Is anyone on Etanercept the anti TNF drug?

baarmychris

Hi Forum,
I have had Rheumatoid Arthritis for a few years now. I started on Sulfasalasine which progressed to Methotrexate injections (I'm on both) but today, after a visit to the hospital, I've been told that there is more erosion in my feet joints and with that positive blood tests. The specialist nurse has now told me that I probably need to go onto Etanercept as Methotrexate has not been effective for me. I have suffered lots more pain and flares in the last 6 months and find it harder to walk.

To be honest, I've struggled with doing the one injection let alone another one, and the fact it will be a different day doesn't stop me from being apprehensive. Also the side effects are far more serious.

On one hand I know I will end up on these drugs but the other hand I'm scared. I can't expect friends to understand how I'm feeling which is why I joined this forum. Hopefully someone can help me through this with any suggestions or experience on this medication.

I hope I haven't written this in the wrong topic area and if I have please accept my apologies. :?:

salamander

Hi Chris
I am on etanercept. I take a half dose (25mg) and split it so have two injections a week. It is working quite well in spite of injection site reaction (which you need to report) and a couple of infections which have cleared up quickly with antibiotics.

I felt much like you before I took it but the constant pain really got to me. I had the pen injection for the first two shots and found it quite painful but very easy to do. Now I have something similar to mtx injection and it is quite painless to administer.

As for the side effects, the serious ones are not common, I understand, and the others are similar to mtx as far as I know. I feel much better in myself on the drug so think it is worth the risk.

I'm very tired today so not particularly coherent but do ask if you want to know anything else. Best of luck.

Numptydumpty

Hi baarmychris,
welcome to the forum.
I have RA. I have tried two anti tnf's, Humira and Enbrel (Etanercept). Unfortunately neither worked for me. I am now being offered Retuximab, which I have refused. I just don't feel ready for that at the moment. I am currently taking 25 mg meth. I keep trying to increase this to 30mg, but I can't tolerate the side effects, Hydroxychloroquine, and preds, along with various painkillers, anti inflammatories, stomach protectors etc.
All the drugs can have side effects, and everyone reacts differently to them.
I do know, without the meds, RA will do a lot of damage.
I hope Etanercept works for you.
Good luck.
Wishing you well,
Numpty

[Deleted User]

Hello baarmychris,
Welcome to the forum. This is definitely the place to write about your treatment.
I was on etanercept for two years, and at the beginning it worked for me very well. Actually, I felt the difference after the first injection! At first I had two injections twice a week, later I did a double dose in one injection once a week. It was really not painful and didn't bother me too much, even though at the beginning I was a bit scared. The only side effect I had was redness of injection site, but it passed after a few months.
It is quite normal that you are scared. I think we all are before starting new treatments. The lists of side effects are scary and injecting yourself isn't very pleasant either. It sounds though like you really could do with a better drug to ease your suffering.
I'm sure that there are many folks here who were or are now on entanercept and can answer any of your questions, and you can definitely ask me too, and I will help you if I can
Take care,

phoenixoxo

Hi and welcome, baarmychris,

I've been self-injecting etanercept for psoriatic arthritis since 2006, on and off. It works well for me in combination with steroids, hence 'on and off' as consultants have proposed other treatments that have failed.

It's true that there are serious side effects associated with anti-TNF treatment, but what reassures me is having regular blood tests to keep tabs on anything nasty. I hope your specialist nurse has mentioned this.

When I started etanercept, a nurse from the healthcare company visited to talk me through everything and to supervise my first attempt at self-injecting. It may be worth finding out whether this will happen for you too. Fortunately I've no fear of needles, but anxiety about side effects is enough to make anyone come over a bit shaky!

Good luck whatever you decide to do, and keep us posted!

Best wishes,
Phoebe

dreamdaisy

Hello, it's nice to meet you and I am glad you have found us. I tried etanercept a few years ago, it did very little for me but that was back in the days when you had to fail for two years on DMARDs before the Holy Grail of anti TNFs would be offered. The thinking has now changed and that is a very good thing indeed. Yes, the risks appear to be awful but the monitoring that one is subjected to is there for a reason - and I know from experience it works. I am now on a combo of sub-cut meth and humira injections (adalimumab), I do the meth weekly, the latter fortnightly. It's too late for me to have any true benefit but I feel that they are keeping the PsA under control. They don't touch the OA (caused by the damage to my knees and ankles from the PsA) but one can't have everything. :roll:

There are many of us on these meds and those for whom they are working well rarely post. The only way to fiind out if this is the med for you is to try: I sincerely hope it is and that you gain the benefit these meds can offer. Good luck, I am sure all will be well, keep in touch and do let us know how things go for you. I wish you well. DD

Colin1

Hello Barmy yep been there althogh im not on it now.
Injecting takes a little getting used to and yes i understand your fears the side effects do get better and i prefered the side effects from that than other stuff i had to take. The methotrexate is a killer with me.
OK open up the pack, take out and lay out the things you are going to use
Dont think about anything els just do it as quick as you can then its over. As you know you can hardly feel it its just the thought of doing it.
Good Luck and take care
Colin

baarmychris

Hi Salamander, Numptydumpty, Nesia, Phoenixe colin1 and Dreamdaisy,

Well, thanks for all of your prompt replies. I am blown away by your answers to my anxious first post. I can already tell that I've stumbled upon a fantastic forum.

It's nice to know that there's a lot of us in the same predicament. Although I'm sorry to hear of your pain too. I can now see that, although I've been worried, there will be someone who I can talk to which, believe me, will be (and has been) a godsend.

I will go ahead and try the drug. After all, it's the pain and damage to the joints that needs to be helped. I'll have to overcome my fear and I'm sure I will cope. I'll have no choice really.

Thanks for introducing yourselves and for the lovely replies.

I will keep you posted.

Cheers. Christine