Kickas.org Forums Treatments, Drugs and Alternatives Anti TNF and other biological medications Infliximab story

Hi All,

I've only just cmoe across this forum, and already found it very informative, particularly the nutritional aspects. Anyway, I thought I'd post my current experience with AS and infliximab.

Everything started when I was 19, on the back of getting repeated iritis I was given blood tests and back x-rays, and was told that they were checking for AS. After a while I was told all was fine, and at the time the cloud completely lifted and I was very happy to have been given the all clear.

Fast forward to when I was 23. For a few days I had been getting pain in my groin, something I attributed to an old groin strain that occasionally played up. I didn't think much of it until it started getting worse. It was in my right hip and it was really starting to slow me down. At the same time my right shoulder started playing up, then my left wrist, followed by my left ankle, lower back and left hip. Within about 2 weeks I went from being totally fine to a complete mess, culminating in me not being able to get out of bed.

I've always been the type to shrug off aches and pains, so it was only at this point a few weeks in that I went to see my GP. Straight away I was put on diclofenac, and was told I would be refered to a rheumatologist regarding potential AS, following my positive test result for HLA-B27 back when I was 19.

Now this annoyed me intently, as I was never told I was HLA-B27 positive, despite numerous visits to the eye clinic with iritis. I feel that had I ben better for-warned, I could have made some choices that would have benefited me.

Anyway, knowing the NHS system for what it is, I went private the next day, and had an MRI confirming AS within the week. My head went to pot and all manner of crazy thoughts went through it.

Things went quite quickly from here, as I learned about a local trial for Infliximab in Chappel Allerton Hospital, under professor Emery. I went along for evaluation, and was deemed a suitable candidate. By the time I went in to start it, I was about 3 months into my AS onset.

In this time it had already had quite a dramatic effect on me - the NSAIDs weren't useless, but weren't particularly great - my left wrist was so dlicate that I literally couldn't use my left hand for 2 months, and my left forearm wilted away (at the time I was going to the gym regularly, and was of decent build). It was only when I noticed this in the toilet mirror at work I really started panicking as to what may happen.

I stated the trial, and as it was a double blind crossover, I had no idea if I was going to get the infliximab or not, so I went in with mixed emotions. The tests and infusion went well, and I went home in hope that I would be on the drug rather than placebo (although if I hadn't been on the drug, I would have been offered it anyway at the end of the trial, so not a complete loss).

The results were quite simply amazing - literally the next day I felt 80-90% (from about 5-10% the day before), the following day I was completely pain free! I was amazed and overjoyed to say the very least! I continued going to the trial and had my other infusions, and everything stayed the same - I seemed to have been put into firm remission.

I was told it was very unusual to have caught my AS so early on and started on such a treatment, and they were unsure of how I would react, and whether it may even knock it out completely.

Now I'm 25, and am just starting to get pain again, having been completely free of pain, and not on medication for around 2 years. Reluctantly I started up on Diclofenac again, and was shocked to find out I had missed 2 follow up appointments for the study - as I had moved house. I've got another appointment in January, so will see what happens from there.

For now, pain has only really come back in my lower back, the very base of my spine is the worst, but I can only really call it moderate compared to what I had before. There was some in my right hip, but this has gone again now thank god! (I really hated the hip pain more than any other joint)

Having found this site I've started looking at my diet again. on my original diagnosis I had intolerance testing done, and didtched a lot of foods - I was basically just eating protein sources and salads for a couple of months! I had read a little about the klebsellia (sp??) connection, but not much, and as soon as I got on the trial, all other interventions did seem a bit of a waste of time!

I'm pretty [**BLEEP**] annoyed I didn't find a resource like this site back then though, as I would have started a daily enzyme and probiotic regime there and then!! I work in the health food industry, so get my supplements as a perk of the job...!

Having read on here about people's results avoiding starches and trying to sort their gut function, I've cut down on my starches (thohg not complete avoidance yet), I'm taking enzymes with every meal, and having a couple of (very) high strenth probitics a day.

So far I'm again very happy with the outcome - I'm off my NSAIDs, and only in very mild discomfort. I'd hope to be in a better way within a few weeks if this continues as it is.

So that's a big thanks already to the posters on this site for giving me new direction and a place to come to try and understand more about what I have!

Well, I think that's probably more than enough as an introductory post - I hope some find it as useful as I have their information.

Cheers,

Tony

HI TONY!!!!!!

the world is getting smaller by the day,
realy glad you found this site.

I saw professor emery six weeks ago, nice bloke gets strait to the piont, will see him again in a couple of months.
I have just finished a trial called (rapsody) its an open study of humira wich means everyone gets the proper stuff with no placebo, may be worth asking when you go if there are eny places left on the study. if not ask about eny other tials coming up as you know they have a research ward and lots of studys coming and going.
He may even give you an anti tnf on the nhs a lucky few are starting to get them now and about time too.

all the best tone..............

Nice one, thanks for the info - I can go in a with a bit more of a game plan now!!

I'm quite happy to get trounced with immunity modifying things - mine has always been a bit on the tough side (never had a day off sick) so can take a bit of a kicking before I need to worry... I think..!

I'm wary the NHS will tell me where to go when it comes to anti-tnf on the tick - I could only really describe my problems as moderate at the minute, certainly nothing like they were previously. It does annoy me though, as I'd much rather a proper preventative measure against damage like this, rather than trying to clean up the damage later on...

Anyway, that's another grumble for another thread!

Cheers,

Tony

Your story gives me a lot of hope!! I heard that there is no real cure for AS, so even if you go into remission, there is no telling when it will come back.

Anyhow, i enjoyed your story (especially the BLEEPS). lol.
Hope you find some relief soon!!

Tony,

Why you stop Remicade treatment?

Alex

I was part of a study into it's effects on early AS - my participation entitled me to 4 infusions, after which, that was it

Trust me, I'd of kept on it given the choice!

At the follow up I've got scheduled for Jan, I'm going to ask more about what can be done in this area - to my knowledge, infliximab isn't just handed out willy nilly, and I'd probably need to be in a lot more pain.

Blu, Mig's brother went into remission and it has lasted-so there is hope...

Actually, Tony, to be approved (for Enbrel or Remicade) in Ontario by the Trillium provincial drug plan, I had to have failed 3 N-SAIDs and been Dx'd with Bilateral Sacroiliitis. I have this Dx from my SI's x-rays, and I don't always have pain, occasionally I have no pain, when I'm not in an active flare. This flare has been ongoing since Labour Day weekend-enough already...

Don't lose hope...

I believe that the high bar conditions they lay out in order to get Anti-TNF is only because it is so expensive. We can expect these drugs to become more widely spread and therefor cheaper, so that the bar will be lower, I think.

I think the expense in the UK is the main barrier I'll have to overcome..!!

When I was entering te study, I had to have a sufficient BATH index to qualify - I nearly wasn't allowed to enter as I couldn't state that exercising improved my mobility - at the time it was physically impossible for me to exercise.....

I'll be asking as much as I can when I go in - having just read about dragonslayer on here, I think it's fair to say that I should have the right to any preventative measures that are available for me, as the consequences over time can be so drastic - after all, I do pay my taxes and national insurance every month!!!

Overcomer - sorry for my ignorance (!!), but what is Dx'd?? Also, I'm not familiar with american holidays, but I hope things calm down soon

Hope-wise, just finding a resource like this has really changed my perspective - it helps to be able to see how others deal with and cope with this, and to be honest, I'm quite upbeat about things at the minute!