Changing from Infliximab to Humira

[Lol52]

Hi this is my first post and I am due to start Humira after being on Infliximab for 6 years because Infliximab is no longer working for me.
I am worried because I can't find the answer to my question which is : Am I likely to have a reaction to Humira as I did with the 3rd Infliximab infusion. It was really frightening, i was on a very small dosage at the start 10mls per hour and suddenly I felt sick and everyone came running I was having breathing difficulties, sick and red all over (Hives) I was given Piroton + steroid + anti sickness and I got through it. So before all subsequent infusions I have had to have above meds before starting. So I'd really like to know if anyone else has had this this will happen when on Humira. Thanks all Lol

 

[CrohnsHobo]

I went from Remicade to Humira, but I never had a reaction to Remicade and nothing to Humira. If you had such a strong reaction before I would make sure you discuss it with the nurses/your doctor before starting.

 

[Crohn's 35]

Ok now I can tell my horror story seeing as it was put on here first. I was on Remicade and by the third infusion I was taken to emerg, I couldnt move my arms, and was in so much pain. A neighbour and paramedic had to put my coat on, and it was -25c below that night. I got to emerg, and they gave me Demoral for the pain and didnt touch it. They said it was likely a reaction to Remicade.

I had to call my husband's company from the mines so they could fly him out, because the pain killer was wearing off and I couldnt get out of bed. After the call I dropped the phone and I was scared and in so much pain. Thank God my husband got home and for 3 days, he had to help me walk and wipe my butt and I couldnt move my arms at all. 2 Percs every 4 hours and the doctor said NO, only every 6 and I said then you come and help me get to the bathroom.

A week later, it went into my foot and went purple and thank goodness I had crutches and my arms were getting better cause I couldnt walk. Needless to say my doc mentioned Humira and I said no.

I waited a year and was on Humira and since it is a human protein rather than mouse, it was great, no pain, did the shots myself , way more convient but it petered out. Cimzia isnt here yet so, I wished Humira worked because it was alot easier!
Try the Humira, it will be fine, and so sorry to scare everyone but this is the truth whether you want to know or not.

BTW Welcome to the forum!!!

 

[Peaches]

Holy crap Pen!! I didn't know it was that bad!!! I have never had anything like that happen in the 6 years I have been on Remicade (thank God!!).

:welcome: Lol52!! Sorry - got distracted there I am not completely sure about this, but logic would say that if you are able to give the medication to yourself without the supervision of a nurse etc - I would *think* the possibility for having an acute reaction like we could have with Remicade would not be there. BUT...I would certainly do what CH says and ASK your doc or nurse to make sure. If I ever have to switch, I am going to make sure I have Benadryl on hand....just...in...case.

 

[Crohn's 35]

I hate to scare people of that story, it scared me too!! But that is the ugly truth.

 

[Mountaingem]

Thanks Pen for sharing-sorry you had to go through that! It's bad enough to have Crohn's and then that happens!

 

[Crohn's 35]

It is like I say everyone is different to reactions and lengths of time for meds to help. I always say you have to pick your poison, long life of pain and no life or taking some risks along the way. I pick which ever will help. My husband thinks sooner or later your body becomes acustomed to your disease and you have to trick it and change your meds.

 

[sam]

Just know that once you stop Remicade, you cannot go back on because your body will reject. Symptoms at the time of Remicade is important to track and report. Diluting or slowing down the drip can eleviate alot of these symptoms from returning. Try these with your doctor before stopping all together.

 

[Lol52]

Re changing Infliximab to Humira

Hi all,
I'm from London uk but staying in France until Sept 10 so will have meds here and I will make sure I tell the docs.
I was looking at where you are all from and was surprised to see, Pen, that you were having Infliximab at home,is that the normal routine? Sorry about your awful reaction you must have been so frightened and you are right not everyone has the same response.
As soon as they gave me anthihistamine I was fine and I'd been so good Crohn's wise for the previous 3 months I wanted to persevere.

Sam, your suggestion 'start the meds slowly,' this occurred 6 years ago when Inflx had first started to be used in the UK and the protocol for all was to start V slowly 10 ml per hour and I reacted after 20 mins! But on the plus been very well until this year .
I am new to this so hope that this reply gets to you all.
Thank you all for your support I'll let you know how it goes when I have it in March.
Lol X

Crohn's 33 years
4 resections
2 adhesions removed
Rectal surgery
loads of diff drugs mostly Pred and Azathyoprine
Now know that steroids do not help me.

Primary Schlerosing 6 years
Meds Ursodoxycolic acid

 

[Lol52]

Hi all,
I'm from London uk but staying in France until Sept 10 so will have meds here and I will make sure I tell the docs.
I was looking at where you are all from and was surprised to see, Pen, that you were having Infliximab at home,is that the normal routine? Sorry about your awful reaction you must have been so frightened and you are right not everyone has the same response.
As soon as they gave me anthihistamine I was fine and I'd been so good Crohn's wise for the previous 3 months I wanted to persevere.

Sam, your suggestion 'start the meds slowly,' this occurred 6 years ago when Inflx had first started to be used in the UK and the protocol for all was to start V slowly 10 ml per hour and I reacted after 20 mins! But on the plus been very well until this year .
I am new to this so hope that this reply gets to you all.
Thank you all for your support I'll let you know how it goes when I have it in March.
Lol X

Crohn's 33 years
4 resections
2 adhesions removed
Rectal surgery
loads of diff drugs mostly Pred and Azathyoprine
Now know that steroids do not help me.

Primary Schlerosing 6 years
Meds Ursodoxycolic acid

 

[Crohn's 35]

Sorry if I confused you , Remicade (Inflixamab) was done by IV in a clinic, only the Humira was done at home. Yeah the reaction was pretty scary so I was reluctant to even try Humira. I do believe some people no matter what drugs you are on they peter out and you have to change about. I have changed and mixed different meds alot in 18 years.

 

[Lol52]

Re changing Infliximab to Humira

Re changing Infliximab to Humira
Sorry for delay in replying, being new to this I couldn't find out how!
Hi all,
I'm from London uk but staying in France until Sept 10 so will have meds here and I will make sure I tell the docs.
I was looking at where you are all from, Pen, were having Infliximab at home , is that the normal routine? Sorry about your awful reaction you must have been so frightened and you are right not everyone has the same response.
As soon as they gave me anthihistamine I was fine and I'd been well re Crohn's for the previous 3 months I wanted to persevere.

Sam, your suggestion 'start the meds slowly,' this occurred 6 years ago when Inflx had first started to be used in the UK and the protocol for all was to start V slowly 10 ml per hour and I reacted after 20 mins! But on the plus been very well until this year .
I am new to this so hope that this reply gets to you all.
Thank you all for your support I'll let you know how it goes when I have it in March.
Lol X

Crohn's 33 years
4 resections
2 adhesions removed
Rectal surgery
Fistula
loads of diff drugs mostly Pred and Azathyoprine
Now know that steroids do not help me.

Primary Schlerosing 6 years
Meds Ursodoxycolic acid