Qualifying for anti-tnf

maddyc

I originally posted this in the chat to helpline team and they suggested I repost here in case anyone had relevant experience which could help.

Though English, I have been living in ireland for the last few years, had my children here and diagnosed with RA here two years ago. I was very promptly put on mtx and enbrel as part of a trial, when I came off enbrel when the trial was over I flared really badly and was put straight back on it. After a year, this combination started to fail me and through trial and error (also involving Arava and Plaquenil) I am now on weekly Humira injections and function normally. If I can't take the Humira because of infections etc I am in a dreadful state very quickly so know it absolutely works for me. The thought of not having it is terrifying.

However, for family reasons we would like to relocate back to England over the next year or so. I read the forum regularly and see that access to anti tnfs in the uk is not easily available. I would really appreciate an understanding of how patients qualify for this medication and whether the qualification varies geographically.

Additionally, I am looking for a recommendation for a good private RA consultant, preferably SE based, who I can sit down with - before we make any decisions - to understand my treatment options should we decide to make the move.

I apologise for the length of this post. If anyone can help, I would be really grateful!

Thanks

Maddy

mrsdalloway

Hi Maddy I had to fight for anti tnf over 18 months and I come from north west. (diagnosed 14 years ago and tried every med under the sun!) However, I have read posts on here about people talking about it who haven't been diagnosed that long so as you say it may be postcode lottery. Good luck! x

maddyc

Hi

Thanks for the reply, looks like it must vary region to region. I shall see if I can some more information from a rheumy. Thanks so much again and good luck.

Maddy

woodbon

Hi,
Firstly, I don't have RA, so my experience of these medications is not very good, to say the least. The Thought that crosses my mind is this, if you are already on a medicine that is working for you, would it be ethically right for a doctor to change this without a good medical reason? My own thought is that it should be continued without question, BUT that is my own common sense view. As you have already discussed, you need a proper medical opinion about this. The helpline, whose number is on the right hand corner may be able to point you in the right direction to find the help you need. They really are very good.

Good luck, Love Sue

jeannie2

Hi Maddy,
I've got RA, besides other things, and I'm at present being assessed for anti-TNF. It's been a long, long process and I'm still having tests .... had another one yesterday and now have to wait weeks for the results, before the clinicians meet. I also suspect that whether you are given this is postcode related - apparently it is VERY expensive.
Even so, I'm really quite anxious about the medication itself - all the rest haven't suited me at all.
Best of luck with whatever you decide to do.

mrsdalloway

Hi Jeannie please don't be apprehensive it is fantastic! It is the first treatment I have had without any side effects whatsoever! x