Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Should I start Enbrel?

I'm only 27 and I don't want to burn through the biologics [anti-TNFs] at such a young age. I was diagnosed at 22, and have been pounding NSAIDs since; celebrex, vioxx, diclofenac and indomethacin. About 18 months ago my doctor prescribed me prednisone at a low dosage to use when I play sports.

He recently expressed a concern about the long-term side effects of prednisone use and said he'd like me to try Enbrel. But here's the thing, I feel like my pain is bearable. Yes, at times when I'm in a flare I feel awful, but I'm not sure it's so bad that I want to risk not being able to take the heavy hitters later in life. I want to be able to play with my kids, you know? Again, I don't want to burn through the anti-TNFs before I have to.

On the flip side, I can't play sports, run, go to the gym, etc. without prednisone. The NSAIDs don't do a ton for me anymore.

My AS pain is almost exclusively in my hips [SI joint / lower back], though occasionally I'll have a chest and shoulder-blades flare.

The Enbrel assistance program is going to pick up my portion of the co-pay for six months [$750 a month], then I'll have to pay $10 a month for the next six months. Amazing deal, right?

Advice? Thoughts?

Best advice I can think of is for you to natter with the Dragonslayer who is pretty well up on medications and alternative approaches. Well worth listening to.

I totally understand where you are coming from. About three years ago I choose not to take the TNF Blockers. My rhuemy at the time told me not to bother coming back to see him if I was not going to take the treatment he felt I needed. At that time I was 30 years old, had two children,and many of the possible side effects run in my family so I felt I would be doubling my chances of developing side effects. I just felt I was too young to jump straight to the big meds first, I wanted to exhaust all other options first. My best advice is to do your research and become very educated. It really is a personal decision that only you can make. You must be prepared to stand by you decision because there are some that will come down hard on you for your decision. Good Luck, whatever you decide.

God Bless,
La Randa

i agree with Randi its a tough choice to make. prehaps you can try a course for a little while. See how it feels.My advice is something I need to do too before I take medication and that is start a pain journal because that is the only way you ever going to monitor what does what and start eliminating, accepting and changing. I find this a very hard thing to do.

I like that suggestion. Thanks.

Its funny because im going through the same problem myself. Right now im turning 23 but have had as since i was young around 11 or 12 but never had it properly diagnosed until i was 20.
I have thought about it alot of figured i am going to start humira for the fact that i really dont want my joints to degrade anymore than they are. My left hip is pretty bad and like you i enjoy sports and its getting very very difficult. I want to enjoy life and am scared to death of having a hip replacement later in life.

Anyways i hope that helped, best of luck.

Hello I am 37 and I just started taking Embrel I went to the Mayo Clinic and the doctor that told me I had AS told me I should take Embrel not only for the pain but it helps stop the progression and if you don't take anything the AS can spread. I am ew to AS so don't know much about the meds but I loved my doctor at the Mayo Clinic and followed his advice but like everyone else said only you can make this choice. I wish you luck in whatever you choose.

Hello bk,

Nice to meet you, and welcome to KA--we're glad you found us!

First off, I'm glad to hear that AS hasn't yet done what it so often does and take over your entire life. Good for you for fighting it as hard as you can, and I'm glad it has paid off with reduced pain so far. I've got just a couple quick points, really:

First, I'll say that your doctor is absolutely right about the prednisone. While it can do amazing things--I know, it's helped me many times in the past, and they don't call it the 'miracle drug' for nothing--it eventually causes side effects in pretty much 100 percent of patients taking it. These can be mild, or they can be very, very severe--mine leaned toward the serious side, as whenever I took a dose of oral prednisone to combat iritis, I would end up with mild to serious edema in both legs and a reasonably bothersome heart arrhythmia. It actually took me many years to put 2 + 2 together to realize it was the prednisone causing that particular heart problem, but now I am 100 percent sure on that. Bottom line here is that, as your doc says, you really do need to begin the process of getting off prednisone as soon as possible, preferably before it triggers any side effects or causes any permanent damage. But, in the old catch-22 situation, if you stop taking prednisone, I'm sure you start hurting, so what can you take instead of the ol' wonder drug? The current answer, of course, is enbrel and the other biologics.

That's one point. The second more directly relates to the question you're asking here--what options do I have if I don't want to start the biologics at such a young age? I can't remember already who left you this advice, but talking to Dragonslayer fairly soon would be a smart move. One of the main options you have at your disposal is the No-Starch Diet (NSD), and nobody is more qualified to provide info on that topic than John. While I've never used the diet myself, it is something I recommend when I post to new folks for the first time because ultimately it is the safest treatment available for AS (as long as it works for you, of course, as it doesn't work for everyone). In addition to getting good NSD info from John, he also is a wealth of information on pharmaceutical options for treating AS and is a pretty smart cookie about the science of AS in general. Now, John would probably be the first to admit that he leans strongly toward using the diet and other natural means to treat AS and prefers to avoid prescription drugs whenever possible, so if this does not fit your current belief system (i.e., you've never really put any stock in Eastern medicine, naturopathic treatments, etc.), you may initially think that John might be too biased toward the natural treatments to give you the appropriate advice about pharmaceutical options. I can state with complete confidence this is NOT true. John's only goal is to try to create a world where anyone with AS can live as painfree an existence as possible, together with a bigger picture goal of helping to create a world where AS does not exist. Thus, I would poke around all the different areas of AS to see what you can pick up about the various non-biologics treatment options and then, if you still have questions, drop John a line. Or, if you can tell that other members are perhaps experts on a given treatment (for example, for the newish treatment plan involving low-dose naltrexone (LDN), Bridget and a couple others are the place to start).

So, ok, that first paragraph deals with how you can find out more info about what options you've got at your disposal right now. I'm going to add a more philosophical twist to your worries about burning through the biologics that might also help you reach a decision in the coming weeks. To begin with, I certainly understand your reluctance to start the enbrel at your age for fear that you might quickly run through all the biologic meds if your body develops a tolerance to them quicker than normal. Some people are able to stay on one med for a very long period of time without developing any tolerance--I was on enbrel for more than 5 years before it stopped working for me--while others here have only gotten 6 months to a year of good relief, if that. Then there are the really unlucky folks for whom the biologics either don't work at all or cause some kind of allergic reaction that makes them too dangerous to take. The bummer here is that you have no way of knowing which of those three types you'll be until you actually start taking one of the meds.

For this discussion, we're going to assume that you are not allergic to the meds and that they do in fact work for you and provide excellent pain relief and overall disease management. Obviously, if that turns out to be true, then the biologics are going to be an excellent treatment option, one you most certainly would use without a second thought--IF you weren't worried about starting them at such a young age. With that concern in mind, I'm going to point you to another thread here in the main forum that was very active just a couple weeks ago--you may have already read it. In that thread, GardenGirl had been told by her doctor that she faced two concrete choices: to begin taking ever-escalating doses of opioid pain medications right now in order to get 5 years of good pain control, after which she would be out of luck and facing a lifetime of severe pain because it would only take 5 years to develop thorough tolerance to opioid medication. Or, she could live the way she is now, which is with very minor pain control, but enough to at least let her live a tolerable (barely) life with likely some pretty severe restrictions due to the pain.

As you'll see if you check out that thread, what GardenGirl heard from a lot of people (myself included) is that her doctor is a) not very knowledgeable about narcotic meds; b) a moronic bag of hot air; c) a pin-headed fear-monger who is more interested in scaring his patients with misinformation than with helping them live the best life possible; d) well-intentioned but dead wrong; e) all of the above. I think you can guess the answer (and I'll add that including d was hard for me to do, but I try to give her doc the benefit of the doubt). In his case, he just doesn't know enough about those meds to give that level of advice (mainly because he's dead wrong), and he completely succeeded in scaring the h--- out of her. The consensus was that GG could expect many more years of pain relief from opioids if they were managed well.

But, GG also heard some other important ideas, in this case, the ones that were more philosophical in nature. The gist of those ideas can be boiled down to a common saying we all know: Live for today, as we don't know what tomorrow will bring. Simplistic, yes, but very, very true and absolutely applicable to your situation. The general feeling in that thread that I think translates well here is that why should you NOT take the drugs that are proving to be the best line of defense against AS for man people just because you are afraid they might not work for you in 20, 10, or even 5 years? One thing almost everyone here has learned is that AS can be a wildly unpredictable, changeling disease that can manifest different symptoms from one year to the next, or even one month to the next. In 5 years, you might not even care that the biologics stopped working for you because your AS has gone into some form of remission. Or, you decide to take the biologics in conjunction with the NSD and find that the diet alone gives you miraculous results in six months, meaning by-by biologics. And even if the nature of your AS does not change, even if you are still actively fighting it in 5 years and battling moderate to severe pain and/or structural changes, it is pretty much a lock that a whole wave of new pharmaceutical options will be available to you. If you read the main forum, you'll see that there are very exciting things happening with new biologic drugs that rely on the amazing genetic research that goes on today; specifically, look for posts on the IL 17 and IL 23 drugs, some of which are in human trials already and showing incredible promise. In addition, with the boomer population aging in record numbers, pharma companies are investing billions in research for any and all drugs that will treat diseases more common to the elderly. As one other person put it in GG's thread, this is actually a boom time in the pharma business for folks with AS.

The bottom line here is that there just doesn't seem to be enough reasons to justify not taking any drug right now for fear that it might burn out and stop working for you in the future. And hey, besides all the stuff about new meds, the uncertain future, etc., there is one other consideration, perhaps the most important one: Quite simply, you are in the PRIME of your life right now! You're at the age where you're developing your career, you're either looking for your lifelong partner or you already found one and are getting ready to take those next huge steps; heck, you're having FUN and trying to enjoy life to the fullest. Isn't this the time you should do whatever it takes to feel your best so you can get the most out of life? IMHO, you bet your sweet a-- it is, but hey, that's just me! Clearly, only your opinion matters when it comes to important decisions like the one you're facing, but now you've got some more info to work with and besides--you asked!

Good luck!

Brad

Hey! Welcome to KA. I am in a similar position. I am 31. I was on NSAID's and got some relief but had to quit due to side effects after 18 months. My rheumatologist doesn't want me to start the biologics yet. I am on the mild side. I have AS throughout my body and my flexibility is poor but the pain is mild. I am going to wait as long as I can. I think better biologics will be out soon.

Hi there, I don't blame you for being reticent to start on something like the biologics so quickly. My advice to you is to take a good look at the potential side/adverse effects, see what the actual instances of them are statistically (not always easy to find, but possible), then decide if it's something you're willing to do.

My decision was to go for it. After years of being untreated due to not being diagnosed, and then getting ulcers from NSAIDS, I decided that the quality of my life was far more important. I am one of those lucky ones who received extremely high benefits from Remicade, without the more frightening side effects.

One of our youngest KAers was only about 10 when he went on biologics. Is still on them to this day (been about 6 years now). Like me and so many others, they gave him his life back.

One other thing to remember is that there are always new meds coming down the pipeline, so if you burn out on one, chances are another has already been approved for use and you can try that one. And biologics may not be the only gold standard option for long, what with the trials on IL-27 based meds.

And there is the NSD. It has worked for alot of people (and the others are right, John/DragonSlayer is our local expert on this). It takes dedication and self-discipline, but if it works for you it can be great. I do a restricted/low starch diet myself, in combination with my biologic.

Anyway, must fly.

Hugs,