Starting Infliximab

[james's mum]

Hi All
After stopping liquid diet first time 8 weeks this time 4 weeks, mouth ulcers, slight face swelling have returned after 1 day, spoke to GI yesterday and she said its time to start the Infliximab as well as stay on the Imuran.
We have read a lot about the drugs on the internet and have gain a lot of info from the forums, but is there anything new we should be aware of, questions or tests that should be done before he starts. Just really worried about him being on both these drugs.

 

[my little penguin]

All immunizations up to date
TB test
Check titers for chicken pox

 

[Jmrogers4]

MLP is right but I just wanted to say Good luck and I hope it does the trick

 

[Clash]

I would also talk with the GI about how long he plans on using the combo therapy. Alot of times GI's will only use the combo for 6 months or 1 year, if that is the case I would want to know what the plan was when that time frame was up if that is the model he is following.

Also, I wanted to send hugs and support. My son has been on the combo of Remicade and MTX(another immunosuppressant similar to Imuran) for a little over six months. Hope you are able to find some thing to get your son in remission quickly!

 

[james's mum]

James is to have his first treatment on Wednesday then 2 weeks after and then at 6 weeks. GI said should know by then if it is working or not.

Have any of your kids had any side effects after the treatments.

Here is hoping it goes ok.

 

[Tesscorm]

My son had his three loading doses and will be having his next infusion this week. So far, he's had no side effects from the treatments.

 

[momoftwinboys]

My son was on aza when he started Remicade. He stayed on the aza through the 3rd infusion. Apparently his GI likes to stop it after the second infusion, but no one mentioned to us to stop after the second infusion.
His main side affect has been being tired after the infusion (touch wood). I will add, the day after his first infusion, he said he had not felt that good in a long time.
Good Luck on Wednesday.

 

[james's mum]

Morning everyone,
James was to start the infliximab yesterday, but when I rang on Tuesday and asked about tests before he goes on it, they said "oh I think he has had them" don't bother to check just think. Well guess what he had not had them. So now have to wait for appointment for TB test and chest xray. Funny thing is the same thing happened with the tests that should have been done before he went on the Imuran.
Doctor's always seem to say don't read things on the internet it will only confuse you. But if we hadn't our son would be having these medications without the proper precautions being taken beforehand.
I say every parent should keep reading and keep questioning the doctor that is treating their child. After all they are our children not there's.

 

[purdueCrohns]

I have been on Remicade for 12 years. Not coincidentally, I have been in remission for 12 years. I would not trade anything in the world for Remicade. It has greatly improved the quality of my life.

 

[purdueCrohns]

I would ask the doctor if he needs to be on Imuran and Remicade at the same time. I know many are on that combination, but the combination does increase the chances of some of the side effects.

 

[purdueCrohns]

The doctor that I go to was involved in the pioneering of this family of drugs. He also really focuses on teaching his patients, so I can answer a lot of questions on Remicade if you have them. Feel free to post any questions on here on here or send a private message.

 

[momoftwinboys]

I have a question. Should we have gotten a TB test and a chest X-ray? H got the TB test before starting remicade. I got the impression that is was either or and chose TB test rather than X-ray to avoid extra radiation. Should he have done both?

 

[Tesscorm]

My son had the TB test only. On separate occasions (before commencing remicade) I asked both his GI and GP about the x-ray and both said they only requested x-rays if the TB results warranted further testing.

 

[purdueCrohns]

I just had a TB test.

The reason they want these things done is because Remicade makes you prone to opportunistic infections. If he gets an illness, have him go to the doctor. People on remicade are more prone to pneumonia. I usually go to the doctor if I have a cough/cold that persists for a while to give the lungs a listen. I would recommend pneumovax if he has not gotten one.

This all said, I've been on remi for 12 years and have had minimal immune issues. I just want you to be aware.

 

[my little penguin]

just tb test here as well.
xray only if there was an issue/

 

[killcolitis]

My daughter had the xray because her tb test was mildly positive (she had the anti-tb vaccine at birth, wish i'd known then what was in store!). Anyway, her xray was clear, and I know she does not have latent tb, it's obviously the bcg, but the Drs ignored the xray and went on the basis of the skin test. I asked why they did they xray in the first place if they were going to insist on the anti tb meds before remi, but of course there wasn't really a reason for that. I wouldn't bother with the xray unless they were willing to accept it instead of the skin test.

 

[momoftwinboys]

Thanks tesscorm, purdueCrohns, and my little penguin. I feel a lot better about just doing TB test.

Does anyone worry about the fungal infections thing with remicade? H is an outdoorsman. Spends a good amount of time hunting and fishing and camping.

 

[purdueCrohns]

Not really. Nothing about Remicade stops me from being my normal pseudo-redneck self. It actually makes it better for that kind of stuff. Crohn's flares don't go well with the outdoors. I have some pretty bad stories from my pre-remicade days with camping

That said I have had a few bouts of jock itch and athletes foot, but nothing that can't be cleared with a prescription pretty quickly.

 

[Tesscorm]

I don't worry too much about 'everyday' germs/bacteria but I do worry about anything beyond 'everyday' stuff.

Stephen plays hockey and the bacteria, mold and viruses that grow on dirty hockey equipment and subsequent infections is a real concern to hockey participants (and parents) even when NOT on meds. I asked our GI specifically about this risk and he was not overly concerned. He suggested maybe just a bit more than the typical 'hygiene' or care that we would normally use for the equipment. His explanation is that being on remicade will not make you 'catch' things more easily but that you may have a tougher time fighting off an infection if that happens. However, he also said, even in their large IBD clinic, they rarely see serious infections.

So, in answer to your question, regardless of what the GI said, I do worry about it and have stressed to Stephen how important it is for him to take extra precautions with this 'extra' risk.

 

[DustyKat]

Matt had the TB test only too.

I say every parent should keep reading and keep questioning the doctor that is treating their child. After all they are our children not there's.

Very true and ask for copies of every test, every image and every doctors letter that is written. I find the letters from the specialist to the GP the most helpful as they summarize the visit and list the recommendations and I can then ensure that they are followed up on.

Dusty. xxx

 

[Tesscorm]

Agree with the summary letters!

I also ask for copies of every 'extra' test (ie imaging, scopes, blood tests if not routine, etc.). However, as Stephen seems to be doing well, I feel a bit silly (get mad at myself for feeling this way but...) to ask for copies of every blood test from every infusion. (Out of curiosity, do you all get copies of routine monthly/infusion blood tests?) But, my solution is to request for a copy of his file directly from the hospital's patient services. I did this when Stephen transferred from the children's hospital to the regular hospital - the file included EVERY test, summary, doctor's note, nurse's note, email, etc. ). As there aren't any pressing issues, I'll probably do this every six or 12 months. There is a cost associated with this but it should be posted on the hospital's website (both our hospitals had a section for Patient Services).