Had my first Infliximab infusion yesterday at Aintree ...

[SignalBoxer]

Didn't feel any different after it , but today not feeling that well and also very tired.

I'm sure it was just Infliximab on its own and non of the other stuff that you guys have been mentioning that you had as well to stave off any side effects - so I will have to ask Denise ( Behcets ) nurse to see wots wot .

[behcetshurtsbeyondwords]

Hi Hugh,

That is excellent that you made it through your first infusion ok, but sorry to hear you aren't feeling as good today. This is fairly normal (well for me anyways)-- I tend to be ok the day of the infusion (but sometimes very fatigued right after having it), but the next day tends to be horrid. I think this happens because your body is adjusting to the drug that's now onboard. Our body's are so used to constantly attacking things (especially it self!), and I notice that any time I take a medication, my body temporarily reacts to it, as if its trying to attack and fight off the med too-- this happens even right after I swallow my steroid or my pain meds, which I take every single day and throughout the day.

I would like to be able to tell you that this unwell feeling won't happen after each infusion, but I can't promise you that.

What I can tell you is that this feeling of your body trying to fight the Remicade, won't last forever.. give it another day or two and you should be feeling back to the way you did before the infusion. Then hopefully after a bit more time, you will begin feeling even better-- hoping the Remicade helps you

Another thing is-- just wondering if you are on daily steroids? Because the very first infusion I had, my body started going into a crisis and my nurse quickly injected high-dose steroid into my i.v and immediately I started feeling better. My doctor now gave a standing order for my nurse to give me an i.v. injection of 100mg Solu-cortef prior to the infusion, and then another injection of 100mg toward the end. This really helps my body to remain stable during and after the infusion. This might be something you would want to bring up with your doctor or nurse.

Hope you begin feeling more like yourself again, sooner than later! Take care

-Jenna

[SignalBoxer]

Thanks Jenna ... That sounds good advice .. Feeling bit better today now .. But I will chat to someone at the hospital about the other stuff .

Thanks again

Hugh

[behcetshurtsbeyondwords]

You're welcome, Hugh

Glad to hear that you are feeling a bit better. I know how tough it is starting a new med and then becoming sick right after-- it brings on worsening or new anxiety because when you take medicine, you are hopeful that it will start helping you right away. But as you know, things aren't as straight-forward with Behcet's. I will keep you in my thoughts and prayers-- wishing all the best that the Remicade will be the one that helps improve things for you

Take care

-Jenna

[scruffy1]

hello hugh welcome to the infliximab family i have had 3 infusions and felt the same as you did after each one so i think the sickly feeling is normal and after a few days you should improve quite a lot i know i have improved overall and have gotten some semblence of normality back its a serious drug and has had a great effect on my behcets so far fingers crossed but as jenna says behcets is not straight forward as you well know but take the good times when you can hope this helps,

regards chris

[SignalBoxer]

Thanks for leaving a comment Chris