Kickas.org Forums Treatments, Drugs and Alternatives Anti TNF and other biological medications Remicade (Infliximab)

Hi Jeanna,

Seems to be a good bit of interest/concern about Remicade. I have just had my 1yr. anniversary on Remicade, and for me it has been a life saver. Or at least has allowed me to regain a life.

For the new folks, a year ago I was about as down as you could get. My rheumy, my wife and I were seriously fighting my insurance company for Remicade(all of the usual remedies had failed me), while honestly looking at a future that wasn't so great. We were at a crossroads, either get the Remicade and pray it worked or go on disability at the ripe old age of 41. I made him a deal, I would continue work as a paramedic, and lay-off making fire runs. That cut me deep but it allowed me to keep my job, and stalled for time. Finally with a whole lot of help from my rheumy, his staff, and the drug rep, I was approved for the Remicade. Since the first treatment I haven't looked back, even though I was able to again. And hopefully will be fighting fires again very soon.

As for the TB concerns...unfortunately all drugs have their drawbacks. Being in the medical/public safety field, I have to take a TB test yearly. For the past umpteen years, like somany in the medical field, I have always tested "false positive" from being exposed to the disease while working. So I always have to get a chest xray also. This years was no different...big ol' red spot on my arm, and films as clear as could be.

I have blood tests every other month to monitor my liver and kidney function as well as the regular panels of CRP's and ESR's... We are currently working to remove the MTX from my med list. Hoping that by increasing the Remicade we can reduce the MTX, thus eliminating the possibility of liver damage from the MTX. Fingers crossed, so far its working.

Sorry for the long winded post. Remember this is how Remicade works for me.. As we all know, unfortunately, it might not work for others. There are other ASKickers that have had the same unreal results that I have. And others that have been helped with Enbrel. My rheumy told me at my last appt. that Remicade has finally been approved for the treatment of AS. I hope this is so, and from what I am hearing it must be.

Keep Kickin'AS
Chris

just fyi if anyone happens to have Psoriatic arthritis as well.

An Evergreen Medical center in Seattle is just starting a Remicade study for people with Psoriatic arthritis. I imagine that means there are other studies starting around the country for the same thing. Just called today, AS does not qualify.

Contact number in Seattle is 425.697.2162 Barb or Cathy.

After a year on Remicade I am off disability and back to work. I was on nearly every drug in the book simultaneously, including Oxycontin, prednisone, Indocin, Ambien, etc, etc. Now I only take a few muscle relaxers and sleeping pills. I can go fishing, I have life again. My SED rate has dropped from 60-90 range down to a consistent 4-5. My insurance approved it as a means of getting me back to work, and it paid off. The cost is very high, as I require 3 vials every 8 weeks = $2,400 a dose. But, I'm working and not on disability so society is saving great costs. I nearly had to die to get it, but after being on it a while, I am alive again.

Wow Jeff! The success stories dont get much better than that one!

I'm tremendously happy for you. May the trend long continue.

Take care.
Jeanna

Make hay while the sun shines

Hi,
I have been receiving "infliximab" infusions for the past eleven months during which time the dosage was increased from 3mg/kg to 5mg/kg and the infusion period shortened from eight to six weeks - unfortunately it has been anything but a success although as a result of discussions with most of my fellow Irish participants I find that I am in the minority. Yesterday I ruled myself out of future infusions as the minimal benefits are negated by side-effects.How I am going to cope now is another issue altogether!

Richard,

Sorry to hear about the lack of luck on Remicade. In the next few years there is going to be an on-slaught of drugs like Remicade (commonly referred to as biologics). This area of drug research is just in its infancy. My hope for you (and all ASkickers out there seeking traditional medical treatment) is that there will be one tailor made for you.

Hang in there.
Jeanna

Every problem contains within itself
the seeds of its own solution

is anyone taking remicade without methotrexate? i always thought you had to take the two together to prevent your body from making antibodies against the remicade, but my rheumy said this was not true.

have learned the hard way never to take my doctors word for it so im hoping to get some feedback.

thanks

hi strutsy my name is joe and I started on REMICADE in May of 2002 and have had 4 infusions. Its true its not the same after the first infusion but I've been able to stop all meds since then to give my body a break. I don't take Methotrexate just Remicade and I'am doing fine.

Joe!

First, that's wonderful news! Secondly, welcome to KA! When you're ready for it, c'mon over to the main forum. There's about a thousand folks, who'd like to met ya'.

Kickin' it,
Jeanna

Every problem contains within itself
the seeds of its own solution

Hi, Frances/Jeanna,

Concerning Your lasts posts: First, I´m interested about this new biological meds: so, please, send any information about them- namely, i heard they are kind of breakthrough in approach to our desease (they work on molecular basis-preventing development of AS, am I right?)Second, since I read your experience with biphosphonates, my question is: have You got any benefit from them and are they used for rebuilding damaged cartillage as well or they just prevent loss of calcium (Unfortunately, my stenoclavicular joint was attacked by inflamation year ago, and I made things worst, by asking physiatrists, and getting local corticosteroidal injections for several times into that joint, what caused more structural damage than AS itself).Currently, I am on MTX 20 mg/week, sulfasalazin 2g/daily, having this illness for 11 yrs(since age15).Futhermore, if anyone on this forum is familiar with supplements of help bone and cartillage to be recovered from loss of mass and calcium, that is to say, damage made by corticosteroids?Finaly, I hope that You and other people who are on REMICADE infusions, are doing fine with no side- effects.(There is a possibility also for me, to get on this drug as well, so I´ m interested about results of experienced people.I am particulary interested, and thats most important thing for me: does REMICADE works for joints which are in not so good condition (structural damaged, with erosions) or not?) Glad to hear some informations soon, receive a big hug and regards from Croatia, (Europe).
Faithfully,
Phillip. (and yes, thanks in advance for wishing me welcome in forum, which I½ m following latently for a longer time period-it is the best of a kind and very useful with nice people, willing to help).