infliximab failed...

rachael86

i dont mean to bore anyone but am just wondering if anyone else has had a similar experience or could offer any advice...
i started infliximab infusions in june and was doing fine. according to my bloods it was doing wonders but i didnt feel any positive effects (which i kind of expected).
i started having the worst flare-up ive had in 3 years in october, but put it down to it bein time for one (as weather doesnt normally make a difference to my condition).
then, about 5-10 mins into my fifth infusion i had a "funny turn". i was getting palpatations and my breathing went strange (as if i had something stuck in my throat and could only get the tiniest amount of air in). they stopped the drip and it passed immediately. i was seen by a doctor and after asking the usual questions like if it was possible i had any infection, had been unwell or had been stressed or anxious recently (i answered no to all) she gave me the "all clear" and they re-started the drip. i was absolutely fine.
8 weeks later i went back for my sixth infusion. they started it and about 1 min later i found myself totally unable to breathe and felt like my face and hands were on fire. the nurses sat me up and gave me oxygen and proceeded to tell me that my face and hands were twice their original size and i was "grey". i then started to vomit and got extremely worried when i saw blood in the dish.
the next thing i remember is waking up 4 and 1/2 hours later. the doctors told me i had stopped breathing and was rushed to a&e to be rescusitated after the nurses in the day care unit were unable to do so.
now, anyone with medical knowledge would probably say this was an allergic reaction or anaphalactic shock, but according to all the professionals who saw me it was neither. suffice to say i am no longer on infliximab and they have no idea what caused the "reaction" so they dont know what route to take on further medication.
im so confused and anxious at the moment, but more so angry and frustrated because its took me 7 years to get this far and now im back to square 1.
apparantly im "one of the awkward ones..."

jimmy77

rachael86 wrote:

i dont mean to bore anyone but am just wondering if anyone else has had a similar experience or could offer any advice...
i started infliximab infusions in june and was doing fine. according to my bloods it was doing wonders but i didnt feel any positive effects (which i kind of expected).
i started having the worst flare-up ive had in 3 years in october, but put it down to it bein time for one (as weather doesnt normally make a difference to my condition).
then, about 5-10 mins into my fifth infusion i had a "funny turn". i was getting palpatations and my breathing went strange (as if i had something stuck in my throat and could only get the tiniest amount of air in). they stopped the drip and it passed immediately. i was seen by a doctor and after asking the usual questions like if it was possible i had any infection, had been unwell or had been stressed or anxious recently (i answered no to all) she gave me the "all clear" and they re-started the drip. i was absolutely fine.
8 weeks later i went back for my sixth infusion. they started it and about 1 min later i found myself totally unable to breathe and felt like my face and hands were on fire. the nurses sat me up and gave me oxygen and proceeded to tell me that my face and hands were twice their original size and i was "grey". i then started to vomit and got extremely worried when i saw blood in the dish.
the next thing i remember is waking up 4 and 1/2 hours later. the doctors told me i had stopped breathing and was rushed to a&e to be rescusitated after the nurses in the day care unit were unable to do so.
now, anyone with medical knowledge would probably say this was an allergic reaction or anaphalactic shock, but according to all the professionals who saw me it was neither. suffice to say i am no longer on infliximab and they have no idea what caused the "reaction" so they dont know what route to take on further medication.
im so confused and anxious at the moment, but more so angry and frustrated because its took me 7 years to get this far and now im back to square 1.
apparantly im "one of the awkward ones..."

Hi,

Just an awful ordeal you went thru.Thanks for sharing this experience with high risk bio drugs. Glad you made it alright. There wil be something else that comes along that will work for you. Hang in there. I suspect there are alot of awkward ones, as you call it, that are allergic to this drug as well as many of the other meds.

jimmy77

purplecats

hiya, In October I had a very similar reaction to infliximab, I couldn't breathe and my chest was racing. I got told that i had built up anti bodies to the drug so it wasn't a full on allergic reaction, it was just my body going nuts because it thought it was there to cause damage. I think it's because it contains mouse DNA so there is an increased chance of us developing anti bodies to it.
Was you on methotrexate with it? I was because it is meant to reduce the chances of that happening in the first place.

I had also tried Humira before going onto infliximab so my consultant has now put me on Rituximab which I have had my course of treatment and won't need another one for hopefully a year.

Have you had chance to speak to your consultant about where he is planning on going with your treatment now? It took me about a month to see my consultant after the reaction.

Us awkward cases need to stick together It's good to give the consultants a complex case rather than letting them take it easy,

Emma

frogmorton

Oooh!
That sounded awful :!: :shock:
Poor you.
It's good that you are ok now
I too thank you for letting us know this can happen (and in fact to two of you) incase any of us is ever in this position.
I'm with Jimmy - there WILL be soimething else out there for you.
You take care
Toni x

ktl297

That sounds like an awful experience! I used to have infliximab and I didn't have any reactions to it but after a while it stopped working as well - I was only allowed the infusions every 8 weeks and it only worked for about 3 weeks after I had it so I was very upset and felt despondant and was very confused. But my wonderful Consultant allowed me to swich to enbrel (which I had reactions to) and then to humira (which works OK). Don't give up - there are other options! By the way infliximab is more likely than others to give a reaction as it contains proteins derived from mice which is why it is usually prescribed with methotrexate (which lessens your body's immune reaction to it). I hope you get something sorted... KT