Anti-TNF's Question

alarkra

Hey,

I've been thinking a lot about anti-TNF's and doing reading about it. However, there is one thing that I can't seem to get any clarity on. How long can you take anti-TNF's for? Is there a limit? And if so how many times can you have them? It's looking likely that I may be put on them when I go back to see The Man in January, so I'm wanting to get as much info as possible so I have enough time to understand what I may be getting myself in to if he gives it the go ahead... :shock:

salamander

hi Alarka, I'm in the same position as you so hope you don't mind if I hijack your thread lol!

Wonkylegs

as far as I understand it from the questions that I asked when first told I was going on anti-TNF list, they have been using the drugs in total for about 15 years (7 in trials and about 8 in full use) so at the moment there will only be statistical info / medical notes for that length of time.

I believe there is a register of all people on biological therapies, which keeps track of all issues related to the different meds (sorry can't remember where I read this, but helplines might know more)

I am waiting for my appointment for first Infliximab infusion in the next few weeks.

hope that helps

WOnky

dorcas

Hi alarka

I don't think there's a time limit for being on the anti tnfs... much depends on how well each works. I asked my rheummy the same question when I first started Enbrel as it was in it's 'trial' stage then and was told I would remain on it as long as it was helping me.

I did have to stop Enbrel (reaction) and moved on to Humira and was on that for 5yrs before it stopped working for me (antibodies) and am now on Infliximab infusions.

The frequency of the anti tnfs depends on the drug itself and on what the rheummy decides is your optimum dose. Some are given by injection and others by infusion.

People on anti tnfs details are held on a 'Biologics Register' and your progress is carefully documented and monitored.

Hope it works well for you when you get started.

Iris x

dreamdaisy

Hi alarkra, I don't know if I can shed any light on this. I started infliximab but only lasted three (or possibly four infusions) before I began to produce antibodies that stopped it working, so I came off that. I then (after a decent interval) began enbrel but that tried to explode my liver (I developed an intolerance to that, I think) so I came off that. I then had two years on meth etc and then began humira in July 09. It has reduced my inflammatory markers to single figures so I shall stay on it for the forseeable future as this pleases the powers-that-be. I don't think it has had that much effect on the PA - I am still on crutches, still on pain meds and still flare, but I am past caring now. Someone posted on jenzie's thread about humira that it had basically given them their life back, they had ditched the sticks and the pain meds. I felt my heart break when I read that and I don't think it will ever mend. These drugs do work very well indeed for some, reasonably well for others and not that well for the rest. I sincerely hope that you are in the first category! It is so true that we all vary so much in our individual responses to the same drugs. I wish you well. DD

alarkra

Thank you all for your helpful insightful posts. As Salamander is going for her anti-TNF assessment tomorrow, it will be interesting to get further information about it. The thought of anti-TNF's excite me yet terrify me...! :shock:

salamander

Hi Alarka, Just remembered was sent a booklet about the biologics from national rheumatoid arthritis soc. It answers all those tricky questions. I rang their helpline and they posted it out. If that helps any?

dreamdaisy

Hi katyk, which one have you been on for three years? DD

cthornley

I've been thinking and talking about this a lot recently too as I have been told by my rheumy that she wants me to go down this route too....I'm resisting as I’m a stubborn pain in the **** but it is in the forefront of my thoughts constantly.
I asked a lot of questions about it and one of the things she told me was that if it worked it would be like the MTX, more than likely a for life treatment as it doesn't cure you but switches off the bad bits (a protein I think) so stops the progression of the disease....however if you stop it is more than likely to switch back on again (although not definitely as these are crazy diseases and like to surprise us all the time)
This took me aback when she had already told me how much it costs a year and a quick mental tot up made my mind boggle on how much the NHS would end up spending to keep me going if it worked :shock:
hope that helps
Chrissie

julie47

Hi alarkra

Not on tnfs but reading your thread and find it interesting as to what people are saying.

Hope they work for you.

juliepf x

sullivt56

Have been diagnosed for many years with RA and done all the usual treatments.
Had my assessment for anti tnf before Xmas. I have psioratic arthritis which apparantly gets u more points. The Rhemutoid Nurse said that it was about how many joints were swollen...
Just waiting for the call as am on to the next stage. Also Diabetic so injecting is nothing new as do it 4 times a day, however it can become painful at times even with the thinest of needles.
Really looking forward to the treatment as could not walk for 4 weeks in the summer when had massive flare up that trapped sciatic nerve and ligament down left leg. Never experianced pain like it and the bonus side effect for me is that it will clear my psoriasis as well......

alarkra

Hi Sullivt56,

I'd forgotten I'd set up this thread, but have just re-read everything... and my thoughts remain unchanged, it is rather a terrifying thought about going on anti-tnf's, but myself I have had the cocktail of meds and then the all-over steroid drug which works for such a short time... it's wearing off again as I type, so my hands, elbows and knees are ceasing up again... it's heartbreaking... I'll just to wait until I see The Man to see what his verdict is, which will now be on Valentines Day (not my idea of a perfect date to be honest! ) So, it's just a waiting game.

Do let us know how you get along Sullivt56, we'll all be interested to know what they suggest for you. 8)

dreamdaisy

Any drug is terrifying. If the anti TNF works, you will soon lose your fears. I have never thought about the down-sides of them, apart from the biggest one of all: the complete and utter disappointment they have delivered. I think about that a lot. DD

dorcas

Hi Alarka and welcome sullivt

I've been on a total of three anti tnfs and like DD said didn't dwell on the possible down side of being on them... but concentrated on the potential huge benefits that these sophisticated drugs can bring!

I hope that whichever one the rheummys decide are best for you that you'll reap the benefits.

please let us know how you get on.

Iris xxx

tkachev

I prefer the anti-tnf's to Methotrexate. For me no bad side- effects apart from more likely to catch any cold going around, much less pain and something resembling life again. Methotrexate was lots of side effects, nausea, and still in lots of pain. I would definately give anti tnf a try.

Good luck with whatever you decide,

Elizabeth

alarkra

dreamdaisy wrote:

Any drug is terrifying. If the anti TNF works, you will soon lose your fears. I have never thought about the down-sides of them, apart from the biggest one of all: the complete and utter disappointment they have delivered. I think about that a lot. DD

It is the thought of them failing that frightens me a lot. However, I'm really game to give it a go if he offers it up.

I do have one question though - I've read quite a bit of literature and wondered if one can have just the anti-tnf on its own or if it is standard procedure to use it with mtx alongside?

cherrybim

Hi Alarkra,

I take Cimzia on its own. Meth, sulfa and cortisone are all no goes for me.

Good luck


Cherry x

dreamdaisy

It's usual to do meth alongside, apparently. I didn't have meth, either tablets or injected, with the inflix or enbrel. (I cannot remember why). I have had meth alongside the humira. This has had a greater, more long-lasting effect than the others, whether that is due to the meth or not I have no idea. DD

mp1952

Hi sullivit56

I am due to start an anti-tnf (Humira) at the end of January - hopefully - so I am somewhat anxious and excited about the prospect of it working and giving me a good 2011..

(btw my nurse told me that they have discovered that, for some people, if they stop Humira because of, eg, an infection, and then re-start it, it is not always as effective as the first time round .. so I'm going to the dentist to sort out any teeth/gum problems before I start it, and also getting some toe nails removed shortly, as I keep getting infections in them)..

Keep in touch.. there are a few of us on the forum starting anti-tnfs in Jan/Feb so it will be interesting to see how everyone gets on..

Marion

sullivt56

Passed the final outstanding test...a negative for TB.. Knew that already so just waiting now to be contacted for drug issue etc.....wish they hurry up...

sullivt56

Hi Alarka well after a bit of a journey getting the funding etc finally had the first injection yesterday. I swear the leg that I injected into feels more mobile but it is probably psychological effect.
Even though I am diabetic and inject insulin 5 times a day the enbrel injection hurt like stink and indeed bought a tear to my eye but I think that was more down to my expectations rather than anything else. I thought it would be as painless as my insulin not realising that this is a big injection....
So I am finally out of the starting gate and am excited as to what my progress may be.....

alarkra

Hi Sullivt56,

I'm glad to hear that you've managed to get started on the Enbrel but sorry that it hurt so much - hopefully the pros of the injections will completely outweigh the cons of the pain of them! :P

Sadly, I have been pushed around and felt fobbed off after seeing the consultants a week ago - being forced to try injectable mtx to see if that's more efficient... so I have to wait 3 months until I see them again when they 'may' decide to put me on anti-tnf's, even though that's what should have happened this time around! There is the smallest chance the injectable mtx will be more effective than the tablets, but I've been so ill since I started the injections 3 days ago, so I'm not sure that it's going to be worth the upset... so frustrated of having to jump through more hoops and sick of being unwell all the time... it's tiring battling and not making any progress :evil

I hope that everyone is having a lovely day tucked up indoors while it pours with rain outside. xx

towyview

I have been on Enbrel for 6 years. I think I was extremely lucky to be living in Wales as I know of a lady in N Ireland that waited 2 years before being funded for the drug. Although Enbrel has turned my life around I do believe I have hints that it is not as effective as it once was. I was afraid to mention it to the Rheums as at one time once you had tried one anti tnf you could only change if you had side effects. It seems N.I.C.E have now changed their minds and once the effectiveness of one type has worn off you can try another ( thank goodness)

D

phill

I have been injecting http://arthritis.about.com/od/humira/a/humiradeveloped.htm once a fortnight for about 6 months now and blimey what a difference its made.

I used to be so tired that I wanted to go to bed a 7pm I had to nap in my lunch at work or I couldnt do anything in the afternoon and I was seriously considering giving up work altogether because I couldnt see how I could carry on. Humira has stopped all that in its tracks, I know there are potential life changing side effects but I dont think about those and just wallow in the benefits.

My advice to anyone offered anti-tnf treatment is to go for it what have you got to lose, life is pretty poor anyway when you have our condition so anything to make it better has to be a positive move doesnt it?


Hope all goes well for you.

All the best

phill.

sullivt56

Week 1 went well. It would seem that my psoriasis has calmed down quite significantly, Am hoping that this is not phsycological.

Second injection was not so painful. I left it longer than last week to reach room temperature so there wasnt any stinging.

Hopefully will see some more improvement this week but am realistic of my expectations as want long term benefit for my joints.

My legs are much more mobile at the ankles and my sacroiliac joints seem to be responding which is a real joy.

Still early days I know and am hopeful that treatment will be positive...

dreamdaisy

I hope so too. I was promised the world when I began humira (which was a shame as it didn't turn up to my version of life's party) but I hope it does turn up to yours. It does work well for tkachev, scorpio (he has just begun it) and another forum member called phill (apparently they have their life back, which is good to hear) so I know the stuff is effective: I hope you will become a member of that elite! I wish you well. DD