Hi Barbara
I was offered a choice of anti tnf and chose Enbrel as it had been around the longest and injects weekly so I would find it easier to remember. I previously was taking sulphasalazine and methotrexate 20mg having had to stop hydroxychloroquine due to a skin reaction. I have been taking the Enbrel for several months and am delighted with the results. I am off to the rheumatologist next week and hope to stop the sulphasalazine.
Wishing you every success with the treatment.
Best Wishes
Sue

Hi Barbara

So sorry you continue to have these ongoing problems and nothing more than a flickering light at the end of the tunnel. Fibro does seem to throw the proverbial spanner in the works and certainly doesn't make it easy to differentiate one pain from another.

Sadly I think the NHS is losing it's way in yet another area. Giving patients a bundle of leaflets and asking you to go away and decide which you want to try is to me unacceptable. We are not medically qualified to assess our own disease never mind the appropriate treatment. So much is said about the cost of all these anti-tnfs drugs so surely to goodness we should be guided by those in the know ... not sticking the tail on the donkey and hoping for the best! That said if the first one fails you may get the chance to try a second before moving onto a drug with a different mode of action. All anti- tnf's work by blocking the action of tumour necrosis factor, a chemical messenger, thereby reducing inflammation. In patients who respond to anti-TNFs, the improvement is often impressive, life-enhancing and sustained. Fortunately they all work, or not, equally well and the choice comes down to personal preferences.

Things to consider might be

1. Track record of the drug and how long it has been around.
2. Method of administration, infusion in hospital, self injection using an epi-pen or needle and syringe
3. Frequency of dosage, twice weekly, weekly, fortnightly etc.

Other considerations might include the half life of the drug, rheumatologist's own preference and the molecular structure of the drug (some work better for some than others depending whether your RA has travelling companions)

I think the whole thing is a ruddy minefield and suddenly you're left with making a decision that may affect your future well being. I am not surprised you are confused!!

However, I have tried two anti-tnf's. First Infliximab (Remicade) which is given by infusion. Really good success with this and I felt the benefits almost straight away. Unfortunately, for whatever reason, it started to lose it's efficacy after 12 months and I switched to Enbrel (went on a trial so no choice given, thankfully!). This in combination with methotrexate has been a brilliant drug and really slowed down the onslaught of the RA (although at the moment I'm without the MTX). I have been on Enbrel twice weekly for 7 years with no problems. Humira seems to be equally successful in those that use it. Cimzia is relatively new and less is known about the long term effects simply because it hasn't been around as long.

NRAS offer a really informative publication called "Biologics the story so far". Worth requesting a copy as it will give further insight into each drug.

As regards the fibro have you had a definitive diagnosis? It sounds as though the doctor isn't too sure! I once asked, when in a lot of pain, if I might have it. The answer was ... oh, probably!! Gadzooks ... how does that help anyone?! I actually don't have it! Have the 18 pressure points been checked?

I know I'm writing an essay (really just trying to help!) but do sort out the pain relief with your GP! You would feel so much better with the right pain control for day time and something more suitable for bed time (says she in the middle of the night ). If we have to keep poppin' all these bloomin' pills they ought to be working for us!

Let us know how you go on Barbara. Keep your pecker up, things will get better

Lyn x

Hi Barbara

Sorry to hear you have fibromyalgia as well - my mum had that too.

I chose Humira in the end. My consultant thought it would be the best option bearing in mind I was happy to do injections myself at home every 14 days. I've been on it since Feb and so far my wrists and fingers are back to normal. I'm still not at the 3 months yet... but so far I am very pleased with it.

In terms of pain relief, I was prescribed oramorph (morphine) by my GP. I only take it when I am really desperate!! But it is nice to have it. At the moment though, the Humira seems to have brought down the inflammation, so I don't need the pain relief. My shoulder (which was a previous injury) has improved a bit, but not completely and my knees, although slightly swollen havent got worse in the last 6 months. So I am generally very happy with Humira. I was on 15 mg prednisolone in November, but I have now got this down to 6 mg so far.

I also take 10 ml of sulphasalzine and 1 tablet of leflenomide. i think I can reduce these at some point - but can't remember what they said last time!!!! Bad memory. Fortunately I go again at the end of the month!

I do have an added problem of nerve pain from having had guillain barre 5 years ago - which I still have - but at least not joint pain as well!!

Hope this helps a bit.
Anne

Hi Barbara,

I didn't really have a choice of anti-tnfs, I went on a trial for humira and then after the trial was allowed to stay on it.
It hasn't been the cure I was looking for but it has helped me a lot and I wouldn't want to be without it now.
I think I would have chosen humira anyway, purely because it is only one injection every 2 weeks ( although I have them every 12 days now ) and it's self administered at home, so the most convenient.

Good luck with your choice, and I hope whichever you choose turns out to be your wonder drug!
Love, Doreen xx

Barbara

Just catching up on your post. I have tried both Enbrel and Humira but unfortunately failed on both but that is just me.

What I wanted to say to you is also find out how you are going to administer the drug. I firstly went for the one which was administred by a pen as I thought I would cope better without seeing a needle. However, I did find that the pen was difficult to administer as I do not have good strength in my wrists and fingers and I found it very difficult to press the end of the pen to adminster the injection. When I failed on this first anti-tnf I did not have the choice of a pen and had to use a normal pre-filled syringe needle. I was really worried about looking at a needle and inserting it into my skin. If only I had known how easy it was I would have opted for this choice every time. It was easy to do and with a good pinch of skin I did not feel a thing. I found that the pen did sting quite a bit.

As you I was also given the choice of which anti-tnf I wanted to use. I went to my GP and he looked blankly at me and said he could offer no advice. I read up on both of them and decided which one to go with and which had the least side effects. I went to see my RA nurse to tell her which one I had chosen and she said "well actually the Consultant prefers .........." so I went with his choice in the end any way. As Lyn says, the choice should not be left up to us.

I hope you find the right one for you and yes you should get a second choice if you fail on the first one.

Take care

Jackie
xx

In reality I suspect it will be a few months before we see the prescribing of Simponi ... wheels of industry grind very slowly! Also, there tends to be reluctance amongst some practitioners that they cannot forecast how new drugs will work for their patients. Many do choose to stay with well known drugs with longer term outcomes that have been tested and documented.

I am on injection twice weekly and that aspect doesn't concern me at all. If anything it is beneficial as the drug dose is kept topped up. Longer acting drugs sometimes lose their potency as time progresses requiring more frequent injections. Plus, the worst bit ... longer acting means more preservative and boy can that sting!!

Lyn x

Definitely ... but really, there's nothing to it!!