Question

Loubie12

Hello,

I am new to this forum today and have been diagnosed with AS. I am being assessed for anti TNT and wondered if anyone had any experience of it? I am quite unsure having read a lot about it but just wanted a few opinions of it. Although anything has to be better than this!

Thanks in advance if you can help.

dreamdaisy

Hello, it's nice to meet you and I am pleased you have found us. I can assure you that anti TNf bods on here are many and varied. I am on my third (I've done infliximab, enbrel and I am now on humira supported by injected methotrexate) and although it's not doing what I want it to do I think it is helping to slow the progression of my psoriatic arthritis so that has to satisfaction enough. Those who are having a very good time on them don't post that often (if at all) but these drugs are like all medications: they can work wonders for some, have a half-hearted effect for others and do s*d all for a minority.

I didn't think twice about taking them, I have a life-long 'drug' habit thanks to auto-immune rubbish from childhood and as a result meds and side-effects don't bother me that much. The monitoring when on these meds is pretty thorough and important as it is that which may pick up the first signs of the body not coping that well. The only way to find out is to try and I hope that whichever one is your anti-TNF of choice proves to be the one for you. I wish you well. DD

Loubie12

Thanks. I have been having problems since I was 16 and am now 41. Only just diagnosed after thinking I was going nuts with all these strange symptoms and pains. I am glad to have found this forum today and I am sure it will help me through it.

Thanks

tjt6768

hi, and welcome to the forum.. I've not got any experience of these types of drugs but DD is right, all meds work different for different folks..
I do wish you the very best with everything. And now you've found us, you know that you're not alone..
We are a friendly bunch..

Best wishes

stickywicket

I know there are more on here who take them but they don't seem to be around right now. Hopefully soon.

welshgooner

Hi there
I have been on Embrel which worked quite well for a couple of years but then just stopped. I am now on Humira along side Meth. It is not working at the moment but I am hopeful in the long term. Embrel worked from day one for me and I wish it could still be so now because the Humira is not having the desired effect. My advice to you is try it, you never know,it might just work. All the best
Den.

lindalegs

Hi Loubie and welcome from me too.

I started Enbrel last November and I felt improvement immediately. I feel so much better and have even found something called 'energy' again. I also sleep better than I've slept for years (a) because I'm more comfortable and (b) my brain 'races' less at nights.

I'm enjoying everyday that passes because I know it may not last.

Apart from a quite serious urine infection (which I've never had before) I've had no side effects whatsoever .................yet.

I would recommend it for to feel human again is just wonderful.

Luv,

phoenixoxo

Welcome Loubie,

My experiences with anti-TNFs began in August 2006, with self-injected Enbrel. I'd been a bit nervous about injecting, but a nurse visit from the company that delivers the medication laid my worries to rest. I'd been anxious also about suffering side effects, but patients on this type of treatment have regular blood tests to pick up any problems asap.

Effectiveness does vary from person to person, as shown by the responses on this thread. Enbrel has proved effective for me, but Humira has not. Blood tests will reveal whether or not it's working for you, and in some cases it takes up to three months to show improvement.

Good luck to you, whatever you decide to do

Best wishes,
Phoebe

frogmorton

Hi Loubie

Just a welcoming hello from me

I am so glad you have found our forums....they have helped me such a lot and I am sure you will get as much benefit as I have.

Love

Toni xxx

tillytop

Hello Loubie and welcome!

I am on my third "biologic" 2 of which have been anti-tnfs. Infliximab was my first and, for me was an absolute miracle, giving me 5 virtually RA free years! Humira was my second and that worked well too - although not quite as well as the Infliximab. Unfortunately, over time, both disagreed with me and I had to stop but I wouldn't have missed those good years for the world. I am now on a slightly different biologic, Rituximab, and that too has been good for me so far.

I know not everybody has the same success with these meds but it's got to be worth a try if it might help you. After many years of RA meds I now take the attitude that I will do whatever I can to feel as well as I can - and if I try a drug and it's not right for me - well I can always stop. That "mindset" helps me to deal with the fears which naturally accompany starting new meds.

Really hope if you do go down the anti-tnf route that they help you as much as they have done me.

Tillyxxx

Loubie12

Thanks everyone. That has helped me and thanks for the welcome i am glad i found you. ))