Hi Mike,
First of all, this is the first time I've seen one of your posts, so welcome to KA! We're glad you found us, and I hope you find all the help and support that you need here.
Your question is a big one that many KA members have faced in recent years as the anti-TNF drugs became more commone. Currently, I am on Remicade myself, which follows about four years on Enbrel (oh, and I did take Humira for a month). I am 44 and have had AS since I was 18, and it became very severe in my mid-20s. I have complete spinal fusion and severe kyphosis (to the point where I needed a spinal osteotomy over a decade ago), have had both hips replaced, and have experienced some involvement with all of my major joints. Even with that level of damage, the anti-TNF drugs were a HUGE help to me and an absolutel lifesaver. They absolutely helped reduce my pain and inflammation levels, and without them, I would have had to take my disability leave much sooner than I eventually did (just last September).
I switched from Enbrel to Remicade about five months ago because the Enbrel finally lost its effectiveness, which some other members have experienced. However, this turned out to be a good thing, as the Remicade has been nothing short of amazing. The Enbrel made me feel better, no doubt about it, but the Remicade was darn near life-changing. I was in really rough shape when I stopped working last year, and now, one year later, I feel so much better and am in much less pain.
As you can guess, my vote would be for the anti-TNF drug. Besides the fact that they help me so much, I have other reasons for feeling strongly about this matter. First of all, long-term use of NSAIDs has been 100 percent proven to be a disaster for the human body. While they do help lessen the pain and inflammation, sometimes to a dramatic degree, the damage they cause to our stomach and intestinal tract are simply too devesating to justify their long-term use except when there is absolutely no other choice. New drugs such as Prilosec, etc. do help protect the stomach better than could be done in the past, but that does not mean that they offer 100 percent protection. In fact, the longer you stay on NSAIDs, the greater your risk of bleeding ulcers that can be life-threatening (and without any warning too). Besides those obvious health risks, the group here at KA that follows the No-Starch Diet protocol also has some compelling evidence that NSAID use actually makes AS worse not better. While not everyone agrees with that research--and I can guarantee you that your rheumatologist won't--a growing number of doctors and other scientists DO believe that, and it is pretty much certain that NSAIDs cause more damage than we even know about.
Now, all these scary things about NSAIDs are undoubtedly making you say, "That settles it, I'm asking for the anti-TNF drugs NOW!!" As I said, I personally agree with that choice, but you need to know that anti-TNF drugs certainly are not without risk of side-effects either, some of them severe. If you check the permanent posts at the top of page 1 of this Anti-TNF forum, you'll find a post that explains how anti-TNF drugs work and what risks are associated with taking them. Please note that the information in that link was first releases in 2006, and since then, more information aobut potential side effects has been issued--if you search through some of the archived posts here at KA, you'll find posts related to those new findings. Just this week, in this forum and also in the main forum, a member posted a link to a brand new FDA study concerning fungal infections and their relationg to the anti-TNF drugs that is forcing the pharmacy company to include sterner warnings about the chances of being stricken by such an infection while on Remicade. Other known risks include an increased chance of tuberculosis, and even very rare instances of lymphoma in anti-TNF patients.
Thus, there is a lot to think about when deciding which route to take. However, my personal choice was a clear one. The anti-TNF drugs have been shown to slow the disease process and greatly reduce inflammation caused by AS. The drugs have been shown to do things that NSAIDs simply cannot do, and without the serious stomach issues associated with NSAIDs. In addition, for those who have experienced positive results with the anti-TNF drugs, the reduction in pain and subsequent improved quality of life has far, far outpaced any relief they experienced on NSAIDs. Unfortunately, not everyone responds to the anti-TNF drugs. While there have been many happy posts from KA users after receiving their first anti-TNF treatments, there have also been heartbreaking posts from people who had put so much hope into the drug and expected to feel the relief others here had felt, only to find that the drug just did not work for them. Luckily, the percentage of patients for whom the drugs have not worked at all remains low (even one patient who doesn't get relief from the meds sucks, however).
In the spirit of full disclosure, I feel I should tell you that, in conjunction with my Remicade, i do also take Celebrex, which is, of course, an NSAID. However, before i started on Enbrel, I needed at least one Celebrex a day, often two. After Enbrel, and continuing with Remicade, I instead only need to take a Celebrex about once a week, sometimes twice. I know this sounds odd, as it seems unlikely that I would receive any benefit taking the Celebrex so infrequently, but I have no doubt that it does help me. After a week or so without one, I notice that I feel a bit achy and feel as if my inflammation is on the rise. So, I take one with dinner, and by the next morning, I feel much better, a feeling that lasts for about a week. I would rather not take even this single dose, and if push came to shove, I would drop it, but I keep doing it right now because it really does seem to help a lot.
One last thing: Before deciding on either drug regimen, you might want to check out the NSD Forum here at KA. There you'll find a guide to getting started on the No-Starch Diet as well as tons of recipes and thousands of posts from other KA members who follow the diet and swear by it. While there is still controversy surrounding the diet in some circles, one fact absolutely cannot be disputed: Treating ANY disease by natural means is always preferable and safer than treating it with pharmaceuticals. If you have the discipline to follow the diet, and you find that it works for you, then by all means, that should be your first choice, period. All drugs have side effects, and the drugs we are forced to deal with to treat our AS have particularly nasty ones.
Hope that helps. Good luck, and keep us posted on what you decide.
Brad
