Infliximab/Remicade Advice Please

[Donna B]

Hey all,
I'm due to start on infliximab in the next few weeks- it's now my only hope, I'm allergic to azathioprine and 6mp and methotrexate was innefective. I've got severe inflammation and ulceration in the terminal ileum but there's no narrowing, yet.
I've done loads of research into the treatment and as I'm a nurse been able to access lots of extra info/ research. Thing is tho I'd really like to hear the truth from folks with experience of the drug.
I'm so ill just now that I have to start it and really need it to be effective, it would just be nice to know what to really expect.
Thanks All!!

 

[soupdragon69]

Hi Donna,

Good to see you found us. I havent been around alot in recent months due to moving, new job etc so welcome!

My crohns is mainly terminal ileum and have been on infliximab for 3yrs this May! Cant believe it - where has the time gone??

Have been down a similar route to you only the MTX was for my arthritis and crohns but didnt help and it impacted on my LFT's.

Am a nurse also and changed from a cardiothoracic critical care area to community GP triaging in recent months. Both jobs I love and found it very hard to leave the first as was involved in transplant and all sorts. The second/current job gives me autonomy but is much less demanding physically whilst very mentally challenging and thats exactly what I needed.

The inflix did scare me initially I have to say. Sometimes you find because you are a professional that you can read too much and dig alot more because every little thing niggles at you.

I have my inflix every 6wks and still go to my last hospital for it - 2hr drive - as dont want to lose security of them knowing me well if that makes sense?

I find I get a bit tired during it, sometimes a bit cold and my BP will drop slightly at times but all recovers. It takes me a few days to improve GI wise i.e infusion tues/wed and by sat/sun am tons better. Find the last 7-10 days my crohns plays up pre infusion.

Also took the third infusion before I started to feel like it was doing anything.

Everyone is different of course as you know yourself. I think its really just a case of listening to your body and giving it a go.

My gastro nurse commented to another patient when I was last in that there is no long term research as to what happens when you are on it long term side effects and benefits but having re thought everything through after hearing her say that, for me personally it has dramatically changed my life. So I will be sticking with infliximab for as long as I can.

My gastro cons commented he could change me over to Humira but he personally felt it wasnt as effective.

There are those here who will tell you it works really well for them and inflix didnt. So we are each an individual.

I know there are increased carcinoma risks with inflix but we have a slightly higher incidence with crohns if left untreated. For me I would rather have the inflix and a decent quality of life than never have tried it and perhaps be much worse off now...

Feel free to PM me any time. Will help where I can.

Let us know what you decide. Yes its scarey, but so are some of the other meds we have been on. We manage as best we can individually eh?

Thinking of you honey. ((hugs)) Hope what I have said makes sense and helps in some small way.

 

[Peaches]

Hi Donna! Soup as given some really good info. I have been on it for over 6 years and also feel that it has been a life changer for me. Having to tweak my dosage for the first time recently and dealing with a rash that is more than likely caused by it - but before all that happened - it has been really great for my disease.

I just wanted to add that you could take a look at the Remicade Club thread - should be some good reading there as well. Good luck and let us know what you decide!

Here is a link to the Remi thread:

http://www.crohnsforum.com/showthread.php?t=4544

 

[imisspopcorn]

:welcome: Donna....I too am a nurse. The risks of lymphoma did worry me a bit. The thing is, my quality of life was so poor, I really wasn't living. ...Sometimes the benefits just simply outweigh the risks.....

There is a 'Remicade Club' thread and a 'Humira Club' thread in the treatment section of the forum....Tons of info there...personal experiences with these meds, good and bad....

I'm glad you found the forum. This is a great place with a lot of supportive people.

 

[Donna B]

Thanks Ladies!!!!

:cheerss: Thanks for the words of advice, very much appreciated. I'm not so much worried about side effects, just wanted to hear about the human element as opposed to research facts and figures!!
I am going ahead with infliximab because I have to, been so unwell lately that even pred isn't helping and my GI has took me off it cos the side effects are outweighing amny benefits- I really need this to work.
Donna

 

[Fog Ducker]

All I can say is that it is amazing stuf and has saved my life!!
I hope it works as well for you!

 

[imisspopcorn]

Good luck Donna

 

[Brian]

Welcome Donna!
I'm fairly new to this whole experience. I had my first remi infusion last week. The actual process was a non-event for me....no trouble, no reaction, etc. (and I don't mind at all being forced to relax and read or whatever for 3 hours!). I haven't yet noticed anything pos. or neg. as a result.

My next date is scheduled Feb. 5. My GI doc wants me to start weaning off prednisone after that point. I've heard that it may take a few weeks for the remi to show positive affects, so I still have confidence that it will be the magic drug that keeps me stable for years +. I guess time will tell.

Good Luck!

 

[CrohnsHobo]

Hope it works for you! It was a great drug for me for about three years, felt great.

 

[acg101]

Remicade works Dont lose Hope

Hey all,
I'm due to start on infliximab in the next few weeks- it's now my only hope, I'm allergic to azathioprine and 6mp and methotrexate was innefective. I've got severe inflammation and ulceration in the terminal ileum but there's no narrowing, yet.
I've done loads of research into the treatment and as I'm a nurse been able to access lots of extra info/ research. Thing is tho I'd really like to hear the truth from folks with experience of the drug.
I'm so ill just now that I have to start it and really need it to be effective, it would just be nice to know what to really expect.
Thanks All!!

I have similar diagnosis with severe Crohn's in the decending colon. I have been on most meds you can think off and have used Remicade for 3 years, out of which 2 years I was in 90% remission. After 3 years I developed
acute sensitivity to the infliximab and I swiched to Cimzia which also started to work with great results.


Before remicade I was on flagyl/cipro/imuran combo and was in remission for 8 years!. I was relactunt about Remicade but chosing between surgery and in my case removing the colon I chose remicade which gave me 3 more years. of course there are side effects but if you are part of the 80% which responds to Remicade you will be happy.