Need advice on flare/medication

[Lam123]

I have been on humira for almost 5 years and unfortunately I think it has stopped working for me, it has been a great five years it has given me my quality of life back. But my usual symptoms have returned, mild cramps, diarrhea, tired, feverish at times and exhausted. So, my GI has told me that my next step would be remicade. I have a few questions about this drug, how often are infusions? Do you have a choice of what day of the week you get the infusion? And what is the cost?

Thanks!

 

[DJW]

Hi.

I just started Remicade.

I had my first dose followed by a second two weeks later. My third infusion is a month after the second. I will get it every 8 weeks. I can choose the day I'm infused. Thankfully I'm 100% covered.

 

[Lam123]

How did you feel afterwards? Are you taking anything else with it?

 

[syzygy]

I'm starting Remicade soon. The loading doses are at 0, 2, and 6 weeks, then every 8 weeks for maintenance. It can be done more often if it becomes clinically necessary.

For me, I was told that I got no say in scheduling the first dose, but would be able to schedule with the hospital for future dates.

I don't know how it will work with Canadian insurance. My Blue Cross/Blue Shield pays 100% for hospital or home infusion and just the regular office visit copay if at the GI office.

There are some threads on cost in the Remicade forums. I think it's pretty steep out-of-pocket.

 

[DJW]

I'm also on imuran. I felt fine after the infusion. Got a boost of energy about three days later that lasted a week. I didn't get that after my last infusion. Maybe it was the placebo effect? I did notice the ulcers under my ostomy wafer are healing after a year and a half of no success.

 

[Lam123]

DJW, where do you get the infusion done? How long does it take? Does it hurt?

 

[DJW]

I get it done in Burlington. The first infusion took about 4 hours. Part way through my lips started to tingle so the infusion was stopped while they gave me tylonal and benadryl. They gave me that stuff before my second infusion. Everything took two and a half hours the second time. No pain at all. The iv needle is very small. The whole thing was very easy.

 

[Lam123]

Should I bring a book to read? Anyone around to talk to?
Is it done in a hospital?

 

[DJW]

Definitely bring a book. I bring my iPod to listen to music. Mine is done at a clinic. Their is usually a couple other people getting treatment and the nurse.

 

[Lam123]

Ok. I saw my GI late August and he said if things didn't improve by next appt then we would switch to remicade. I see him Oct 15. How quick can I switch to remicade? Do I need to be off humira for awhile first?

 

[DJW]

I'm afraid I don't know. This is my first time on biological drugs.

 

[Lam123]

Ok. Thank you for all the info!

 

[Justanothercp]

Lam123,
Sorry to hear humira seems to be losing its effectiveness. I've been on Remicade for about 10 years. I've had no problems with it. I get infusion at the "infusion clinic" at my local hospital. I schedule them whenever I want. My infusion takes an hour, but I'm usually there at least 1 1/2 to 2 just cause they have to hook you up, order Meds etc. and to start, they will give it to you much slower to monitor you. I usually bring a book or something to occupy me. There are others around to talk with if preferred, but I'm not super social. Mine is covered by insurance, thankfully. Although every year I keep my fingers crossed it will continue to be covered.
I also take Budesonide, Lialda, Omeprazole, and an assortment of supplements.
I'm not positive, but I think you'll have to wait 8 weeks between humira and first Remicade.
Good luck and keep us posted.

 

[Lam123]

Thank you so much for the info!