Hey everyone, I would really appreciate some help and advice.
I'll keep the story short as I feel I could write forever about my Crohn's story.
Basically, I've been living with Crohns for about 7 years now (diagnosed 5 years ago) and all this time I've been underweight, tried loads of different meds with no lasting effect.
After a long time, I finally start Infliximab treatment. My first dose was around May of this year. I was pre-medicated beforehand with hydrocortisone and something else, I can't remember exactly what it was, but I assume it was an allergy shot maybe.
The infusion was given to me over two hours which the nurses said was just to be safe which I was totally fine with. The only thing that I felt during the infusion was tiredness which quickly passed after about an hour and getting warm. no problem.
The exact same infusion procedure was followed again for my second dose. All was well. Felt the same things as before but was totally ok afterwards.
Third infusion comes up, again it was given the same way as before, pre-meds and 2 hour course. Everything goes well again.
Now I'm really starting to notice the benefits of Infliximab! I'm finally gaining weight for the first time in my life and have an appetite like there's no tomorrow! I love it. The highest I've ever weighed in my life (though I was still underweight, my BMI was very close to the normal range) Though I was still having some problems I never felt as good before in my life, I was beginning to gain much needed confidence.
Over the summer I had a job over in London at the Olympics (I live far away from London so got accommodation during Games time). My fourth or fifth (doh, cant remember exactly which one) infusion was due during my stay in London, they were fine with me returning home the day before my infusion and then going back to finish off work.
Here's the thing. My accommodation was an old Spanish cruise liner. It wasnt as good as it sounded trust me haha. Anyway after a week of living on the ship from hell, it turns out Legionnaires disease was detected in the water system. Apparently it was a minor case and the ship was deemed safe with no reports of anyone complaining of the symptoms. However stories were going around amongst the staff that there had been people who had it. That worried me no end with my compromised immune system. So after that I was very wary of showering and using the sinks/toilets. I spoke to some nurse on the phone at my hospital and informed them, and asked what to do. They said as long as its under control I should be OK. So on I went.
Anyway, 2 days before I was due to return home for my infusion, I developed a cold which is one of the symptoms of legionnaires Disease. After a long hard battle to get a train ticket home 2 days early, I get home and rest.
Worried I may have possibly got something more than a cold I told my hospital about the situation and we arranged for me to have a blood test before the infusion. I slept loads upon returning home and have to say the cold was quickly fading and I was starting to feel better.
Got to the hospital Wednesday normal and had a blood test. My blood test results came back and were satisfactory so the infusion could take place, even with a slight cold. The nurses were happy that I didn't have Legionnaires as I was getting better even though I wasn't specifically tested for it.
Now here's what depresses me. Because I had no serious reactions to my previous infusions it is procedure and deemed safe to give no pre-meds this time and to increase the time to 1 hour so it goes in a lot faster. I wasn't too confident knowing that's how it was going to be done this time, but I had no say in the matter.
Get the infusion going, 5 minutes in I have an Anaphalactic shock. It was the most frightening thing I've ever experienced in my life, all the nurses and even doctors who happened to be walking by rushed to my aid. After a few minutes they managed to stop the reaction, I was physically weak and lay down with my eyes shut for a while.
I was distraught when I finally recovered. Strange thing is though that the same exact thing happened to a person who was in the next bed to me. My mum got chatting to him and his family, and was told that the drug had no positive effect on him like it did me, he had the same reaction as me as well after having it infused with increased speed and no pre-meds.
The doctor said something along the lines of "maybe we should talk to pharmacy as this is the second time its happened today".
Anyway. I was unable to return to work and see out the games which really upset me. Was told by my doctor that he will never allow me to re-try Infliximab because of the reaction I had. Even though I said it might have been prevented if I was given pre-meds and a 2 hour infusion. He doesn't listen well and just dismissed my questions. I admit I am bitter about this as it was the first drug that ever worked (even if I wasn't 100%, I was getting there).
If the drug had not been working like it hadn't for that other person I wouldn't mind not ever having it again.
Fast forward to now and I'm now on week 15 of Humira injections once every 2 weeks. Humira has simply not been working at all for me, I've lost my weight I gained, no appetite, occasionally sick. I've gone back to my old self pre-infliximab. The doctor has now decided that I should be having 1 shot a week instead.
I have not taken it yet as I'm recovering from a big tooth extraction. Will start the 1 a week soon and am keeping faith its just what I need to start getting better again.
Good lord I have rambled on a bit. Sorry about that :ybatty:
So here's my questions. Has anyone here had an Anaphalactic shock to Infliximab (or any reaction), but gone on to try it again under different infusion circumstances (pre-meds and slower time)? Am I absolutely insane to want to try Infliximab again? Could it be possible that the cold I had contributed to my reaction? Or maybe the infliximab was a bad bag and the doctor was right to mention the pharmacy?
I feel that because I didn't get given pre-meds I had a serious reaction. Thats what the pre-meds are there for right? To reduce risks of a reaction. Also the 1 hour infusion time instead of 2 surely didn't help matters.
I believe it's all a conspiracy to do with the hospital wanting to save money and time.
I'm not giving up this easy on what has been the best medication in my life. I want to get a second opinion and will be looking to get a new Gastro specialist.
Thanks a lot for reading and anything you'd like to ask me or share your story and advice is appreciated
I'll keep the story short as I feel I could write forever about my Crohn's story.
Basically, I've been living with Crohns for about 7 years now (diagnosed 5 years ago) and all this time I've been underweight, tried loads of different meds with no lasting effect.
After a long time, I finally start Infliximab treatment. My first dose was around May of this year. I was pre-medicated beforehand with hydrocortisone and something else, I can't remember exactly what it was, but I assume it was an allergy shot maybe.
The infusion was given to me over two hours which the nurses said was just to be safe which I was totally fine with. The only thing that I felt during the infusion was tiredness which quickly passed after about an hour and getting warm. no problem.
The exact same infusion procedure was followed again for my second dose. All was well. Felt the same things as before but was totally ok afterwards.
Third infusion comes up, again it was given the same way as before, pre-meds and 2 hour course. Everything goes well again.
Now I'm really starting to notice the benefits of Infliximab! I'm finally gaining weight for the first time in my life and have an appetite like there's no tomorrow! I love it. The highest I've ever weighed in my life (though I was still underweight, my BMI was very close to the normal range) Though I was still having some problems I never felt as good before in my life, I was beginning to gain much needed confidence.
Over the summer I had a job over in London at the Olympics (I live far away from London so got accommodation during Games time). My fourth or fifth (doh, cant remember exactly which one) infusion was due during my stay in London, they were fine with me returning home the day before my infusion and then going back to finish off work.
Here's the thing. My accommodation was an old Spanish cruise liner. It wasnt as good as it sounded trust me haha. Anyway after a week of living on the ship from hell, it turns out Legionnaires disease was detected in the water system. Apparently it was a minor case and the ship was deemed safe with no reports of anyone complaining of the symptoms. However stories were going around amongst the staff that there had been people who had it. That worried me no end with my compromised immune system. So after that I was very wary of showering and using the sinks/toilets. I spoke to some nurse on the phone at my hospital and informed them, and asked what to do. They said as long as its under control I should be OK. So on I went.
Anyway, 2 days before I was due to return home for my infusion, I developed a cold which is one of the symptoms of legionnaires Disease. After a long hard battle to get a train ticket home 2 days early, I get home and rest.
Worried I may have possibly got something more than a cold I told my hospital about the situation and we arranged for me to have a blood test before the infusion. I slept loads upon returning home and have to say the cold was quickly fading and I was starting to feel better.
Got to the hospital Wednesday normal and had a blood test. My blood test results came back and were satisfactory so the infusion could take place, even with a slight cold. The nurses were happy that I didn't have Legionnaires as I was getting better even though I wasn't specifically tested for it.
Now here's what depresses me. Because I had no serious reactions to my previous infusions it is procedure and deemed safe to give no pre-meds this time and to increase the time to 1 hour so it goes in a lot faster. I wasn't too confident knowing that's how it was going to be done this time, but I had no say in the matter.
Get the infusion going, 5 minutes in I have an Anaphalactic shock. It was the most frightening thing I've ever experienced in my life, all the nurses and even doctors who happened to be walking by rushed to my aid. After a few minutes they managed to stop the reaction, I was physically weak and lay down with my eyes shut for a while.
I was distraught when I finally recovered. Strange thing is though that the same exact thing happened to a person who was in the next bed to me. My mum got chatting to him and his family, and was told that the drug had no positive effect on him like it did me, he had the same reaction as me as well after having it infused with increased speed and no pre-meds.
The doctor said something along the lines of "maybe we should talk to pharmacy as this is the second time its happened today".
Anyway. I was unable to return to work and see out the games which really upset me. Was told by my doctor that he will never allow me to re-try Infliximab because of the reaction I had. Even though I said it might have been prevented if I was given pre-meds and a 2 hour infusion. He doesn't listen well and just dismissed my questions. I admit I am bitter about this as it was the first drug that ever worked (even if I wasn't 100%, I was getting there).
If the drug had not been working like it hadn't for that other person I wouldn't mind not ever having it again.
Fast forward to now and I'm now on week 15 of Humira injections once every 2 weeks. Humira has simply not been working at all for me, I've lost my weight I gained, no appetite, occasionally sick. I've gone back to my old self pre-infliximab. The doctor has now decided that I should be having 1 shot a week instead.
I have not taken it yet as I'm recovering from a big tooth extraction. Will start the 1 a week soon and am keeping faith its just what I need to start getting better again.
Good lord I have rambled on a bit. Sorry about that :ybatty:
So here's my questions. Has anyone here had an Anaphalactic shock to Infliximab (or any reaction), but gone on to try it again under different infusion circumstances (pre-meds and slower time)? Am I absolutely insane to want to try Infliximab again? Could it be possible that the cold I had contributed to my reaction? Or maybe the infliximab was a bad bag and the doctor was right to mention the pharmacy?
I feel that because I didn't get given pre-meds I had a serious reaction. Thats what the pre-meds are there for right? To reduce risks of a reaction. Also the 1 hour infusion time instead of 2 surely didn't help matters.
I believe it's all a conspiracy to do with the hospital wanting to save money and time.
I'm not giving up this easy on what has been the best medication in my life. I want to get a second opinion and will be looking to get a new Gastro specialist.
Thanks a lot for reading and anything you'd like to ask me or share your story and advice is appreciated
