Im going on Anti TNF.....Whats your verdict???

Hi All

I have been having a major flare for 2weeks now. I saw my rheumy nurse today, also got scanned...very much inflammed tendons, so they decided after 6months of all my other meds its time for TNF. They gave me all the leaflets to read to decide on which one? I think its just a stab in the dark isnt it!!!! One might just suit me, one might not. Would like to hear others experience to all helps.

Hope you are all feeling well....alot of us seem to be having flares.....do we think its the cold weather setting in that contributes to feeling rough.

Lisa x

12 Replies

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  • Hi Lisa,

    sorry to hear that you have to start TNF.

    I will be starting Cimzia soon, and I will admit that I am scared, but I spent an hour and a half with my RA nurse, and she talked about everything. It will effect my work (I am afirst aider in a school) but I hope to be able to chat about it and be ok.

    I was advised to have Cimzia as I have several allergies, so maybe list some questions or concerns (I did) and get the info you need before making a decision.

    Hope this helps, and keep us posted!

    Pen

  • Hi Lisa

    I am on Etanercept 50mg once a week, have been since they first started it, and believe me the possible list of side effects then make the ones now look like a walk in the park - they are constantly realising that what they thought might happen doesn't seem to, the more data they collect the better it sounds ;-) I would say it made me 60-70% better and for me that was enough, enough to have a life which i was seriously lacking before ;-) It is really down to personal choice but i like not having to take Methotrexate too (which some of the others need), and being able to self inject at home gives me freedom.

    Being given Anti tnf used to be a last resort due to the cost/funding of the drug, but now they have realised that the sooner after diagnosis you take it the better the outcome and in the long run more cost effective for them.

    Hope this helps? Which ever one you try, it can only be a good thing ;-)

    Ella x

  • Hi Lisa, Like others I'm sorry your having a major flare, auto-immune conditions suck.

    I'm not on Anti-TNF (can't take it due to other medical problems) but I've heard many people talk of the benefits and feel it's the best thing since sliced bread. Sadly everyone's different and some people can't take it as they find the side effects to harsh.

    Luckily for us there are a number of different ones on the market these days and new research coming out almost every week, so if the first one doesn't suit your body it doesn't mean another won't be great for you.

    So keep an open mind and hopefully the first one tried is the best one for you.

    Good luck. xx

  • I've been on enbrel (etanecept) for 3 years and it has improved my disease by about 75%. The biggest drawback is the immune system dropping which means you can get very poorly from just a sniffle and having two young children that can be a problem as I pick up nearly everything they get. I'm also doing a degree and students are such dirty pigs so I have to be really careful about picking up bugs from lectures/uni - good hygiene is a must. Etanecept has made a major improvement to what was truly crap life. Its not perfect and I still have a flare (about once a month) which is a big improvement. I'm glad that I overcame my fear of injections (that's truly something to be proud of) and it means less hospital visits, being able to come off high dosage steroids and having some quality of life back. Now there are several types of anti TNF on the market and the NICE guidelines have altered I hope you find one that works.

  • love your comment about students! made me giggle--its so true! im a mature student and they all pass around freshers flu like its the plague!

  • I've been on infliximab for about ten years. So far so very good (do I sound like Catherine Tate?- sorry) I had no hesitation at the time, and its all worked OK for me. I have an infusion every 8 weeks. Sometimes, if I had an infection, they put it off for a week or so, but so far I haven't noticed that I'm more susceptible to infections than my nearest and dearest who are all younger and fitter than me. In fact I have got over colds and coughs faster than my husband for instance. I try a bit to keep away from infections, but my daughter and grandson don't really do much to shield me... The day care team are very careful to test bloods, urine etc so that I'm well observed I think.

    For the first five or six years I was working more or less full time but in a fairly pressured but flexible job. Meds kept me going OK, I was conscious of limitations and needing to rest etc. Since I stopped working and had less stress in my life I've felt better than ever. I haven't used pain killers for ages, just the anti-TNF + Methotrexate. At one point there was a misunderstanding about the dosage of mtx and I reduced it, and really felt the difference. At present they say I'm in remission - but I still have stiffness and fatigue. But I do a lot - evening art classes etc.

    So I would recommend that you give it a go. I hope you don't feel too afraid, the med team will watch you carefully I'm sure, if they're as good as the ones who look after me.

    XX Cathie

  • I have been on enbrel for about six months and havenot looked back !

    it is amazing !

    sorry to rush but just about to stuff my face with pasta !

    dont hesitateto take it - x x x x

  • I agree, it is a stab in the dark. I chose mine partly because it was new at the time and because of the large syringe designed for arthritic hands. I have extremely poor grip. I wasn't sure how I would get on with a syringe rather than a pen but I actually prefer it. I feel more in control and can inject the fluid slowly so it does not sting.

    I was having flares every 6-8 weeks for 2 years before my new consultant put me forward for anti-TNF testing, (it's a long story as to why it took 2 years to get there). I have been on Cimzia for 18 months and have not had a full blown flare in all that time, only 2 flares in my shoulders.

    I hope you find that, like many others, anti-TNF will change your life for the better. Let us know how you get on.

    Jo

  • I've been on enbrel for 14 weeks, 80% better!!! and this morning I went to the GYM :)

    Hope things work out for you to, has been great reading all these replies!

  • Hi,

    I'm on humira 2 years self inject twice a month with pen very easy. Go for it you have no choice remember the damage is being done while the disease is active!

    Kind regards, Gina.

  • Thankyou, Thankyou all so much for your lovely advice and experience. It really is nice to hear others stories.

    Im going to read the booklets over tonight, but they are not starting me until November end anyways so plenty of time to mull over them.

    Im actually looking forward to it now as it does seem to have improved others quality of lives....If i can get down to the floor and play with my two boys, and go to the shops alone, even maybe get back to doing abit of work...then it will be a sucess.

    x

    Lisa

  • Hi

    Just thought i would add to my message last night, I agree with Gina, unfortunately as the doctors say i was 'born too soon' and i had nearly 10 years of very active arthritis before any Anti TNF's came out, therefore i now have 2 hip replacements, 2 knee replacements, left wrist fused, both feet fusd and am awaiting both of my ankles to be fused ;-( this is mainly down to the fact that while the disease was active and not controlled the inflammation was sooooooo bad that it damaged most of my joints, if i had been lucky enough to have Anti TNF earlier this probably wouldn't have happened as now my Arthritis is practically burnt out, and i am just left with the mechanical damage and associated ill health of RA. Haveing said that i am also lucky as 100 years ago we would have been left to die, and 50 years ago we would have been put in residential care homes!

    I say go for it hon, don't be scared and give the drug a try.

    Ella xx

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