info on Remicade (infliximab) and rheumatoid arthritis, Please!?!

[thistlegirl]

I am new to this site but not new to arthritis.
I am 28 years old, i was diagnosed with rheumatoid arthritis at 18 months and Uveitis at 16 years old.
I have worked my way through most of the meds out there and now the docs want to try me on Remicade(infliximab) i am looking for info from people who have had possitive and negative results from this.
I have already reacted to methatrexate but i have read you need to take it to help with the side effects, what side effects and what dose?

I have lived with arthur (as IT is known in my house) all my life, some weeks are better than others, this has been well said by Irishgal "what athritis feels like"
I have hit a bad spot and i know things will get better but it is always good to hear from others who are going through the same things you are. My mum said that by he age of 5 I was saying "Doctors know nothing!" and standing in the corner stomping my feet , saying "bother" when things got too much for me.
I still do this but the words and actions have changed with age, reading this site is also helping.

Hopefully next ime i post i will be in a better place.

[teachergirl64]

I had 3 infusions of Remicade before I realized that I should have been ordering it through a specialty pharmacy my insurance requires rather than letting the doc bill for it. The insurance was only paying 1/2 and I had to stop because of $$$$. The sad part in all of this is that it works for me and I know it does. I just can't afford to do it the way every doctor I have seen insists on doing it. If you decide to try it, be absolutely sure that you are jumping through all the insurance hoops or you could get stuck with a big bill.

6 days after my first infusion I came wide awake as I lay in bed stretching before arising and realized that I had just made a complete fist and IT DIDNT" HURT!!! It just got better from there. I believe Remicade needs MTX in order to work maximally. I'm not sure if you can take it without it but I think you can. Remicade also treats Crohn's disease and I don't think those patients have to take MTX. It's something you could probably research or ask your doctor about.

A member of another board I visit started Remicade last year after years of RA and it literally has given him his life back. I'd take it again in a heartbeat and will if I can convince my rheum that my treatment is more important than his bottom line. The only side effects I noticed was being very tired (sort of like the fatigue of a flare) the afternoon of the infusion. It does knock out your immune system for 48-72 hours after an infusion so you need to avoid germy people during that time. I teach little kids and wore a mask when lots of them were germy and sharing those germs freely.

[mimi423]

I'm considering starting Remicade, my doc will do it in his office but my ins will pay the entire amount. He tells me that he will wean me off of my 3 methotrexate pills but of course, we will have to see on that but I also have a mild case of RA. I have posted asking for insight on which of the RA drugs out there to take, I don't think I got a fair amount of info on Remicade because I think the cost stops alot of people from even trying it, I'd just like to start out with the best product out there as I'm well insured. My husband works with a guy, late 50s, who says Remicade gave him his life back, he also takes 3 methotrexates but before he was on 7 a week and it was doing nothing for him. Hope this infor helps somehow.

[rennah77]

I also started with the Remicade infusions, but due to the cost I had to discontinue it. My insurance paid 80%, but even with that I could not afford the 20% I had to pay. After 2 infusions I started on Humira. I have been taking the Humira injections for about 3 months now and this has made a big difference in my life. I have been able to get off of the Methotrexate, only on Arava (hopefully to get off of that in the next couple of months) and don't require any pain medication at all. For the last 2 years before starting these injections, I was taking pain medication daily, could hardly walk, and was considering quiting my job. Now I have more energy and life is good again. Highly recommend it.

[thistlegirl]

thank you for the replies. i am from scotland so thankfully i do not need to worry about the cost, although my doc does need to get the go ahead from the people who hold the purse strings,hopefully in a few weeks.
the doctor is checking to see if my stomache reaction to the mtx is due to the steroids and all the other pills that are rattling around in me at the mo so i should hopefully be able to cope with the low dose required.
i was at the hospital yesterday for some steroid injections to my joints to tide me over until things get started, i now feel like a pin cushion.
I am also a teacher(high school) i hope to get back to work next week, it gets very frustrating not being able to do a job you love, even if it is with germy kids.
I am looking forward to having more energy, i would love to be able to go out on a school night!!