it, which I have now been on since Feb 2011 and i am doing really well on it, I saw a difference after about 8 weeks.

Good Luck

Kelly

[Hidden]

I've got the go ahead for Enbrel, counting the days!!

I go through scary thoughts also but the thought of feeling better and Gina's remission status and I can't wait!

I know it may be wrong to bury my head in the sand but I try not to read the side effects now, when the nurse went through them today I started thinking about what was for tea tonight and hummed a quiet tune in my head!

How would you feel if you never got approved and the decision was then out of your hands? relieved or peeved?

Good luck x

[Gina_K in reply to Hidden]

Wiliby,

don't forget that is my blood rsults, I am doing well but still achy and tired by times - but v good compared to ther times :0

[Hidden in reply to Gina_K]

just realised my reply sounds like it's all your fault!! sorry, no, read lots of other positive results really, trying to convince myself everythings going to be okay

[Gina_K]

Thats great, hopefully will move along with treatment as Gold obviously not the one for you, can't wait to hear all about your consultation.

xxx

[Hidden]

all meds have side effects.. read the positive comments on here and try to make an informed choice that you are happy ! with the medication choice should be yours as the patient. I would love to have more choices/ opportunities.. I agree that all the drugs are scary, but you should go with the people who have tried them experiences and let these help you decide. wishing you well what ever you decide

alison

[ann57]

Hi I am on cimzia and it has helped me a great deal, I was on enbrel but then had to be put on cimzia and this seems to help me alot better I was the same when I was offered them, but the difference they make to the pain and inflammation is great, you will be given a number to ring directly to the specialist nurse if you need help about anything they will be able to support you and answer your questions and they do check everything before you start them, I hope this helps.

[lulul in reply to ann57]

Thank you...can I ask if you have good support at your hospital? I am glad you are getting on well on Cimzia. Is that the newest one available?

[Tiasteph]

Hi Lulul

I have been on them 5 yrs, inflixmab, enbrel & finally humira, which thankfully is still working. The 1st two didn't work for long.

I have had RA for 13 yrs & this is the best I have felt so I would say go for it! For me its quality of life wins over side effects. That said I'm by no means back to before RA, but I would say as good as I can be.

I take humira without MTX, my choice. I also try to help my body with a super clean organic diet. As I feel my body is coping with enough so I support it the best I can.

Hope this helps...

Good luck

[cherry2]

Hi,

Ive been on Cimzia for 4 months now and since I was diagnosed april 10, i'm the best I've been, a lot less pain, a lot less stiffness, a lot less swelling and my CRP is down to normal for the 1st time. I agree that it is scary, but at that time, life wasn't worth living as I was in so much pain and so very very tired so didn't really have any choice ,glad I started on it !Go for it, good luck, let us know which you choose, x

[lulul]

Thanks for the responses everyone. Another problem I have is they need to know my medical history before going ahead with regard to Parkinsons, MS, stroke and TB in the family. What happens if you don't know this information..do you get refused ? Is it risky to proceed without that info??

[abednegomonkey]

I'm on humira and it is working well so far (5 months now).

Regarding the history, you can only tell them what you know - if you don't know just say so.

THey have to check you are clear of TB before starting because one of the side effects is TB! I think this must be very rare. THey had a big debate about me because my mum had it before I was born; so had to double check - but I was considered at no extra risk than any one else.

Things like Parkinsons, MS are asked about because another side effect is peripheral neuropathy (nerve pain) - so if there is someone in the family - you might be considered more at risk. I already have severe nerve pain from a previous auto immune disorder, so a letter went to my neurologist - but it was decided I was at no more risk than anyone else - and in fact the pain hasn't got any worse!!

So I would say, if you don't have the information, don't worry - it is all precautions bearing in mind the known side effects. Interestingly enough I've had loads of side effects on the DMARDS (so had to stop them) - but only one on Humira - and that is that it has changed my fair follicles on my head (according to my hairdresser..). and I have now gone a bit curly!!! I haven't had a single headache or anything else.

So I am really pleased with Humira and despite my history so far I've had no problems at all.

So I hope the screening goes well for you. Hope this helps.

[Sheila_G]

Hi Lulu

I think you need to talk in depth with your rheumatologist about side effects etc. You didn't say what you are on already but I presume it is at least mxt. Remember that this is also a powerful drug so your body is quite conditioned. It won't be like starting anti tnf from scratch and I know you want someone to tell you which one to take but frankly it is a case of try it and see. You might read on here that someone has had a terrible time on a particular drug but that doesn't mean you will. We all react differently to drugs. Good luck with whatever you choose.

[lulul]

Thanks the rheumy talked constantly about the negative side of anti tnf..didn't really sell it for me!! I am only taking MTX now though and I seem to need something else so will have to consider it.

[Hidden]

they didnt sell I suspect says cynical me because of its cost??!.

You chose what you think isbest for you If you have several options??, there are some very encouraging comments on this question and answer section study all the facts and also NRAS does a great booklet on Biologics

[lulul in reply to Hidden]

thanks summer