To those on Remicade... | Arthritis Information

What dosage does your doc have you on and does it seem to have enough "kick" for your RA? I saw a new doc that suggested that we give it a try again. The RD that had me on it a year ago kept me at the minimum dose which I believe is 325mg. It did nothing for me at that dose but the doc I saw friday thinks that maybe 5mg/Kg of weight would start giving me some relief. That would put my starting dose at about 525mg of Remicade and I believe he said it could go as high as 10mg/Kg or more if I can tolerate it. After that, Rituxan is my next option. I want to keep the "big gun" for last as Rituxan seems to be the most potent thing out for RA right now.

Thanks

Bob

Why would you stay on something if it wasn't working? Did you tell the doc that?

Most doctors start at a minimum to make sure you tolerate the drug and see if it's working. You need to ride herd on your treatment, nothings going to work if you don't get the doctor in your corner to get something that is effective. Whatever dosage brings you relief without screwing up something else is the dose you need and only you and your doctor can determine that.

mab522008-12-07 20:05:45Well, I left the doc that had me on the Remicade. We had a bit of a disagreement. I mentioned several times that I thought I might need more of a dose but she never adjusted it. She's also one of those that is always doing clinical trials and this made me feel like I was an experiment. Let's see what happens if we don't up the dose...maybe he'll tolerate it with no flare...maybe not. I'm not saying she did that to me...I'm just saying that's the feeling I got sometimes. I was on 10kg/mg at a 4 week interval...I am not sure what my doseage is, but I get 2 vials... so I am guessing that is 200mg. It does GREAT for me, except it does not last long. I am to get it every 8 weeks. It normally starts to wear off like 3 weeks before my next infusion. That is when the inflammation, pain, and other problems begin to return.

I done very well when I got it those couple of times at 6 weeks apart. I only had maybe a week or less than 2 weeks of problems before my next infusion.

But she cut me back to every 8 weeks, since the possible TIA (still have not heard about the bubble test results), and my rapid pulse.

This crap is going to go on forever... it feels like!

I know of this one guy, goes to the same RD as me, and he was at 8 vials of remicade, and trying to talk RD into letting him have 9 vials before they switched him to Orencia.

joonie2008-12-07 21:21:41

I am not sure if I get 2 or 3 vials. I cannot remember. I just know I am on the lowest she feels safest in giving me. I even get a nice little benedryl to go along with it, in conjunction to my pre-meds of allegra-D.

That starting dose sounds about right. I was on 800mg. every 4 weeks when it failed. Decided to go back to Humira but weekly and boosted MXT to 20 mg. weekly, added Sulfasalazine and it's all been working for me for over a year.

Sounds like a good plan and it may work for you at the higher doses. There's no reason to go onto the next drug until you've maxed out the Remicade dosage. Lindy

LinB2008-12-07 21:24:50Well I was on remicade for about 6 months and then my doctor took me off of it. I seen no difference in remicade besides the first couple days. The day of the infusion I was extremely tired and then I had energy and felt wonderful for about 3 days and then I was back to my normal stiffness and barely able to move self again. I was only taking one vial of remicade and my doctor wouldnt up my dose nor even think about it. He sent me to another specialist and they had talked and decided since my husband and I was trying to get pregnant that I shouldnt be on it. They have me on the lowest dosage possible of my meds and nothing seems to work for me. So the doctor has referred me to pain management which to this day still cant get ahold of and its been well over a month now. I have thought about finding a new RD because this just isnt working. I really like my doctor but he just seems to be giving up on my situation and Im not getting any relief. I was on 9 vials every 4 weeks. He said that was the max for ra. It started to work like 3 months in to it. Then in about the 4th to 5th month I had a reaction to it. That was the only med that has worked for me. :(Bob - I am reading old articles out of England from 2000 that says that Rituxan "cures" RA. Its taken with two other drugs, so a three-drug hit, but if these claims are true, this is the cure. It's only given after everything else fails (you would think with the 'hit it hard and fast" theory, you would be given Rituxan first), but I would look into it. Good luck. JSNM, Please post article. Lindyhttp://www.telegraph.co.uk/health/1372268/Breakthrough-as-scientists-discover-cure-for-arthritis.html

http://arthritis.about.com/cs/bcell/a/remissionra.htmThanks, JSNMI have sarcoidosis not ra but I started on 5mg/kg and at 4 months went up to 10mg/kg and I get the infusions every 4 weeks. Its worked better than any other drug for me. I'd give it 3-4 months max at that dose than if you are not improving enough, definitely ask for the dose to be doubled. Whoops, I forgot Sarcoidosis (remission)

Hi Michele, glad to see you posting. Rituxan didn't "cure" my ra. Didn't even help.It looks as if I will be going back to Remicade pretty soon. When I was at the docs office on Friday his nurse said if I get the paperwork needed in to her today then I could most likely start infusions before the end of the year. Maybe even before xmas which would be nice.

I was told one thing that kind of has me concerned. The doc said that, because I was on it once before, I could have made antibodies to it. He said the first infusion would go well, no problems, but by the second my body would "remember" it and I could have a reaction to it. He says this doesn't happen a lot but it can happen and I believe he said they just give benadryl for it. At least I think that's what he said they do.

Rituxan is probably going to be the next in line. The RD that I have now, and this new guy that I went for a consult with don't like Orencia. The new guy says he only has one patient on it and that's only because this patient failed everything else already. Kind of like me. I haven't really failed everything as much as I just haven't gotten the results that were expected. Funny too because meds usually hit me pretty hard.

Thanks folks

Bob

Forgot to add. I just read the articles about Rituxan. There is something that I wonder. I usually have a low lymphocyte count anyway so if the docs use Rituxan on me I wonder if that might just be asking for trouble? I think the doc told me that in that case they may use it, but also give me an IV infusion of immune globulin. (which is ungodly expensive by the way, my insurance will love that)

Bob

My rd increased my dosage to 600mg on my last infusion 11/6. I felt great afterwards and boom the next week I came down with the worse sinus infection that put me to bed, I survived that and the very next week another sinus infection. I think that treatment was a little hard on my system.

I am due for another infusion on the 29th of this month which will be my one year anniversary on remicade. I will see how it goes.I was on Remicade for about 5 years. It did work for me but the dose had to be 'upped' every year or so because it wore off way too early.

My doc said I could go back to it if Humira didn't work for me (it does).

Joonie you need to ask for a bigger dose!

Bob take Benedryl (pill form form or infusion). It really helps people not have reactions...remicade was tested with benedryl and it is recommended for the 3 starter doses. Lots of people always have benedryl with remicade - me included.

I am on the highest possible dose for my weight.

i take 5 vials about every five weeks. i have been on it 5 years the med dosage has increased over time. i am questioning how good it still works for me. my doctor is not willing to change me yet as i am a very difficult to treat patient.If they based the dosage on my weight I'd take 2,000mg Ok, so not really that much, oh how I love prednisone. After this "encounter" with steroids, I'm more bitter than the prednisone itself. That's something I've never asked. Is it just me or is prednisone like the worst tasting stuff of all time? Every morning when I take mine is a total yuck fest!

Bob

Well Bob... I never taste the pred that much these days. Only the times I put it on my mouth and then forget I do not have anything to drink. It does leave a bitter taste in your mouth the whole day after it touches your tounge. So... now I ask hubby to get me something to drink while I am getting my meds out.

Hope you feel better soon, Bob.