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If you feel you need serious meds then I would just encourage you to not drive yourself crazy wondering what if because it's all a gamble and no one really knows which choice would be best in the end. Do your research, of course, but there's no way to really know unless you just take a leap and try some treatments. I only take nsaids and sulfasalazine but I've read a lot about inflammatory arthritis and I have the following thoughts, for what they're worth, given that I don't take these meds:

Is methotrexate appropriate for as treatment? If it is, I'd choose that before biologics only because it has been around longer and the long term effects are known. I read a study about ra that found triple therapy with methoxreate is as effective as biologics but I'm not sure if that's the same for as. I'd at least inquire with the dr about this if you haven't already.

From what ive read about biologics, they suppress the tumor inhibiting part of the immune system so if a cell in your body starts to divide uncontrollably then your immune system may not be able to stop the cell before it starts causing problems (cancer). But the biologics don't actually cause the cell to start dividing uncontrollably, many factors cause that from genetics to environmental triggers. So family history and lifestyle would factor into the decision on whether ones risk of cancer when taking biologics is high. And I have read that people with autoimmune diseases have a higher risk of some types of cancer anyway, so there is that.

Biologics and methotrexate are scary but they are also life changing and I would use them if I was starting to have joint damage. We don't have the luxury of making perfect choices given the hand we've been dealt, so we just do the best we can. Good luck! Sry this is so long and maybe not helpful if you already knew these things....


Everything is okay. Trust yourself, and do not live from a place of fear.
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Very_Addicted_to_AS_Kickin
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Methotrexate is very effective in treating RA, but ineffective in treating AS. There were several reports on this including one from EULAR. Azulfidine (Sulfasalazine with the gut protector) has been found efficacious.

As advised, need to discuss fully with your rheumy and your doctor.

Take care -


MollyC1i - Riding OutAS
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Fifth_Degree_AS_Kicker
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Actually I did receive a known serious side-effect from the drug.

So on second thought don't listen to me. I just tend to forget about it easily with my selective memory.

Also they know all these risks well ahead of time with dose defendant testing well before the drug is even developed.

The general thought is that considering their power and safety profile they are one of the most benign medications known to man albeit imperfect.

It is one now that I'm willing to play Russian roulette with. Thankfully it only reappears sporadically and can totally forget about it. This may change when my TNF-a levels get readjusted but I suspect they will eventually die down and I think in my personal situation am not at risk of progression for the remitting nature of it(and this is because you can either develope MS or (pre-ms maybe?) if that is what demyelinating neuropathy is and what the lit says about this is this is usually temporary and reversable by just stopping or lowering the dose of the TNF blocker.

Btw all my doctors like MTX then 6mp or aza or probably csa as an alternative and there is general thought MTX DOES work on Spondy. Just not well. It's working on my neck and bowel and shoulder a lil. And it makes sense the neck is less axial IMO. Actually maybe it's the humira too everything is breaking up and expanding. This enteropathic thing always likes to throw me for a new 1. Spine is erecting and going to the back of the joint. After getting all that crap out my body. Sry

Ok I'll put the keyboard down there before going on another tirade.

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Very_Addicted_to_AS_Kickin
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Just one of the snippets from a ASAS/EULAR paper

http://ard.bmj.com/content/70/6/896.long

Disease modifying antirheumatic drugs
▶ There is no evidence for the efficacy of disease-modifying antirheumatic drugs (DMARD), including sulfasalazine and methotrexate, for the treatment of axial disease.

▶ Sulfasalazine may be considered in patients with peripheral arthritis.

Comment
This bullet point has remained unchanged. After the last Cochrane review54 there were two new studies on sulfasalazine,55 56 but the experts did not find that these provided sufficient new information to change this bullet point. The results of the first study, which was performed mainly in patients who had early spondyloarthritis, are conflicting,55 whereas in the head-to-head trial against etanercept there was no placebo group.56 Overall, a marginal positive effect of sulfasalazine with a rather limited effect size in AS cannot be excluded. Therefore, no strong recommendation can be given to support its use but the rheumatologist may decide on a trial of sulfasalazine for a limited period, usually not more than 4 months, after which further benefit is unlikely. The majority of the studies suggest some efficacy of sulfasalazine in patients with peripheral spondyloarthritis and in the prevention of anterior uveitis. However, etanercept was more efficacious in the active comparator trial.56 Finally, there is clearly no reason other than economic to recommend the obligatory use of a conventional DMARD in AS before anti-TNF therapy.

The data on methotrexate are still very limited and no positive recommendation can be given on an evidence basis. After the last Cochrane review57 there was one new open-label study with a high dose of methotrexate given subcutaneously,58 which again demonstrated no effect on patients with axial disease.

Most rheumatologists will try methotrexate in patients with predominant peripheral spondyloarthritis, but no evidence-based recommendation can presently support this.

Strength of recommendation: 9.4±0.2.

------------------- ##

There are many more references to the rather poor results shown from using Mtx in treating AS. Whereas, Mtx is a 'first-to-go-to' drug in treating RA - and, to add Azulfidine *to the MTX as the two pronged approach being and showing the best results.

But is up to the prescribing doctor and what is found best for the individual patient - nowt is set in concrete <smile>

Here's another -

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1856012/

No efficacy of subcutaneous methotrexate in active ankylosing spondylitis: a 16&#8208;week open&#8208;label trial
H Haibel, H C Brandt, I H Song, A Brandt, J Listing, M Rudwaleit, and J Sieper
Conclusions

In this open study, methotrexate did not show any benefit for axial manifestations in patients with active ankylosing spondylitis beyond the expected placebo response.

http://www.ncbi.nlm.nih.gov/pubmed/17054209
"There is not enough evidence to support any benefit of MTX in the treatment of AS. High-quality randomised controlled trials of longer durations and with larger sample sizes are needed to clarify the effect(s) of MTX on AS."

And there is more stuff here if anyone wants to dive into it -

http://www.ncbi.nlm.nih.gov/pubmed?linkname=pubmed_pubmed&from_uid=17054209

-------------------- ##

This aint a diatribe, it is a discussion based on published research papers on the subject of the efficacy of methotrexate in treating AS - possibly even the jury is still out, but a reasoned discussion is always useful. The platform must always be open to questions and we patients always have those questions...!


MollyC1i - Riding OutAS
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Very_Addicted_to_AS_Kickin
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Originally Posted By: ineptwill
I use Enbrel................fabulous.


I use Humira……..brilliant! smile


I tried other things before I could find a doctor who would dx and treat me.

The LDN (low dose naltrexone) did help my enthesitis a lot, but not much else.

Aleve was good for a day or two, but then the gastritis and edema kicked in.

I do eat a "healthy" diet, take supplements, etc (see below my name), but honestly they only help, don't solve the problem.

I was hoping I could do it with LDN and supplements and take prednisone every few months for flares, but I was needing the pred too often.

I've tried various diet things, that doesn't seem to be it; though staying away from dairy as I'm allergic / sensitive to casein is part of the helpfulness.

I and my rheumy do think allergies play a part for me, and so trying to deal with those in hopes that it will help the autoimmune / autoinflammatory stuff.

But really, the Humira has been the thing that has really changed things for me.

I still flare some, but nothing like before.

I still need pred some? But for the last year, only took it in august (seasonal allergies? are my worst flare trigger).

So far, no side effects.

I still seem to have a really strong immune system. I've had 2 or 3 head colds since being on the humira and no sicker than I used to get. and don't get sick more than before either.

I do take vitamin C (rheumy's orders) to boost my immune system. And I think the LDN does it as well. I try to eat right, sleep right, exercise, etc….all the things to keep my immune system healthy…..and so far, Humira doesn't seem to lower it in general (only the autoinflammatory part seems to be "fixed").

Cancer doesn't run in our family, nor MS. And I've been on the Humira almost a year, so think things are good here.

Everything has risks and benefits; gotta weigh them. Everyone has to figure it out for themselves.

When I was making the decision, two voices were in my head….."changed my life" and the other "dangerous"…."changed my life" won out for me, I wanted to see if it would "change my life", I wanted that opportunity. Plus you get to a point where you are in so much pain and so dysfunctional that you will try things you might not otherwise try. I think if they weren't so expensive, the "danger" angle wouldn't be so emphasized…that's just my opinion, but it seems like a good "excuse" to keep people away from the biologics.

Read the packaging info, look at the stats, see how many people get the things that are risks, judge for yourself.



sue

Spondyloarthropathy, HLAB27 negative
Humira (still methylprednisone for flares, just not as often. Aleve if needed, rarely.)
LDN/zanaflex/flector patches over SI/ice
vits C, D. probiotics. hyaluronic acid. CoQ, Mg, Ca, K.
chiro
walk, bike
no dairy (casein sensitivity), limited eggs, limited yeast (bread)
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Yea.. I'm sure I've read all those studies before and I agree I don't think MTX would ever pass a study. The main thing here though is reading between the lines. Actually that is 1 of the most important things in reading medical literature. Only the obvious is usually bluntly available while the more specialized stuff is left to be figured out in 1 way or another. This is both the beauty and horror of medicine.

The very fact that there are SO many studies and debates regarding on IF MTX potentially works on as, spa or early spa says a lot, esp. In this instance. Furthermore I think combination therapy with this drug causes it to reach the axial skeleton through the same pathways.

Finally there are reports of it working in the lit(mostly as a first line therapy) and a lot of publications suggesting it. And that's just alone and at the anti-inflammatory doses(low dose). They know all this stuff from the lab and the specifics almost never make the lit. as I've noticed.

I will try to track down some links in the next few days. I really try to stay away from that stuff now but have a bunch of stuff to go through eventually when I have the time.

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Oh and sue most ppl with AS are more susceptible to MS. Really the stat I saw showed a statistic with IBD but are they even exclusive of each other? I'm sure I guess but I would assume more rarely than together. Also the risk is really low as you said. And to be even more technical those side effects listed are to anyone who uses them they are not specific to any disease or patient population within the disease.

ALSO 1 thing I did get from dr reveille which I already knew, actually his parting remark as it was was TNF blockers or anything right now DO NOT work on the fatigue and all of that stuff. I already knew this, well wasn't completely sure but in 1 way or another they don't really work like that.

Last edited by Tnate; 05/16/14 02:44 PM. Reason: even
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Very_Addicted_to_AS_Kickin
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Reveille - a good rheumy of international repute.

This might interest, just in (!) from BJC Health Care, Sydney Australia - Dr Lim is the director and BJC Health is a 'dynamic, multidisciplinary group clinic which focuses on providing comprehensive, coordinated treatment solutions for patients suffering with arthritis & related diseases. They are now a team of over 30' (wish we had a centre like this...this guy is ace) :

http://bjcconnectedcare.com/2014/05/low-dose-methotrexate-myths-realities/

Click on the right upper corner of the linked article, then it downloads in a pdf file. Good article.

Yes. Mtx 'was' indeed the DEMARD choice for AS. See this link, 2004, extolling the efficacy of Mtx for AS :-

http://www.ncbi.nlm.nih.gov/pubmed/15290737
MTX is safe and effective for patients with AS. Longterm studies are needed to evaluate the permanence of its benefit.

Shortly after I found KA - 2004, 10 yrs ago - there was much discussion including concerned discussion here on KA. It is only relatively recently that Mtx seems to have been put to one side, this since shortly after the explosion of ASAS/EULAR - from the top rheumies pooling their observations and evidence of target to treat / treatment targets. Medicine revolves - and who knows, Mtx might even been brought back again as a 'treatment of choice' !



Last edited by MollyC1i; 05/16/14 03:23 PM. Reason: to qualify MTX link

MollyC1i - Riding OutAS
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Thanks for all the info, Molly. It's good to know about the methotrexate stuff. This is why I love this site, so much good info and discussion.


Everything is okay. Trust yourself, and do not live from a place of fear.
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Fifth_Degree_AS_Kicker
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Funny thing was it came from left field.

Oh I've heard of his work before. In fact I think I remember reading something pointing to him being exceptional and about the clinic or whatever but never looked further. Will probably check it out. Could it be as good as it could lol? Like a real AS clinic finally.

Boy it's a shame you need a real pro to deal with this.

They're apart of that Anglo-whatever-whatever league right tasc or Asas or something. Yep that's them. The America-Europe-Australia thing right 12-15 experts or so.

Isn't reveille in the lab more though? I've always liked him.

Well it looks like it is TASC. I cannot find their website and I know they have one. I think I got it from something on the EULAR website. Maybe I'm just thinking of the ASAS website. I can't find out how many members but they are the group though I'm pretty sure with the top guys, more than just ASAS if I remember correctly. I bet you can find it though Molly!

Last edited by Tnate; 05/16/14 05:19 PM. Reason: stuff
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