Hi everyone , i was wondering if anyone knows ...are you allowed food & drink before 1st Infliximab infusion ?

[SignalBoxer]

I've got my first Infliximab infusion next Tuesday 11th June at Aintree and I've forgot to ask about eating & drinking before ... And also how did it make people feel

[andreafm]

Hi there

I have been having infusions since February of this year and have always eaten my breakfast and drank plenty of water before going.

I also take a few light biscuits and more bottled water with me as the extra prednisolone, paracetamol and piriton given can be quite drying and you can feel a little whoozy. I find the more water I drink during the infusion the better I feel and less side affects I get.

I have mine in the Haematology Department and we are offered drinks and biscuits all the time. But I find it is nice to have it on my table as I don't like keep bothering the Nurses for cups of water.

Also continue to drink water on the days following as this helps with any after effects like feeling a bit tired.

Personally this is not a problem for me as I am a water freak anyway, but just thought I would make a point of this as some people are not into drinking water and might not hydrate enough.

I hope it all goes well for you

Andrea

[SignalBoxer in reply to andreafm]

Thanks for the advice Andrea and such a fast response Lol , it's ok I drink a lot of water too these days , so I will bring some supply's as well as having a good breakfast

Thanks again

Hugh

[behcetshurtsbeyondwords]

Hello Hugh,

Yes as Andrea said, you should eat a good breakfast and be well hydrated for your infusion. I've been having them for a little over a year now and I noticed right from the start, just how dehydrated it can make me. My nurses told me to try drinking lots of juice (not just water) during the infusions because the very first time I only had water and it didn't seem to keep me hydrated enough and just flushed out of me right away, so the sugar in the juice helps to keep the fluids in my system for a bit longer. My nurse also started giving me a second i.v. bolus of sugar water with the drug because my body would gulp up one entire bag too quickly-- so I guess this drug is known to dehydrate the body. Like Andrea mentioned, you should be fine as long as you have fluids. It also helps to have food in your stomach before and during the infusion just to help ward off any upset to the system and also to help keep you feeling strong.

I haven't had any serious problems from the drug nor any real bad side effects. For the most part it just dehydrates me and wears me down a bit. About half way through the infusion I usually start to feel "clouded" in my head and very drained... I can be all alert and talking away to my nurse and then the next minute, feeling all confused and sleepy. I receive high-dose steroid injections now prior to the infusion to help my body cope better with the heavy and potent drug going into me. Usually the evening after my infusion, I just rest and will just sleep it off. The best thing to do is just listen to your body and if its telling you that its too drained and needs to rest, than just go with it-- don't try fighting the exhaustion because that just makes it worse-- and the important thing to remember is that it will go away, usually by the next day. Some people can be fatigued for days after their infusions, so it all depends on your body and also what kind of condition you were in going into it.

One serious thing that I want to mention to you (but don't want to scare you) and be honest about is the fact that this drug is very potent, and like many other Behcet's treatments, it carries its own risk for Lymphoma and other blood disorders. I have had a Lymphoma scare twice now (in only one year of being on Remicade/Infliximab) when they found my LDH levels sky rocketed in a very short amount of time (which I guess is a very common signal of Lymphoma)-- which were both associated with the drug. I don't mean to scare you and worry you though because every drug really carries a large list of potentially serious side effects. Also, the benefit will usually outweigh the negatives of this treatment because leaving Behcet;s Disease untreated poses its own risks as well. I just wanted to warn you about this so you are fully aware and can make your own informed choice because often doctors will not bring this stuff up to you.

I hope that you find some good relief from this treatment and best of luck

-Jenna

[SignalBoxer in reply to behcetshurtsbeyondwords]

Thank you Jenna for your sound advice , it does worry me a bit about the potency of the drugs that I'm taking and due to take but if it can stop these flare ups and fatigue etc .. I'm willing to give it a go for now ... But thanks again for pointing it out to me - I will post my progress on here when I can

Hugh

[infliximab74]

Hi I had infliximab for 3 years and it worked great for me. I got my life back and had 2 children so I do hope it all goes well for you x x x

[SignalBoxer in reply to infliximab74]

Thanks , that makes me feel a bit better..fingers crossed

[Michja]

Hi Hugh,

My daughter is having her 4th Infliximab tomorrow. Jaida is now starting to responding to the treatment & I wish you the very best. They encourage a normal day, including food. I do recommend a good book or if you start to feel a little unwell a movie on a IPad. It wipes my daughter out during the treatment & I wouldn't recommend you drive home.

Good luck. Michelle.

[SignalBoxer in reply to Michja]

Hi Michelle, thank you for your advice ... Glad to hear your daughter Jaida is responding to the treatment

I will take a book ... My wife is meeting me their and we are going on the train so no worries of driving for us ...thanks again

Hugh