New to Remi

[CDN_Crohns]

Hi Everyone,

I just had my doctors appointment with my GI and he has decided that since my symptoms has slowly progressed, even with upping Methotrexate, that I am going to start on Remi.

So I was hoping you guys could answer a few questions:

1) What should I expect at the start of treatment in terms of number of infusions/ how often/ sideeffects?
2) Is there anything I should take to minimize side effects?
3) Is alcohol okay when on remi?
4) If anyone knows from experience is it okay to transfer Remi to different clinics if I travel?

Cheers, thanks

 

[Grumbletum]

Hi there
Sorry to hear that your Crohn's is misbehaving, but I hope the Remi will sort you out. I had my third infusion recently, and am feeling soooo much better.
To answer a few of your questions, after the first infusion, I had one two weeks later then next after another 4 weeks.
I think most people then move on to 4 or 8 weekly infusions. I've been told they will do another scope to see how things are before deciding on the next step.
Not everyone gets sides effects: the most common ones seem to be a bit of fatigue, slight nausea and some joint pain. With me that only lasts a couple of days after the infusion. I'm not sure if you can actually take anything to avoid these. I would say, try to make sure you are well hydrated on the day of your infusion and after.
I haven't seen any advice to avoid alcohol while on it, so I think drinking in moderation won't do you any harm, assuming that alcohol is not one of your symptom triggers!!
Not sure about the last question but maybe someone else will know.
All the very best to you and let us know how it goes.

 

[rygon]

As said you normally have an infusion 2wks, 4 wks then 8wks after that. Ive had 3 so far and its worked fantastically. Going from so much pain, no energy and losing weight (+ 20+ toilet trips a day). Ive now put on a stone, only going to the toilet 4times a day, and no pain at all. Still not 100% but virtually there.

You normally get a dose of steroids (or anti histamines I beleieve) before your infusion to couteract any side effects. Alcohol is fine on it. I do find I still have to watch what I eat and drink to stop stomach upsets.

Im not sure about trasnporting it as shaking the remi will destroy the proteins, it takes approx 1hr for them to diffuse the remi into a saline solution

 

[andilynn09]

I've been on Remicade for about a 1.5 years now - it's been a lifesaver! I started with the 2 weeks, 4 weeks, and then continue now going every 8 weeks. It takes about 2/5 to 3hrs each time I go. I experienced slight nausea the first couple times, so my doctor had me start taking tylenol and benadryl before I left for my appointment - no more nausea.

I've not had any problems drinking on Remicade, nor was I told not to.

I've always done my infusions at the hospital or at my doctor's office - they adjust my schedule by a week or two if need be if I have to be out of town when I would be due for an infusion.

Good luck! Aside from the inconvenience of how long it takes, it truly has been a miracle for me - I feel good almost all the time!