How many Anti TNF's? Is there a limit?

kellis

I'm on my 3rd Anti TNF which isn't working.
I had 2 years on remission with Humira before it stopped working, a year on RoActemra (tocilizumab) which was good for about 2 weeks of each month but then wore off, and have been on Cimzia for 4 months now which was fine for the first 6 weeks (double doses) but is now having no effect whatsoever.
I've got my rheumatologist appointment in 3 weeks and am biding my time taking paracetemol and anti-inflammatories to get me by until then.
I'm assuming I will be taken off the Cimzia when I go to see her, but what next? Is there a limit to how many Anti-TNF's I can keep trying, or is it a case of keep on going to see if there is one out there which will eventually work for me? Getting a bit cheesed off now as I get so hopeful each time I start something new only for it to go pear shaped again.
Bored of the view from my settee!!

dreamdaisy

With my health authority it's three strikes and you're out. I for one find that when I do my humira (which is my third and final) I have slightly improved mobility (I can use my crutches) for about five days then it's all back to normal (viz I need my rollator). I learned early on that they do the business for a few days then it all tails off but that could be because I was given them far too late on in my arthritis journey: I had to wait for four years whilst I experimented and failed with sulph, sulph and meth, sulph and lef then finally sulph and cyclosporin. Now my hospital proudly boasts that you can go onto them after a mere six months which I am sure must make a difference to the outcome. DD

trepolpen

you could try Golimumab , one of the newer anti-tnf or one of the b-cell treatments like rituximab which they may want to try , you have to have tried two ant-tnf's to get it

kellis

I wonder how they decide which one to put you on? Is it just picking straws from a hat or is there some system, I wonder?

I'm in France and the funding seems a lot better than I hear about the UK waiting times for the biologics, so hopefully I can keep going to find something that gives me some relief. Slightly worried about the 3 strikes and your out, because I'm not ready in my mid 40's to spend the rest of my life in this amount of pain!!

charleeh

Hi
I have sero negative arthritis and have been on humira, infliximab, rituximab and now am on tocilizumab : I am now told that this tocilizumab is the 'last resort drug' for me. I am 22 & in England. You have mentioned drugs that I have not heard of on this post so I am curious.

I do wonder if there is a certain order to these type drugs, do they go up in strength for example or is it done by a different means.. like the cell it works on? I presume the cheapest option is given first, methotrexate is very cheap so they try that first. I know this as humira comes in a 'pen' injection and my nurses had asked the manufacturer's of methotrexate to put it into pens and they said no as the pen would cost more than the medication is worth!!!

I worry about the funding that our hospitals get - it will have an adverse effect on the treatment we get I am sure with all of the cuts.

just a quick question... when you have your IV do they flush you through with the other liquid before and after or just after to empty the tube? I feel sure they used to clear the tube with a saline liquid first and then after as well - they only did mine after the last couple of times and I worry they are not giving me the full medication as a bit will be wasted when they are getting the air bubbles out the tube :roll:

Best wishes
Charleeh

kellis

Charleeh, when I was on the infusions they used to hang 2 bottles on the hook with 2 tubes which joined into one. One bottle was marked 'tocilizumab' and the other was blank. When the toc. bottle was empty they used to run the other for about 10-15 minutes which I think was tube clearing. They never ran the blank bottle first. Hope this helps.

Starburst

Hi kellis,

Things sound tough at the moment. Sorry you're having such a difficult time. With regards to how they decide, my health authority usually try cimzia first because the PCT don't get charged if the patient doesn't respond and/or has a poor reaction and comes off the drug within 12 weeks. I heard that some anti-TNFs work slightly differently and on American forums, they have seemed quite clued up. I know that they won't give Rituxan unless you've 'failed' another anti-TNF which I originally thought was due to cost to NHS in the UK but it's the same in other countries.

If you're on facebook, I can recommend a great page - very informative but not too full of jargon.

All the best!

lulubell69

Hi kell
I'm 44 with severe sero negative arthritis (9 years) and I have tried most of the anti tnf's, most either haven't worked or stopped working after a while. I had an anaphylactic shock to the last one, very scary. My consultant has recently suggested I start a new drug called certolizumab but it has to be funded for by my gp, so fingers crossed.
If this treatment fails I am going to be referred to a professor at Newcastle as he is at the forefront of research and trials.
So, in my area, cost doesn't have any bearing, but running out of effective treatments now.
Good luck
Les

salamander

Les, certolizumab is Cimzia, an anti tnf, as far as I am aware. It's odd your gp has to fund it, it's usually the pct, or whatever it's called now, that approves funding. Maybe things have changed. However, I know this drug company funds the first three months for free.

I didn't get on with it, great for the first 6 weeks when you have a double dose but less effective for me afterwards. Plus I got lots of infections on it but I hope it does something for you.

charleeh

Thanks Kellis,

I am having treatment on Tuesday so I will see what they do this time lol

I hope everything goes well for you.

I too have had a string of infections, a tooth abscess, Noro Virus, then celulitis in one foot which cleared up and then came back in both feet whilst on holiday in New Orleans which was awful as I am still going through an insurance claim for the hospital visit I had to make! :roll:

I keep a bottle of hand gel in my bag at all times and I use it religiously... And try to avoid 'germy folk' LOL although being a city dweller it is hard lol

Best wishes
Charleeh

kellis

Starburst wrote:

If you're on facebook, I can recommend a great page - very informative but not too full of jargon.

Yes please, I'll take a look....

Starburst

Info I found on different types of anti-TNFs if anyone is interested.

Different types of biologics for RA target different substances involved in inflammation. For example, some biologic drugs bind tumor necrosis factor (TNF)-alpha. Others inhibit interleukins (interleukin-1, interleukin-6). Still others interfere with the action of T cells or B cells. Inflammation is the primary cause of painful symptoms and joint damage in RA.