Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Treatment to aggressive???

Hello to all!!

Just looking for opinions.. After a few meetings with a rheumatologist, who seemed to think that A.S. was probably NOT the cause of the pain and discomfort I've been experiencing (I thought she was wrong), I've been officially diagnosed with A.S.. Based on what I learned on this site and a few others over the last 8 months(when I heard of A.S. for the first time), and the signs and symptoms I have/had (iritis, hla-b27 +, unexplainable foot, hip, neck and back pain), I felt pretty sure of what was causing my issues...A.S.

Now, my question:
I was prescribed indomethacin for 1 month and it did not accomplish anything for me.
My rheumy changed my prescription to arthrotec for the last two months which does often seem to help, but it seems to be helping less and less frequently and the pain in my SI joint has increased dramatically in the last 30-60 days, I've devoloped a stiff feeling in my neck, and the middle of my spine is more painful and stiff then ever before.
My rheumy told me on Wednesday (my diagnosis day) that she was going to apply to my insurance provider to get me treated with Remicade, and I am concerned that I haven't tried some other treattment measures that aren't as agressive as Remicade.
Should I be glad to have a Rheumy who is willing to get agressive and try to attack A.S. quickly instead of making me go through allot of other treatments like it seems most of you have had to do? Or should I be looking to try some other treatment measures that don't seem to have as many potentially serious side effect as Remicade? The thought of suppressing my immune system with Remicade seems a little scary, and the fact that there are no long term effects known because the drugs are so new is disconcerning, but so many people seem to have good results and I'd like to get this pain under control.

Sorry for being longwinded, but I'd really apprieciate some input from all of you experts in here, because I don't feel that a Dr without A.S. can have as valuable an opinion as a person with A.S. Thanks for any input.

Chris,

First, let me welcome you to KA. You came to the right place for questions and to share with people who will bend over backwards to help you.

I think you should research, research, research and do more research on any kind of meds your Rheumy wants you on. I think it's your decision in the end. Remicade does seem to be a little aggressive since you've just been dxed. There's many other meds with fewer side effects you could try first. Being able to tollerate the meds is another problem for many of us. You don't really say how aggresive your AS is, so it's a little hard to know what degree of pain your in.

There's alternatives such as diet (check the NSD, LSD forum) that help many of us. Exercise is important as well, although some of us are so fused exercise isn't an option.

Anyway, I know you'll get plenty of good advice from several who have been through a lot more than me.

Again, welcome to KickAS.

Fred

"It's not the size of the dog in the fight....It's the size of the fight in the dog." Mark Twain

hi chris..

have you ever tried vioxx? ask your doctor if you can try vioxx while you are waiting for insurance approval. (it takes a long time to get approved.) vioxx may be all you need to control the sacroiliac and spinal pain. it's the only anti-inflammatory that has worked most effectively for me to control stiffness and pain. it comes in doses of 12.5 mg, 25 mg and 50 mg. (i take 50 mg/once a day)

i'm also been on remicade for a couple of years now. and it works like a dream. so i think it's a good idea your doctor is looking at it. you will get tested for tb and other infections before you are allowed on it so they take do precautions. i haven't had any infection problems with remicade.

please talk with your doctor about your concerns. i'm sure he or she will welcome your thoughts.

leslie

Hi and welcome to KA! Sorry to hear that you have AS, but I am glad that you finally know what is going on and can get treatment.
I have to agree with you...there is no better way to get info than straight from the horses mouth. This is why I chose to do my book the way I am, so others can learn more about AS from our experience and what it's like to have AS from people who live with it day after day. I always said that the info here at KA is better than 100 doctors put together. It wasn't until I came here that I learned so much. And even after I learned a lot, I chose to stick around for so many years, because the support is awesome!
Anyway, as for your questions. Chris and Leslie has given some great advice.
Research and learn as much as you can about the drugs and talk to your doctor about how you feel. Open and honest communication is one of the best things to have with any and all of your doctors. And if you practice this right from the beginning then you'll always know where they stand and them you. A good doctors visit is one that never leaves you guessing when you walk out of the office.
Having an active role in your own healthcare is the best way to go. That's why researching and learning as much as you can about AS and the treatment options will help you in making good decisions for yourself. Also, when you don't totally agree with something your doctor says, he or she will see that your knowledgable enough to know what is best for you.
No matter what drug you choose to try, they all have side effects, but some not as bad as others. Like Chris said, how aggressive you choose to treat it depends on how aggressive the disease is right now. Even though some people choose to take more aggressive steps before the disease gets to that point. But one never knows if it ever even will get aggressive enough to warrant more aggressive treatment...it's a chance some take. That's why learning all the options and knowing your body well is important.
Whatever your decision I hope it works well for you.
Hope to see you around here often...I'm sure the more you hang around here, the easier it'll all become.
Hugs,
Lisa

Hi, Chris:

I'm not sure of the status of Remicade for use against AS; Enbrel was approved this past July. This may be the reason your doctor is slow to find the obvious; certainly you do have AS, but (possibly) RA is treated using Remicade more often than is AS.

You might have a very good doctor willing to give you a DMARD right away instead of following failure after many years of NSAIDs, which will accelerate the progression of AS.

As already mentioned, please check out the NSD forum. Diet has been an effective treatment for many of us, and should be employed as adjunctive therapy along with any other drugs; their effectiveness is much more likely to last longer, and the potential for reduced dosages could also assure that there are only limited drug side effects.

Good luck to You,
John

Thanks for all of your input...

I am not sure how to quantify the severity of my pain because I have no way to know how it feels to anyone else, but the way I feel varies dramatically over the course of a day. Most days include times when I feel like I could run a marathon, and other points in the day where my si joint hurts so much it is difficult to stand up and I get around with a pronounced limp.
I have not been presribed vioxx as of yet but I did have a vioxx one time (I know I wasn't supposed to take someone else's prescription), and did experience significant relief for a period of time after taking it. I did discuss vioxx with my Rheumy and for whatever reason she decided to try arthrotec and that's where I am today. I have not tried very much at all considering how many potentially viable treatment options seem to exist. From herbal remedies, to diet, to excersise, to traditional medicine and not-so-traditional medicine, how do I make an intteligent decision on a plan of treatment. Of traditional medicine options it seems to me like remicade (or all tnf inhibitors) are the most promising development in the treatment of A.S. in terms of its potential ability to actually slow or stop the A.S. progression altogether.
This whole deal is a little (or allot) scary... As of this point nothing has fused, so one side of me thinks,"be as agressive as possible to try to avoid ever fusing at all, and the other side says"be careful..you don't know what is going to happen if you take this medicine...you could feel worse then before or be more sick than before..plus you may never fuse anyway so why be so aggresive?"
I am sure this is only the beginning of many complicated situations I will be faced with as I deal with this condition, but with valuable input from people like all of you who have lived it, I am sure I'll be able to handle it fairly well!!
Thanks to all!!

Chris

Hi Chris,

I certainly understand your concerns. If you are not ready for remicade then ask for sulfasalazine first. It is usually the first drug offered and if it works then maybe you won't need to progress to the remicade. If you add the NSD to the mix possibly you will get the disease under control. Hard to say but it is a decision only you can make. Be informed and know what you want before going to your appt. Myself I have been on sulfasalazine now for 8 months and it has helped but there is still lots of room for improvement so I am ready for the stronger drugs. It took me awhile to get there but I am ready. As someone here said it is kind of a personal evolution. At some point I want some pain control before I get too much mechanical damage. You will know when you are ready. Until then good luck and keep us posted on your progress.

Deborah

There is no drug stronger than a good attitude.

Have your Dr. submit it to your ins. co. as Rheumatoid Spondlytis instead of A.S. That is how my rheumy has gotten Medicare to pay for it. J.R.

My opinion is that every day your condition is not under control you are incurring more mechanical damage to your body through inflammation. NSAIDS can only relieve inflammation (at a cost to the body), not prevent it, and do not prevent damage. Remicade has been helpful to many; however, there are a lot of options out there, such as Enbrel, Humira, and what I'm on, Arava, which is also a new disease modifier. Do your research but don't reject these new treatments out of hand. I am in remission but still have a lot of mechanical damage (25 plus years of inflammation before Arava got it under control) which causes discomfort, especially at night. The new DMARDS prevent the inflammation, thereby preventing damage, and there is some evidence they may also repair some of the damage already there. Also check into diet. The NSD didn't do that much for me, I try to stay with the LSD, it is a healthy diet which is a good thing whether or not it directly helps the AS problem. Keep an open mind, do your research, but remember that this disease can wreak havoc on the body on so many levels that if something is available that would forestall this, then perhaps it's worth a try. I have a fused foot, the soles of my feet are numb, I get leg pains down the front of my right leg, my neck is partially fused now, my SIs, the list goes on. I wish Arava had been available all those years ago before I had the damage.

Hope this helps

Cheryl

If you can't be a good example you'll just have to serve as a horrible warning.
Jennifer Cruisie

Dogs don't want to know about every other dog you've been with