I have had AS near;y 40 years, I am badly bent, 5 inches shorter than when it started, partly to do with 3 fractured vertebraes along the way. The meds I took for years ruined my stomach and a few years ago I was offered enbrel (in UK different have to prove that no other cheaper med will do before being offered something like Enbrel, but I qualified) It was so great and I felt so much better, then I deveoped problems and had to come off it a year ago in order to ensure it wasn't involved (it wasn't) but by then they were planning major surgery so unable to go back on it. Saw my Rheumy yesterday and he agreed with me that I am falling to bits- all sort of bits of me that have given no problem for years are aching difficulty walking, sitting, using my hands, so its all go to get back on Enbrel asap.I did not hesitate. It worked for me, I had no side effects. I will be taking meds the rest of my life one way or another, so I would rather take one that worked as well as this does. But we each have to weigh up our decisions- we are all different and must walk our own path, but I'd rather walk it in comfort - good luck

Oh my goodness, yes! I think many of us who are on meds feel the way you do at one time or another. I have, on more than one occasion, stopped taking my AS meds just to see if I could have a decent quality of life without them. It distresses me sometimes that I have to put potentially dangerous chemicals into my body in order to relieve symptoms of a disease I'm never going to be rid of. It doesn't take long, however, for my body to remind me WHY I take the meds. Were it not for my anti-TNF and pain meds, I would be hard pressed to walk, much less be a productive member of life.I think the feelings are normal, and in a way, healthy. Most individuals don't want to believe that they are dependent on any type of substance in order to feel their best. The reality is that we have AS. The very nature of the disease erodes our ability to move freely. Two hallmarks of the disease, pain and fatigue, are a daily reality. I challenge anyone without AS to live their entire lives without one or more methods of treatment to control the symptoms or resultant damage from long term disease.Now, let me tell you my perspective on meds. I think that if you want to try living well without meds, that is your choice and your privelege. On the other hand, you are the only person who can assess whether or not the state of your disease prevents you from participating in life.On a practical note, ask yourself--"does the Remicade make me feel better, worse or no different?" Also ponder any side effects you may or may not be having from the infusions. Once armed with the answers you will be in a position to feel more comfortable about any decision you make about Remicade.Good luck, and keep on posting,Tyler :)

Unfortunately, because you are on Remicade and being that it is part "mouse" then you need to seriously think before you stop it and then retry to start it.  Restarting it will greatly increase you chances of having an allergic reaction to it is you stop it because your body will try and develope the antibodies while you are "off" of it.  If you stop Remicade, then you need to consider Humeria, Enbrel, or Saponin (ignore typoes, I'm too lazy to look up the correct spelling)  if you decide to go back to treatment because neither of those are monoclonal treatments and hence not partial "mouse" so there is no chance you can produce antibodies.

I am not on Remicade, but take Humira . I found that your wording of this question, plus the answers you have recieved touched me.

As encouragement only. This is a life long disease, but please don't dwell on that. Stress actually causes pain flares. Now I'm not saying that it is the only cause of your pain, and that thinking only good thoughts are going to cure you, or even make life better. That would be silly and very incorrect of me to say.

Listen to you rheumatologist, and learn all you can to live with this disease, and manage it as best you can.

Good Evening, my friend! Unfortunately, Remicade hasn't worked for me. I've had been on it for a year or so, taking the highest dosage doctors prescribe, with no signs it was working. I didn't want to change meds, though. I felt Remicade hadn't achieved it's best performance at the time. Doctors will doctors... We never know much, do we?! I've been on Humira for one year and seven months. Only now it began to work. I would tell you to stick to it a little longer. After I stopped taking Remicade, AS advanced very much, very fast. Lesson: It was working... While I was on it, the illness didn't get any worse. This is my opinion, based on a personal experience. I hope it helps. You are in my thoughts and prayers. Take care!

Are you kidding? Everyone here has probably looked at all their meds, and at the needles and IVs and just wanted to run away from it all. My life used to be normal-ish, and now I'm dependent on meds. For someone like me - a lifelong athlete - it's incredibly frustrating to not be able to do the physical things that I used to do without even thinking. And the extreme stuff like cycling through the mountains of Mexico ... Those activities are in the past.

But I would do anything to get some kind of normalcy, so I give myself some physical goals and even some mental and emotional goals and see how I can best get there. Quitting your TNF inhibitor medication isn't going to solve anything - it'll just make you sicker. Talk to your doc about your frustrations, or go see a therapist or talk to friends and loved ones about your frustrations. It's difficult to keep it all inside, as I'm sure we all know.

Although I'm not familiar with Remicade, I've been on Enbrel for 5-1/2 years now and my hope is to be off it someday. I'm now on a half-dose (25 mg/week), which I did with my rheumy's consent after being on a strong antioxidant for a long time and feeling much more energetic because of it. Even if I can't get off of the Enbrel entirely, I feel good about doing something natural to mitigate the side effects and make my body healthy overall. I work at a natural health college and before going on the Enbrel I spoke to a number of natural healthcare practitioners to get their take on it. The most enlightening was an acupuncturist who said that in Oriental medicine they combine east and west - sometimes you need meds, but you can balance them with other, more natural things for your body as well. As I've said in previous answers, and at the rist of sounding like a broken record, diet is so important - eliminate as much sugar and simple carbs (the processed kind), eat a low glycemic index diet, and take antioxidants as well as a GOOD fish oil (mine is made from sardines and anchovies, so the mercury content is as low as you can get), plus a good multivitamin. I also drink aloe juice to protect me from getting sick, since as you probably know, these meds lower your resistence. These things will not cure your AS, but they can help to relieve the symptoms by reducing inflammation and, especially with the antioxidants (in particular, pycnogenol), you may get to the point where you're feeling so much better that you can approach your rheumy about cutting back a little and seeing what happens. I go to see mine every 4 months instead of every 6 months so she can keep a closer eye on it, and I've been on the half dose for over a year now. Good luck! I hope this helps.

I've been on Remicade for ten years - I've honestly never considered stopping, I had over twenty years of terrible pain and the crippling affects of AS marching me forward to a life of misery prior to Remicade changing my life in 2001.  I have held strong and have not lost much ground since going on Remicade...these last ten years have been MUCH better than any five since age 17 (I'm now 52).  As we all know, no medication is a cure, but this drug has slowed the march of AS to a snails crawl with me.  I am fused from pelvis through ribs and neck and have lost over 4"'s in height (all prior to Remicade), but I am amazingly active and living a once unimaginable GREAT life now thanks to Remicade...I feel that a yong person could potentaily not fuse or suffer anywhere near as much as I did if they are responsive to Remicade.

Denise, as for your treatment, I've never had ANY side effects and while at first I would be a bit rundown after treament, I now seem to get a "charge" and am very active after a treatment...no pain as it flows in, just bring a book and relax...it's a few hours every so often that potentailly may give you your life back....

I only wish it worked as well for everybody as it has for me...I've never had any other TNF blockers...but ran the course with most everything else - Methotexate and Imuran where terrible for me and only made me sick and more fatiugued...Oh, and I DO NOT do pre-meds or take anything with my Remicede....I ONLY use Remicde now and a very occasional Darvocet.  When I strated Remicade I was on a "drug store's" worth of stuff and still had very active inflamation and severe pain constantly.

I believe everyone who is on a long term course of medication struggles with this at some time or another. It's hard to really remember how you felt before the Remicade but obviously it was bad enough to need the medication. I know someone who is Bipolar and will need meds probably forever,he's a young man and the idea of this being the rest of his life is hard to take. Without the meds he may become so depressed that suicide will be considered again.With the meds he's happy and working. Weigh the options, you said it yourself "it has changed my life". As long as it is working for you, you aren't suffering adverse side effects and you're feeling good...why mess with that? Go for your infusion tomorrow and know that you are doing what is right for your situation at this time. Maybe someday a new drug will come along or they'll cure AS but until then keep on the path that works:)

I have considered stopping and going back to Humira but I have only had 3 infusions.

I am hoping my first infusion will be on Wednesday.  Can you share with me how you feel after you get your infusion and any side effects?  I know I did not answer your question, but looking for information.