Infiximab

[buster]

infiximab

my daughter aged 20 is due her 1st infushon for infiximab on 10th august an i wish it was me having it rather than her she is fine with it an looking forward to new treatment..... as a mum ive researched to much into it an now fed up with seeing an hearing all the bad sides to this drug i so wish i never looked on the internet im having sleepness nights with worry can anyone on here tell me or reassure me about this medication i would love to hear something possitive that can take this worry away from me

 

[Lydia]

I have been on it over a year now with minimal side effects. I get some sore joints for a day or 2 after. I get some break through crohn's symptoms here and there, but I have a pretty normal life for the most part.

A thing to keep in mind is that people generally dont post how well they are doing on the internet. Most people are on forums because they dont feel well. So you may hear the bad stories without know how many good stories there are.

 

[Jessi]

Feelin' fine!

I have had two infusions so far, Buster, and I feel pretty darn good. I have normal BMs, once to three times a day. No blood. No diarrhea. No urgency. No mucous. I speak to a lot of happy people at the infusion center. Many people are exhausted and sleep for a few days afterwards. I felt very tired and had lower abdominal cramping on the first and second days after the infusions, but after that, was good to go! These things are the most common side effects. Hang in there, and be strong. Your 20 year old will probably be feeling strong too by mid August. :thumleft:

~Jessi

 

[davidr]

I've been on it for nearly 3 years now, and while the list of potential side effects does worry me, I haven't experienced any of them yet. Either way, when I think about the improvement to my quality of life, I would definitely say that it's worth the risk.

 

[Starlight]

I have been on it for 4 1/2 years and don't have to many side effects. When I first started, I got headaches and was drained for a couple days after. Now. Don't even get headaches. I do feel drained, expecially the day of the infusion, and sometimes a little tired a couple of days after. Every once it a while, I'll get pain I'm my legs on the da of my infusion( like later in the evening hours after) I'm not really sure if its joint pain or not, it basically just feels like sore muscles from a hard workout. Best way I can describe it, but is not bad at all.

Maybe, the day of her first infusion, don't plan to much. For some people, I hear it gives them. Boost of energy. For others, like me, it just drains you. So until you know how she will handle it, maybe just plan to take it easy that day, or even a day or to after. I hope this medicine does great for her. It is a great drug, it has given me my life back. Don't freak out to much over the Internet stuff. It does sound overwhelming because you are reading all the side effects that can happen at once. Many people have very few side effects. Irs basically like reading one of those pamphlets you get when you get a new medicine filled. Even things like tylonal the can make seem like the most dangerous drug ever. Lol so try to stay calm and I wish you and your daughter the best of luck!

 

[Mackie78]

Hi,

I feel sorry for you having this on your mind as far as your daughter is concerned.

For what it is worth I have been on Infliximab for nearly 3 years and it has made a massive improvement to my quality of life. I have had no side effects at all.

I have three friends with Crohns (all diagnosed before me) and two of them have been put into full remission and have now been off the drug for 9 and 16-18 months respectively, with no relapses.

While it has not been that successful for me it has none the less helped improve the last 3 years.

Hope this helps to highlight the plus sides to Infliximab.

 

[buster]

re infiximab

i would just like to thankyou all so much for your kind an honest:ghug::ghug: replys...i can tell you i feel so much better knowing that you all have been on infiximab and it has worked well for you all...its nice to hear from people with the same conditions an treatment this is only the second relapse she has had in 9 years the aza kept her in remission....good luck to you all an the best of health to you all i think your all so amazingmy daughter only has a week left on the liquid diet an is feeling absolutely great so lets hope this new med puts her on the road to recovery so she can begin to feel well again..........

 

[BEACHLC]

I have been on remicade since november. I have not had the terrible side effects that are listed in the pamphlets. It did take awhile for me to feel somewhat normal again (around the 5th or 6th treatment) and I do think I am still healing. I was pretty bad off before I started remicade. I think the pharmaceutical companies list everthing bad they can think of to ward off lawsuits. I would feel secure about a family member starting remicade. For me it was the only thing that helped.

 

[buster]

beachlc thanks so much for your comment it means alot to hear such possitive things...today i showed my daughter all the replys from this site an she was so pleased to see that other people have done well on infiximab an she wants to wish you all good luck..im going to encourage her to join this site so she herself if the need be she can ask questions an get info on anything she is concerned about so she can talk to you all herself..her health has improved so much on the liquid diet she has so much energy now only 1 week left she said she is dreaming about hot food an her sence of smell is so strong she said even our dog food looks tasty!!! bless her.. she is a lead singer in a very successful band so her energy is very important so hopefully with this medication i was so worried about will hopefully over the months improve her health

 

[Joleen23]

Im 27 and just had my 1st infusion today (2nd due on the 9th Aug) It went really well and so far im feeling good