Infliximab: anti tnf

dorcas

Hi everyone

I have PA and am starting Infliximab infusions on Thursday. I am really hoping for great things with this drug, as it is my third.. and therefore final anti tnf. :roll:

wondered if any of you good folks are, or have been, on Infliximab?

would be really interested to hear about your experience of being on it, how long it takes to 'infuse' (sounds more like tea making ), how effective it was....basically anything you can tell me

thanks peeps,

Iris x

tillytop

Hi Iris

I had Infliximab for about 5 years and, for me, it was an absolute wonder drug and, as the rheumatologist commented at the time "it changed my life". Unfortunately I had to stop after I had an allergic reaction during an infusion - not a severe one, but enough for them to decide I had become allergic to it.

I hobbled in for my first infusiion and came out walking almost normally and nobody, myself included, could bellieve it. I was disappointed when that didn't last long though but, after just a few infusions I was a changed woman! Whilst it was working for me, even my finger joints which kept dislocating and were, apparently damaged due to joint erosion, improved dramatically, and, for most of these 5 years, I would not have known that I had RA at all. In fact I genuinely wondered whether it had actually gone completely. Sadly that is not the case and I am probably about to start on my third anti-tnf, having also now been allergic to Humira (which did work for me, but not as well as Infliximab).

In terms of the infusion, when I first started it took about 3 hours and then I had to wait half an hour afterwards to check that I was ok. After a while they were able to infuse it more quickly - about 2 hours if I remember correctly. But it was quite pleasant sitting chatting to the other peeps and usually drinking tea and eating nice biccys.

I really, really hope it woks for your Iris. I would go back on it tomorrow if they would let me.

Will be thinking of you on Thursday.

Lots love Tilly x

dorcas

Thanks Tilly

that was really helpful.

It must have been so hard for you when you had to stop the infliximab with having had such a great response to it until the allergic reaction.
That's the trouble with these highly cultured drugs.... reactions can be an unpredictable phenomenon. I had an allergic reaction to Enbrel which had shown great promise in controlling the PA.... and then had to stop the Humira (after 5yrs) as I produced antibodies that stopped it working. It slowed down the progress of my PA but wasn't exactly a 'wonder drug' for me. We are all so different!

Do you know when/ what anti tnf you'll be on next? there are some new ones..tocilizumab and certolizumab...but these are not available for PA peeps in Scotland (maybe certolizumab will be soon though) so I have no other options beyond the Infliximab.

It's useful to know how long it takes to be infused..I'll be sure to take a book ..or my netbook with me. . It would be just wonderful if infliximab halted arther's relentless progress...walking is so painfully difficult now and my neck is causing me such problems :roll: but I guess that's the reason we are getting these drugs in the first place!.

Fingers xed for great things for you Tilly when you start your next ant tnf.

Iris x

dreamdaisy

The best day of my life (regarding the arthritis) was 21st June 2005. My first infliximab infusion. I staggered in on two sticks, 4 1/2 hours later left on none. I should have known that was too good to last. By the second week of July I was back on the crutches and by mid August I had stopped responding altogether. Fun while it lasted tho. I really hope it works out far better for you dorcas - I want you to be a tillytop! DD

ironic

Just wanted to wish you all the luck in the world for Thursday.

Love to Wally too

Ix

skezier

Hi Iris,

Hope will be i her best dress and I will try and look half decent...... We will be with you and I hope you know that!

I so hope Tilly and DD have made you feel better about it? Its a good drug they say and well fingers crossed and take you netbook if you can cus its so boring... oh and take your mobile as well Love and ((((( ))))) Cris who is off to be RVW xx

dreamdaisy

You know, I had completely forgotten about the time issue? DUH. The first one was done quite slowly in order for them to monitor me, so that took about 2 1/2 hours. I then had to wait for a while to check I didn't have any reaction to it. It is lovely, you just sit there (they have recliners in our unit) plumbed in to the stuff, but you can chat to people, read a book, listen to your headphones, and as tilly says have tea and bickies. I took bickies in on my subsequent infusions, only polite! The first two were quite close together, then they started to spread them out. I managed four altogether, I think, before it stopped working. Bloody cat proteins - I should have born a mouse. DD

dorcas

Thanks Cris, Lynn, Ironic and Damsel.

I'm looking forward to starting this drug and am trying not to build up my hopes too much that it will be effective .....and......that it will last. :!:

Can't imagine having such an immediate benefit...I'll be limping in on just the one stick DD so will report back on whether I do/ don't have that quick a response too. (maybe I should take in some cheese for the mousey mab bit of the treatment ha ha!)

I read what you were saying DD on Janie's rituximab thread and it really struck a chord with me....it IS handling the 'hope' that's the hardest. (wise words damsel )

I do have a sense of inward desperation about this 3rd anti tnf 'working' cause I've already been told by rheummy that they're running out of ideas now on how to control the PA......

anyway, thanks peeps for all you words of support.

Ix.Wally says 'Hi' and to tell you he's started driving now.

shiningstar

Hi Dorcas

Sending you my best wishes and hope that you get a great response from the infusion. I think we build up our hopes for every new drug we try and it is so difficult to deal with when we do not respond as we hoped ...we are all looking for a cure ...but there isn't one!
There have been some great responses to this drug though and I really hope that youare one of the lucky ones some people have been helped for yearsand years on the Anti TNFs and new drugs are being developed all the time....try and remain positive it always helps.
Will be thinking of you

Love SS

skezier

Hi Iris,

The hope thing is always the worse bit but these infusions do seem to be good...... I do honestly bump into a lot of people who have them and I honestly have never heard someone say they don't do some good.

Shall be there and Hope is getting ready for the shotgun thing

Hey just got a docs appointment and will see if she can help at all..... yesterday wasn't right! ((((( ))))) and some poached eggs on toast Cris xx

julie47

Hi Iris

As with all new Ideas the docs present us with, we are willing to try.

You will be excited about your new treatment . I would be too.

You never know this could be the one for you. (OH knows a man on it and he is doing great)

Fingers (if I could) crossed for you. good luck

julie pf xx

dorcas

Hi SS and thanks for the good wishes

I am generally very positive and will be carrying that thought with me on Thursday. perhaps it's best to take it as it comes rather than predict whether it will/ won't work and for how long...but I guess that's all part of preparing for anything new. :?: especially when there's a lot riding on it..so to speak.

Hi Cris..... so glad you got that appointment and that you are up and dressed..all in the correct order
seriously though it is very good news and we will all be breathing a big sigh of relief when you see the doc and get those bloods checked.

Thanks for the poached eggs n toast....free range too.....extra yummy

Ruby disgraced herself this morning by eating one of my xpensive easy fasten black shoes
this is how she looks on the outside
but really she's like this
on the inside!

I now have only one pair of shoes that fit ...and they are green (why did I ever buy green shoes that don't match anything :roll: )

Iris xxx

Thanks PF didn't see you there! I am excited about it and have been waiting since March to get started :!:

arther hands are so painful Julie...have you tried hot wax treatment? it is very soothing....I been using it for a year now. x

tillytop

Hi Iris, glad to have been helpful - and thanks for the good wishes. As you say everyone reacts differently to these drugs but really, really hoping that Infliximab works for you. I was desperate when I had to stop the Infliximab but was lucky that I went onto Humira almost straight away. But the Humira turned out to be an absolute nightmare so I am on a bit of a drug break for the moment (only pred and nsaids). Both Enbrel and Rituximab have been mentioned to me as possible future options but not really sure at the moment what to do. Have appt at anti-tnf clinic end of this month so have to get my head round it a bit before then. Will be in your pocket on Thursday! Love Tilly x

marion1952

Hi Iris

I'm really really keeping my fingers crossed for a good result for you on Thursday...

and I really love your labrador and devil pictures!!

Marion xx

Wonkylegs

HI Iris,

I'll be looking at your thread with interest, and if you don't mind I'll be hiding in your pocket and taking notes so that I know what I'm in for when (if?) they get me started on the infliximab.

all the best for THursday

hugs
Wonky

dorcas

Hi Tilly, Marion and Wonky

thanks for your positive messages.

Tilly.... Will you have to choose between Enbrel and Rituximab?
Set me wondering how the rheummys decide on which drug to use and when, especially as different 'classes' of anti tnf's target different cells so presumably work quite differently. Also, just to complicate further, some are classified as anti tnfs but others are biologics.....confusing isn't it:?

They seem to be limited to using Enbrel, Humira and Infliximab for PA peeps (at least in the hossie I attend) which all target the same cells.

Anyway Tilly.....best of luck for you when you get started.

Marion.... thanks again for your good wishes.

Ruby is just like the those pics! She looks so sweet...never looks guilty no matter what...but inside lurks the heart of a devil!! Jakey boy on the other hand always looks so guilty even when it's obvious it was the she devil's destructive work and not him....poor boy...I think it's to do with his early start...three homes before I got him as a rescue at only 8ths has made him insecure.

Wonky...I'll be wearing my jacket with huge pockets so's you can take your notebook in
Do you know if/ when they'll decide about starting you on Infliximab? Have you been on any others?

Here's hoping that all of us starting on new drugs have a good result. Janey...my fingers are crossed for you for Thursday too.

iris x

shiningstar

Hi Iris
Have been thinking about this and just wanted to say that it would be great if you could carry on telling us all about your experience with the infusions. Down the line somewhere for most of us is probably treatment with Anti TNF and you can learn so much from other peoles experiences , particluarly as they happen and not after the event when the memory has faded a bit .... So I for one will be waiting for your post on Thursday after you have been so we can all share your experience with you (if that's ok with you) .
Wishing you all the luck in the world ... After all if it works for you it leaves us all with hope for the future.
Love Shining Star

dreamdaisy

I loved having the infusions. They were an absolute doddle. Pitch up, get plumbed in, then sit and read, or chat, swig tea and eat bickies. Smashing. Much better than blasted injections. During my last infusion (tho I didn't know it at the time) I was chatting to a man whose daughter was a research scientist at Cambridge, working on a project to try and put infliximab into tablet form, to ease costs and administration of said stuff. I guess she didn't manage to do it. Shame. DD

dorcas

Hi SS

I will be sure to let you know how the treatment goes. I know what you mean about memory fading with time...and for me that can be quite a short time.

I missed an important appointment last week (sitting twiddling my thumbs when I was supposed to be at post op hand therapy) and muddled up another appointment (rescued at the last minute) :roll:

I have to phone the ward tomorrow morn to let them know I am well and don't have any infections before going on Thursday..

Thanks for being so positive and supportive...I really appreciate it

Iris xx

Hi damsel
didn't see you there. :!: tea and biccies...relaxing on a padded chair...I might not want to come back home

wish though that you had been able to continue on the Inflix. when it had been so effective for you :roll:

irisx

chris7

Hi Iris

Just adding some more hugs, good wishes and hope all goes well for you on Thursday. I can't add any advise on any of this but I will be in your pocket with the others to add my support. Mind you as it is duvet day, I might nod off in there!! Hope that is ok? Good to see Wally is driving. Well done Wally.
take care
love and ((((( ))))
Chris x

Wonkylegs

dorcas wrote:

Wonky...I'll be wearing my jacket with huge pockets so's you can take your notebook in

thanks for that will have my pencil at the ready

dorcas wrote:

Do you know if/ when they'll decide about starting you on Infliximab? Have you been on any others?

no really clear idea ..... but I do have an appointment with the new rheumy consultant early in Sept, so hopefully some answers then, at least about the x-rays and the TB screening if nothing else.

there's always something I'm waiting for at the mo ... .then other things get in the way. HOpefully we can get things sorted sooner rather than later.

This will be my first foray into anti-tnf therapy - I was given the choice of which one to go for .... and then they took that choice away from me because I won't do my own MTX injections so they won't let me have either Enbrel or Humira until I show that I am willing to do the injections ........ that's a whole other ball game and well I am hoping that the infusion will work, otherwise I am going to be made to confront the issue of doing my own injections even though the surgery are fine with my going there each week.

apparently it is the rheumy nurses job to give me back my independence. Even if I don't want it!

hugs
WOnky

dorcas

For heaven's sake Wonky :roll: why are they insisting on you doing your own Mtx injections?....lots of peeps here don't.

It's not a matter of 'keeping you independent'...that's just so much twaddle. :shock:

some folks just can't get over the psychological barrier of sticking a needle into themselves.....and that should be respected not used as some 'bribe' to starting anti tnf. :x sorry Wonky I am so mad on your behalf!!!

Hope you do get a better consultation in September...will keep my fingers crossed for you.

I am going in to hospital tomorrow at 10am until 3pm (ish)...so your company will be most welcome! watch you don't stick that pencil in me.

iris x

janie68

Iris

Just wanted to say again Good luck for tomorrow. It'll be alright I'm sure. I'll already be in for your 10-3, I've got to be there at 8.30 as it's all day. Gulp! Let's hope that lunch is up to our standards!! :P

Might see you on here over the weekend and we can compare notes...

Janie xx

dreamdaisy

Good luck for tomorrow, dorcas. It will be absolutely fine. We'll be scattered about your person, swigging tea, nibbling biscuits, downing fizz and savouring strawberries. DD

marion1952

I'll be thinking about you tomorrow Iris and hope it all goes well.

Marion x

tillytop

Just popping in again to wish you the best of luck with your first Infliximab infusion tomorrow Iris. Will be thinking of you and hoping it works as well for you as it did for me. Love Tilly x