So is it bye-bye humira?

salamander

A bit of a shock to get that kind of news. Any idea what they propose you should do instead?

Keep your chin up DD. You will get through this.
Sal

dreamdaisy

I'm not sure if there will be an instead - and to be quite honest salamander they can stuff it if there is. I am fully at ease with the fact that I cannot be 'cured' except by the drug I have now almost weaned myself off (the pred - 1 mg every alternate day now which is an achievement!) and the dullers. I am sure I can manage with just the dullers, after all I do for eight to ten days of the humira fortnight. I think my body needs a break from all this junk, as well as my mind. These are powerful meds, they do mess stuff up, I won't mind not having any for a while. My arthritises can do what they damn well want - and in truth they do, drugs or no. :roll: DD

(I'll get back to you on this when necessary when I am being forced to eat my words having spent a fruitless week banging on rheumatology's doors demanding ANYTHING they have going!)

wallysatt

Hi DD,

I’m really sorry for the long reply and I’m sorry you’re going through this at the moment but I would like to share with you my story of anti-TNF.

At the beginning of 2010 it became obvious that I wasn't reacting to treatment as we would have hoped so it was time to change. My local PCT only allows 3 go's on anti-TNF/B'cell drugs and, by this point I’d been on 4. Infliximab (which doesn’t count in the 3 as I reacted badly to it), Humira, Enbrel and Rituximab.

I, like you thought I had no more options and thought rheumys couldn’t do anything else for me. I thought my arthritis had progressed so much that I was never going to get better. My rheumatologist decided to apply for specialist funding from the PCT to pay for the new drugs and luckily, I got it. In March of this year I stared on Toculizumab which has made a big difference, I feel better and my bloods are reflecting it which had never happened to me before.

I guess what I’m trying to say is please don’t give up. The thinking and research into this horrid disease is changing almost every day. I’ve been on anti-TNF for 10 years and there have only been 2 that have been any good, one of which put me in hospital due to a reaction. Sometimes I get so frustrated in being battered down constantly by drugs that are being pumped into me, they often make me feel worse and don’t work, but we have to try them to see where we can go next. I know that the way our arthritis is treated has changed over the last couple of years and some drugs won’t work for some but there are plenty more that will.

Keep your chin up and stay as positive as you can.

Sally.

dreamdaisy

Hello Sally - or are you Wally? I'm not sure. :oops: That wasn't that long a post and I am very grateful that you took the time to reply. Someone has told me that the 'three strikes' rule has been amended/dropped, but as my TCP is in such dire straits I reckon I will be waiting a-while for whatever they want to do next. Tocilizumab was mentioned (and I know of someone else who has been having good results from it so that's two of you!) but fundamentally I am in stubborn mule mode and likely to remain there for some time. I am tired of hearing the benefits the medicos peddle about their latest wondrous poison, I can still hear the reckless promises my consultant made to me in March/April of 2009 (you'll drop the sticks and won't need pain meds - oh for crying out loud :roll: ) which in spite of my better self I believed. I can't be doing that rollercoaster again, not until I'm off the citalopram and the light box is working in its place!

Am I so wrong to want a break from it all? It would appear that I am but unfortunately I care not. I've had enough.

Right, it's back to the stairs game. Ma has gone and I am sorting out the beds etc. 112 stairs done, probably another 56 to go. Ye gods. :shock: Arthritis? What flaming arthritis? I don't have that! DD

salamander

You are not alone in wanting to do without the meds. I am coming off Cimzia because I am ill all the time, and I mean all the time. Supposed to be trying Enbrel but am reluctant because of the infections. Am meeting my nurse in a few days to discuss further as told her of my concerns. The thing is, I don't think I really have much choice. Even on the pred, a month off the drugs and I'm feeling it. We are all between a rock and a hard place.

tjt6768

I an so saddened by all this as I know a friends is in bother and there is nothing I can do to help.. I truly hope that you know I would do whatever I could to help you hun..
You've been such a huge support for me in here since I first joined just over a year ago and I feel I owe you such a debt of gratitude.. Just don't know how to pay it back..
All I can say is that you know where to find me my dear dear pal
It will get easier, I'm sure it must...

Plus, over looked back into the crystal ball

cacyhi

Hi DD

It must be so hard to stay positive, after all the experiences you have had with different drugs over the years. Yet, inside, everyone must hope that "the next one will be the one that will make a difference".
Its still your life and you have the right to be in control of it. Its hard making choices from options that have no guarantees of success. You always sound to me like someone who knows their own mind, so, in time you will decide what is best for you. I'm just sad that the whole situation is causing you so much pain, physically and emotionally.

by the way, if you find a way to get off citalopram without all the side effects - please let me know !!!!

dreamdaisy

I no longer think that the next one will be the one. It's far easier to think it won't and then I might actually be surprised. As if.

I've had three goes at the cutting edge meds - God only knows what they cut - yoghurt? I am happy they work for some but I am now happily reconciled with the fact that they are not for me. Enough is enough.

My name is not DD but I have arthritis.

traluvie

Hi DD,

Sorry i missed this..
How awful that something that was helping may now be taken away..
Money in the NHS is shocking..I have seen the amounts of money they waste on ridiculous things(i will not expose them, although i really wish i could lol)
I don't know what to say luvie, other than i am sorry to hear about this and hope something is sorted for you..(((((X)))))