Seb,
Cemc is right, I feel. Yes, there is a tiny chance you can get cancer or MS (that one is new, never heard that before) as an extreme side effect from the biologics. However, that chance is SO remote, so extremely rare that I think it has to be only a minor factor when deciding whether or not to take the drug. That might sound like a cavalier attitude to some, and maybe it is, but I guess I fall firmly in the school that I'm definitely going to fight the disease I already have (and that could drastically impact my life in a very negative way) and worry about fighting the other diseases if and when I develop one of them.
Let's face it, cancer and MS are scary diseases--just saying their names and thinking about how devastating it would be to contract one of them is very scary--but the chances of developing one of them from the biologics is extremely remote. Yes, it CAN happen. But one thing is certain: because you already DO have AS, if you don't do something to treat it, the disease will almost certainly get worse as the years pass and, unfortunately, there is a good chance some of your worst fears about pain and disability will come true. If I were your age right now (I am 47), I would absolutely choose the NSD as my first choice in treating the disease, which is what you did. According to your own report, that first try at using the NSD just did not work well for you, which is not a terribly unusual reaction, as it's not an easy program to follow.
Since you have tried the NSD once, but, I assume, have not yet tried any of the biologics, you find yourself at a very important crossroad in treating your AS. In front of you lie three options, not two: you can try the NSD again, knowing that many people have had great success with the diet and that while, yes, it is difficult, if you can reach the point where the diet becomes second nature, there's a good chance you will find yourself in a good place when it comes to AS.
Second, you can decide to try the biologics for the first time. Again, many people--myself included--have had great success with the different drugs available to us. Anyone who asks me, I absolutely advocate using Enbrel and Remicade, as they extended my work career by at least 5 years (and would have been much longer if they had been created earlier) and changed my life in a very, very positive way. However, I always add a "but . . . " to my endorsement of the biologics because I recognize that they are powerful drugs that can have strong, negative side effects, meaning even though they have worked for me and I recommend them, every person has to do their own homework and make their own decision about whether or not to take them. Because you are so young and you still have a chance to really stop the disease in its tracks, to me that would increase the odds that I would decide to take the drugs if I were in your shoes.
The third choice is to explore other, even more alternative treatments that are, as of this time, only used by a small number of people. These treatements can include herbal remedies, acupuncture, radon treatments, and many others. Perhaps the most promising lesser-used treatment is the LDN (low-dose naproxen) regimen that quite a few KA members are starting to use with good results. I don't know enough about any of these alternative treatments to even comment on them, but you can find plenty of info about them here at KA.
Finally, there is the fourth option, which is to do nothing (or next to nothing) when it comes to treating your AS. To me, this is the only option you absolutely CANNOT choose, and yet I fear you are right on the brink of inadvertently choosing this route because your fears regarding the negative sides of both the NSD and the biologics is leaving you almost paralyzed and unable to make a choice. Whatever you do, Seb, you just can't let this happen. I know it's easy to become depressed about the future, that it's easy to feel a real sense of hopelessness about the future because AS can cause such very real and very serious problems. However, if you let that depression and worries about the side effects push you into a place where you're unable to choose a treatment option, it's almost a certainty that your worries will become a self-fulfilling prophecy. In other words, you're so worried that the years ahead are going to be terrible due to AS that you're on the verge of doing nothing to stop the disease now, thus absolutely guaranteeing that the years ahead WILL be bad. Does that make sense?
If I was your age now and facing AS, I would try my hardest to look at things this way: Yes, it is a bad disease, but right now, there are more potentially excellent treatment options available than at any point in recent memory. If I look back to what was available to me when I was your age, I see this: No internet, meaning no communities such as KA where information is readily available (trust me when I say that it was next to impossible to learn ANYTHING about this dang disease back then); no biologics, meaning the only real med that docs used were the NSAIDS, which we now know are generally awful drugs that should only be used as an absolute last resort; and no way to really learn about the NSD and gain from the experiences of others who had used it already (thanks in large part to the whole "no internet" thing). I hope that when you look at things that way and realize how bad things were just a very short time ago, it will give you some hope and help you overcome your depression regarding the disease because honestly, Seb, even though things are far from great right now, you absolutely do have far more potentially positive options to choose from than AS patients had even 10 years ago. And, to be even more optimistic, I know there are even more biologic and genetics-based drugs and treatments in the pipeline that could REALLY revolutionize the way AS is treated.
I didn't really mean for this to end up sounding as much like a "pep talk" as it does. The main message I wanted to convey and which I will repeat right here is a simple one: Don't let your fears paralyze you to the point you end up doing what amounts to nothing to treat your AS. Examine the treatment options available to you, choose one, and approach it with all the optimism you can muster. Make sure you fully commit to your choice both physically and emotionally, as doing so will increase your chances of success. Once you've made your choice, give it a real chance to succeed. That is, if you decide to try the NSD again, don't get fed up and quit after just two weeks because that means you would have wasted your time even trying. Same with the biologics; if you choose that route, study the literature and talk with your doctor to determine how long you need to stay on the drug to get an accurate picture of whether or not it will work for you. Anything less is, again, a waste of your time (the one exception to that rule would be if you had to stop taking the drug at ANY point due to negative side effects--of course you need to listen to your body and stop taking the drugs if you do have an adverse reaction to them).
If you can do this, if you can make a choice and stick with it long enough to make an accurate assessment as to whether or not a given treatment option will work for you, then I think you'll see the depression start to lift no matter what happens. Ideally you'll see very positive results from your choice and you'll be less depressed because you are feeling better than you've felt in years. That is my dream for everyone here at KA. But, even if the path you choose ends up not working for you, I think your depression could also be decreased anyhow because you took the bull by the horns and chose to be pro-active instead of quitting and doing nothing. Yes, there would be a let down because the option you chose didn't work well, but you could still be proud of yourself for overcoming your ennui and depression so that you could actually FIGHT against your disease.
Hope this helps (and makes sense!). Good luck to you Seb, and hang in there, as things can definitely get better.
Brad
