Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group biologics as front-line medication??

Hi Rockharrier,
Thanks for this post.
Briefly; at age 27 I started getting neck spasms that were out of control. I actually went to a rheumatologist on my GPs advice, and found the cervical portion of my spine had straightened (1/2 inch taller now). No one told me this might be something else, I was given muscle relaxers and sent home. So the neck thing continued on for about ten years, with me thinking I had to learn how to relax and popping whatever I could get. I had no heads up (ha ha) there was something else going on. Then 5 years of no pain. Then the rest of the back kicked in. But I was very very active, and always assumed I earned my stiff sore body, it showed I was working it. My parents are always sore. My 65 year old Mom still plays power volleyball twice a week, bikes 8 miles a day, and is a ninja gardener. (she's also in the Lacrosse Hall of Fame) and my Dad keeps up. So I just didn't think the pain was abnormal. When my SI joint kicked in this year, I finally went to a new rheumy (I'm 45 now). Well crap.
I'm on Sulfasalazine and in only three weeks felt better enough for me. No morning stiffness and pain localized to SI (still) and, oddly, hallux rigidus (big toe joint). NSD helped for sure. I thought it was great, I'm kind of freaked out by side effects of more powerful meds.
After six months my Rheumy suggested an MRI to see if we were getting the inflammation but said "There is no reason to get the MRI if you aren't mentally down with going on a biologic, if that's what the results warrant" and if she had it her way, I'd have been on them when we first met.
So I'm going to Mexico for 7 days to read (really) and one of the books I'm bringing is Arthritis Without Pain; The Miracle of TNF Blockers to see if it's hard sell or makes sense.

So I'd really like to keep in touch and see what you decide.
Thank you Mig, Kat, and Gerard, for your experience and advice on this stuff. I justify the hours I am silly online with the rational advice I get from y'all
cc

that book sounds interesting,

please give us a book report when you get back,

and enjoy your time off,

sue

Yeah, interesting sounding book.

All - thanks for the feedback. I think a large part of my hangup with the biologics is just fear, so it's good to have feedback from others that help demystify it and give me incentive to try them. Not that I don't believe my doctor when he says that they are the best treatment, but he doesn't have the disease or use the drugs, so there's a certain power in actual user feedback and reassurance.

I'm going to give sulfasalazine a fair try. By all accounts, it takes 1 to 3 months to ramp up to the proper dosage, and then for the drug to really kick in, but I'll give it 6 months or so. If I see the improvement I want, then I'll stick with it, but if not, it appears that biologics are my next step. And it's a step I'm getting more comfortable with.

My Rheummy suggested the biologics first. I had been on steriods and indocin for other things with no relieve. Also I had a scope to see if I had hidden stones (had gallbladder removed 2yrs before) I didn't, but he had found so many erosions it would have been dangerous to put me on NSAIDS. Also the Rheummy had told me the disease had progress past the point that DMARDS would have any effect. I was on Humira and Enbrel for 5 months. Unfortunitly for me they didn't work. All medication have risks. And all medications have side effects. However, If the SSXZ works do it. If it don't try the Biologics. I say do what ever works and your comfortable with. I am doing the LSD and notice the difference when I do eat starch. Keep active. I wish for your AS to stay minimum. Good luck.

Wow. That's practically my exact story:

- Male, 29, HLA-B27 Positive
- Unpredictable symptoms since 2004
- Self medicated with Advil and Valerian Root
- Multiple chiropractors and massage therapists
- Several monster flares in 2008
- Official diagnosis Dec 2008
- Absolutely zero permanent damage at this point
- Rheumy wants to hit it hard with biologics first thing

All that is to say that I have had a relatively similar path and my Rhemy is also very interested in using biologics as a front-line medication. In fact, my first Enbrel shot is tomorrow!

All the best and I'll keep you updated on my progress. Please do the same.

Hi! I'm 31 and was diagnosed with AS mid 2008. I had had symptoms for a min of 7 yrs. I was started on diclofanac and ssz. With no prevail. Kept with the voltaren and went to mtx and enbrel. Which seemed to really help but it brought my immune system so low that I couldn't continue enbrel and mtx. I gave up on mtx and continue with enbrel. I'm not sure if that is the answer. Yes I'm better if I can stay on them but problem being the enbrel brings my immune system so low that I then get sick and have to stop the biologics. Then when I'm better I start the biologics again. But with the gaps in meds I am continuously going into flairs. I caution you in these meds. They r wonderful but can be challenging so make sure you have a close close close relationship with your dr. I'm now looking for a new dr that will listen to me and understand my needs. As you know being in a flair is physically mentally and emotionally challenging and you need help sometimes getting through these times. My dr won't even give pain meds. He tells me to go to the ER. As if we all have the money for that. Especially being on biologics. $1600 a month is costlyfor me! I really just suggest using caution. I hope to find a dr that can and will help me and send me down the right path. I wish the same for you too!! Keep me posted as to the "newest" info.

Hi Paul,

I didn't have time to read all the responses you had already received before I started to write this, but I did sue22's post, and she was right on the money about this coming down to a philosophical difference in the way doctors approach treating KA. I'm actually kind of tired right now and don't have much left in me before I need to crash, but I'll throw in my two cents worth very quickly here.

Bottom line for me is easy: I absolutely would switch off NSAIDs and replace them with one of the biologics if given the choice and with all things being equal. By that last bit, I mean once you take into account any allergies you might have, or take into account significant occurrences from your personal medical history that could indicate maybe you should stay away from the biologics. Once you had done your personal due diligence, to rob a term from the business world, and you had received the green light from your doctor and had made up your own mind as well, then yes, I repeat that I would absolutely go with a biologic over an NSAID as the frontline treatment for AS. My answer might not be as clear for the DMARDs or other non-NSAID drugs, but NSAIDs have been unequivocally proven to cause gastrointestinal effects in the vast, vast majority of people who take them (I stopped myself from saying "100 percent of people," but honestly, that's probably accurate). if they are taken long enough. Even today, NSAIDs kill thousands of people every year due to internal bleeding in the GI tract. There is no doubt that they have helped hundreds of millions with AS and RA--including me, as I took the highest dose of indomethacin for about 20 years and could not have lived without them--but at such a high price that most people would have been much better off if the biologics had existed then as their frontline drug. (And yes, you can count me among those people who did have a GI bleed while on an NSAID, but luckily mine was not fatal and it was isolated enough I was able to keep taking the indocin; as I said, I simply could not live without it and it was all medicine had to offer me back in the day.)

This is not to say that the biologic drugs are side-effect free--of course that is not true. In fact, some current and past KA members have experienced very serious side effects while taking the biologic drugs, all the way up to cancer, including leukemia. You and your doctor really must review your entire medical history and he must assess how he thinks they would affect you, and ultimately you will face a tough decision about whether or not you should take a biologic. I have said many times here at KA that if I had known about the no-starch diet back in my early 20s, before my AS had caused any of the terrible and permanent structural damage it has caused now, then I absolutely WOULD have fully committed to the diet to see if I could achieve the amazing results so many others here have experienced. Because you are still young and your AS is in its early stages, I strongly urge you to check out the NSD forum here at KA and to really, really think about trying the diet. I know it can seem like you have to give up a lot of good food, but think of what you potentially get in return--a drug-free treatment for your AS that comes as close to being a cure as anything that currently exists. If it worked for you, you'd never have to worry about terrible side effects ever again. At the very least, you should read up on the NSD or LSD (low instead of no) before you make any decision.

That might not sound like the "short" answer I said I would be offering in response to your question, but believe me, for such a complex and important topic, it is actually a very short answer. Your question is on the short list of questions that lie at the very center of living with AS, so it's fair to say that you won't be receiving any definitive answers here in this forum. What you will receive is a lot of responses that come straight from the heart and that will give you information you can't get from any doctor or medical textbook.

Good luck Paul.

Brad

Very very interesting article here:

http://arthritis-research.com/content/11/1/208

To date, this is the most comprehensive summary of current A.S. research I've come across. Sadly, I can actually understand most of it too. Isn't funny how having a chronic disease increases your medical vocabulary?

thanks, very good article, printed out, part of my small collection of papers on AS.

sue

Hiya,

there is no cure for AS the holy grail is remission and not many find that.

AS seems to go with most strange episodes and then a full on active disease that is harrowing to say the least for many. Others have a less painful but damaging or ankylosing form which is more classic.

The idea is nsaids are used to help mild forms, and when these are not enogh start the stronger drugs. This may be the older dmards methetrexate or slazapyrine ( which are not helpful to most ) or the more expensive and more specific biologics. None of these are cures and a response worth continuing these drugs is 20% reduction in pain stiffness and fatigue.

All drugs carry risks, the ones we use from side effects or suppression of the immune system. So you have to be on your toes with infections and changes. My rheummy spelt out to me the risks of the biologics after she lost some patients. However over time we realised that I'm doing quite well on methetrexate lucky for me!

The good news is you have been offered the drugs, if you choose not to now that's ok, at least they are on the table if you need them.

The idea behind these stronger drugs is to stop/prevent/lessen/slow down the damage and for you to lead as normal life as you can. In the future there will almost certainly be better more specific drugs with less side effects.

Most Dr.s nowadays are less likely to suggest long term use of the nsaids, and you will find many here who beleive they are positively the wrong way by experience.

Try some of the altnatives I beleive in trying the no/low starch diet which you will find, it can help some more than others especially early in the disease.

Good luck

Dave