Anti TNF drugs = SCARED

gemmarh100

I have had RA for 2 years and have tried numerous meds (naproxen, prednisolone, methotrexate, hydroxychloroquine, sulphasalazine) and painkillers. But my last trip to my Rheumy was not good.

He suggested that the next step would be to start Anti TNF drugs, which I am not sure about. I have heard that they are stronger and cause a lot more side-effects....??? Any had experience in this???

I am currently working 2-days/week and would hate to have to miss work. Please can people let me know what they are taking (if Anti TNF) and what are the side-effects? Also, if it is helping RA.

New treatment is always scary as it may not work...advice please

Take care,

Gem X

stickywicket

Hi Gemma. I see you have another post about pregnancy. I assure you anti-tnfs will not be possible if you're trying for a baby so I guess that's one worry you can postpone :roll:

dreamdaisy

They are stronger but side effects are not guaranteed, and because of their relative newness not fully understood. If you do start one (it's usually added into the mix rather than used as a stand-alone drug) then be conscientious in having regular bloods - it was my doing this that showed that one of them was not suiting me at all but I felt perfectly OK (it didn't tackle my PsA either). I am on my third now, but am many more years in than you and received them far too late for any noticeable difference to be made (I had to spend four years failing on the others ) I never think about side-effects, for me it's the quality of life now that matters, but there again I've been taking medical drugs for most of my life so I am accustomed to it all. DD

As5567

The Anti TNF drugs that I have taken are as follows:

Enbrel: No side effects, worked great for around 14 months and then gradually stopped working

Humira: No side effects, worked great for around 3 years in total and then gradually stopped working

Ritiximab: No side effects, Had to stop taking it due to infusion reaction

Infliximab: No side effects, worked great for around 7 months but had to stop taking it due to infusion reaction

Simponi: So far no side effects, not working so great possibly changing to another drug soon

Out of all the Anti TNF drugs I have taken there has been near to no side effects like the older style drugs. It's well documented that Anti TNF drugs are tolerated better than most drugs, why...well they dont know. But like with all drugs you dont know how you will react until you try, yes TNF drugs probably list more side effects but thats no guarantee you're going to get them, you also need to think of the positives. TNF drugs make some people feel so great that they can get on with day to day things with little to no pain.

Good luck if you do proceed to take one of the Anti TNF drugs!

Starburst

Hi Gemma,

I'm on my second anti TNF. For the first one, I read every single piece of information I could find and scared myself silly. For the second one, I read nothing but listened to what the nurse who taught me to inject told me. I would say that somewhere in between is probably a good approach. We are all different but I am currently not experiencing any side effects. I did get a headache after my first anti TNF but it wore off after I'd been injecting for a couple of months. I haven't needed any extra time off work as a result of these drugs.

Is there anything that is particularly scaring you that maybe we could help put your mind at rest?

Take care.

Creakykar

I'm on Cimzia following 3 unsuccessful DMARDs.
I take it alongside 120mg Arcoxia.

Side effects are minimal. I get a flushed face for the remained of the evening and a little tired the net day but nothing compared to what MTX did to me.

Sarahd1609

Hi Gemma,

I'm due to start etanercept soon and had to have the serious side effect discussion with my husband. I'm scared too, but I'm also scared of how low I will sink if this doesn't work. I guess what I'm trying to say is that if I read every leaflet of every tablet I'd ever taken, or injection got that matter, I'd never take it. Even paracetamol is as dangerous. I'm going to give it a go and hope it works. Good luck to you xxxx

barbara12

Hello Gemma
Sorry I cant offer any help, but just want to wish you well , like the others have said ,side effects are not guaranteed...

theresak

Hi Gemma,

I think it`s only natural to be scared about taking the biologic drugs - I was, but it was Hobson`s Choice, as I`d tried and failed on so many DMARDs.

I`ve been on humira ( adalimumab ) for almost eight years now, with no real side effects, and it has considerably improved my quality of life. Recently I started hydroxychloroquine alongside it, as I can`t take MTX.

Good luck.

AlexeyB

Hi All,

Am I right assuming all anti-TNF drugs should be avoided if planning a baby?

When do you think is the safe time to start taking those? I.e. can we try doing this after baby is delivered or shall we wait for some time?

Thanks!