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

If I had it to do all over, I would have opted for aggressive treatment. AS caused more and more damage as I tried 12+ different NSAID's, then sulfasalazine and MTX. I didn't start Enbrel until after I was almost bedfast. It turned my life around overnight. I only wish I could have had it BEFORE the damage was done. Even my iritis has settled down with the Enbrel.

But, as already mentioned, research everything thoroughly. Then you can make an informed decision regarding treatment. Some have found relief with the NSDiet, it's worth checking out.

I recommend exercise, especially lots of gentle stretching; hot showers; massage (muscle rubs are nice); and daily visits to kickas.org.

Hugs,

Cindy

I am only one; but still I am one.
I cannot do everything.
But still I can do something;
I will not refuse to do the something I can do.
Helen Keller

Thanks again to all of you who continue to provide me with valuable insight.
I am leaning towards being treated with remicade(I think) based on what I've been able to learn so far from you guys, and a few other web sites that had some good information. It seems, if I may have an oppurtunity to slow or stop something that could advance into a dibilitating state, that i should take the chance. But there are still quite a few serious side effects of this treatment, and who knows what I may be predisposed to? I know they are running TB tests and chest x-rays, but are there any other tests I should be having to see if I am predisposed to anything else??

If anyone knows of any tests or anything that should be checked out prior to treatment, let me know.

And hopefully I don't make my mind up and then have to fight it out with the insurance co...

We'll see!!

Hi,

Welcome! Sorry to hear about your condition and the grief it's giving you. I'll be brief but I've had enough at the computer today and I'm getting sore.

I think you need to understand what's driving the condition. Some of us have an underlying GI problem which often niggles away and at other times it's a bit more obvious. Some of the guys diagnosed with AS later on get found out with IBD.

So you need to know if that's your "root" problem or not. Try the NSD for a few days, and then go LS and see what happens. It's no miracle cure but you notice that things are better. Then try re-introduing a really bad food, and see what happens, lower back, SI usually in me. I stubbled on the diet component years ago, after doing an elimination diet for IBS but we did n't realise it was starch, more white flour! Me dumb potatoes were indicated as well.

If so the last thing I would try is an NSAID of any type as they typically accelerate things.

What I would do is ask the rhemmy why are you proposing a DMARC, on the grounds of aggressiveness? etc.....

I think alot of Dr.s now respect patients that ask these questions. Listening in on some of the calls my rhemmie gets, things like being a responsible patient also have a bearing on prescribed treatments!

Good luck,

David

Hi Chris, and welcome to KA!!

I've been dx'd for two years now, living with AS for about 15 years that I know of. Since my dx, I've been trying to treat it holistically, using herbals, exercise, supplements and dietary changes. For myself, I've found that this has gone only so far and I've been taking more and more advil over the past few months. Now, I'm on tylenol arthritis three times and day and vioxx twice a day. Hate the idea of the vioxx, but it's what I have to do right now. As my rheumy said, we have to get my pain levels under control and then we can decide what to do.

However, that said, I would kill for a rheumy who would try to get me one of the DMARDS. I already have SI and thorasic involvement, plus a wee bit of hip, showing on my xrays. I can feel my neck, shoulders and hips becoming more and more involved and want something that will nip this thing in the bud. But I can't get it until I've gone through the GI tract eaters. I asked my rheumy about the DMARDs, but he felt that they were too little known at this point to prescribe as a first course of treatment. I disagree completely. I want this disease stopped before it does anymore damage. I still have quite good range of motion, and I want to keep it that way.

But, I can't get a DMARD approved by my benefits company without my rheumy's support. So, I'm on vioxx and whatever else first. Hopefully, it won't be too long before he realizes that my longterm prognosis and potential for damage is more important than anything else and he'll give me the DMARD I want.

I say go for it, Chris, but that's up to you. We all have to treat this thing in the way that suits us best as individuals.

Hugs,

Kat

Hi, Kat:

I don't remember whether you have experimented with the DMARD sulfasalazine. It is best to use the enteric coated (Azulfidine-EN) type, and it has been approved for use against AS for many years.

Speaking of having blood tests done, I hope that you are because mixing NSAIDs and acetaminophen can be real trouble.

At least your rheumy knows that NSAIDs are not a long-term solution.

Good luck to You,
John

I hope he knows they aren't a longterm solution. This is my wish (to go on a DMARD). Since I've only just started letting him do his job drug-wise, I'm not exactly sure what his plans are. I'd like to think that he knows what he's doing, anyway. I have to start trusting someone other than my chiro with this thing.

We're going to see how the vioxx works and then I may see if he'll give me the sulfasalazine. I've been looking into it. Gotta follow protocol tho, eh.

Thanks for your input, John. I appreciate it.

Hugs,


Kat

PLease, I beg you, listen to John. What happened to me should happen to NO ONE.
It took ages, and I mean ages of serious serious pain to recover from leaky gut syndrome. Everyone said take an asprin, ibuprophen, etc....

the American Academy of Rheumatology has a "treatent tree" as all societies do. what is the right thing to do in what order.

THE FIRST line intervention/treatment for AS and ALL I repeat ALL erosive arthritis, is DMARD first..........
NSAID last..........


They used to years ago use NSAIDS first, then DMARD's last, BUT THAT DID NOT WORK.

So it is completly inverted. Your Dr is doing it the old timey way, like my first dr did. This is not current thinking in the field, period. If you are happy with it, I am happy for you,and frightened for you. But I know frst hand what happens to you when they use out date protocols and meds,,,,,

this should be one of the question in the what to ask your dr page...
do you attend current scientific meetings/obtain cme's
do you tend to follow the AAR guidelines/treatment tree for erosive arthritis?
what is your personal treatment tree for this disease....


Ifyou continue NDAID's everyday, I urge, beg, you to check in with John, DragonSlayer, he might be able to give some tips on minimizing the damage. I folow him closley, my Knight in shinning armour, I had no where else to turn, he took my hand, and lead me out.

I am praying fr you honey.bless your little heart. You sound so sweet, so trusting....
I want a tatoo of the chinese symbol for trust no doctor! I lie, I love my new dr he is the MAN. He went right to DMARDS and the big guns too

Best to all
Shu
aka
Bitty Buffy
"So I will walk through the fire, for where else can I turn?"
"Drawn to the Fire"

OK, is this true in Canada too? That DMARDS are now the first line of defense? I've got to ask my rheumy about this. Damn, left my pain journal at home and can't write it down!!!

Kat

I dont know about in canada honey, but I do know yall are usually miles ahead of us in allowing drugs, protocols, etc.....like remicade and enbrel were ok for AS in canada before here for sure....

I do know, AS can become entractable, meaning, you wont shut it down or slow it down when it gets to that point. It wins.......

Lets say you had thyroid cancer, but non hodgkins, over 44,000 cases are reported in the us every yr, one of the most common cancers.

The dr takes out the tumor, and gives you chemo, do you do radiation? Some do some dont.but if ONE SINGLE CANCER CELL LIVES< AND MIGRATES< YOU DIE
period end of story, no do overs, no second chances, no time outs..you bought it, you own it.
SOme say, it is too aggressive, but I wonder if it was their own child, would there be anything too aggressive. How can you can cure/treat a disease and be too aggressive? You cannot is you adhere to the first hyppocratic principle, first, do no harm........

Ask him this, will he care for your family if you get the heart defect that comes with AS? Will he step up if you are struck by the urinary troubles, or have to have multiple plantar surgeries and cannot walk? He will say thatis not his to do, then the decision about what is aggressive, or to be aggressive rather, is not his to make alone.

I wigged when I got this, total freak out, because I have seen MUCH of it in my work, and it is one of the very very few times a world class surgeon will look at someone with true pity. So I was afraid. I saw my drs have more pity on AS that a rare eye cancer..they said cancer you can beat, AS is a life long battle, in a war you cannot win, only hope NOT TO LOSE, and these poor people have their work cut out for them........
i was shamed, saddened, and moved.

I hope I am not being too maudlin honey.....but Drs that give patients the aggressive speech, in my book, that says, it is too much cost , somehow it will have a negative impact upon my practise, it is over my head, or too much trouble, that is what I hear......and it really perturbes me. The American Academy of Rheumatology has some criteria they are supposed to use in the US, differential diagnosis, treatment tree, etc......arm yourself with excellent weapons, are ya near McGill University? They have a kick AS medical team.if I was in Canada, I would go there for something called a consult.

Are you familliar with a consult honey? It is not getting a new dr. It is another dr giving his input to your dr, kind of another set of eyes looking for the lost keys? yes?
Good Drs love consults, because they believe they are right, and they welcome someone else to comfort the patient with a concurrance.

I can probably get you a referral at McGill, I can check into some other places for consults for you if you like. I am retired ophthalmic med technologist, and one of my old bosses is from Canada, still visits a bit too. I will give him a ring if you like sweety.
Sorry bout the soap box, bad information is worse than no information as far as I am concerned.
I am praying for you, a special prayer.......GET THOSE DMARD"S prayer. It worked for me.
Much love to you honey....
Shu
The Slayer, lol a family joke honey, I am not a nut case, well, maybe a little bit......if you ask any of my kids or students they might agrue with that statement.

It is easy to say get off the NSAID's, but how do you do it? I have tried several times only to have an escalation in pain. I am on the DMARD sulfasalazine( 8 months) which has helped but there is still much room for improvement. The diet hasn't worked magic for me as it has for others. What is a person supposed to do??? At my rhuemy appt yesterday she said try ibiprofen and exercise every day and come back and see her in 2 months. She said the newer drugs havn't been out long enough to know the long term side effects to which I couldn't argue. I was ready for Enbrel but she said not yet. She didn't say never but she said not yet. So I am basically back to square one. I feel inbetween a rock and a hard place which I am sure most of us are.

There is no drug stronger than a good attitude.