Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group In defense of NSAIDs and AS

Recently I have seen quite a few people speaking out on this site about NSAIDs in our treatment. I worry that some people are being led away from their use based on these statements, which though some are accurate, others are exaggerated.

Firstly, I would like to address their efficacy; NSAIDs have been shown to slow the progression of the illness and particularly for those of us at risk of osteoporosis, they increase bone density. Their effect is well researched and documented and this is why they are our first line drugs. This article in the BMJ contains quite a lot of evidence, if you have doubts over their efficacy, please read;

http://ard.bmj.com/content/71/10/1593.full


Next, yes, NSAIDs do have side effects including increased risk of heart disease and peptic ulcers. The increased risk of heart disease is fairly minor and only affects those of us who are a little older or more at risk of heart disease. Regarding ulcers; some people tolerate NSAIDs quite well and never get ulcers, unfortunately others do. If you are susceptible, ask your GP about coxibs, a class of NSAIDs which doesn't affect gut lining and is very specific to inflammation.

However, there are some cases where NSAIDs shouldn't be used; allergy, pregnancy, if you are on blood thinners, if you have trouble clotting or have active peptic ulcers. Your doctor may also be wary of prescribing if you have asthma or kidney, heart or liver impairment.

Finally, I would like to address those who are telling others not to take NSAIDs when they have been accurately prescribed by medical professionals.
Please, stop.
NSAIDs are one of the most effective drugs for our condition, there is a reason nearly all of us are prescribed them, and it is backed up by years of research and evidence that they do slow the progression of disease and benefit us as a whole. Even if your intentions are good, you could dissuade someone from using a medication that could really help them.

I hope that's cleared a few things up,

All the best,

Andy

Andy - Take exception to yr use of the term 'exaggeration'. Unlikely anyone here exaggerates their reactions to meds. We will write about our side effects, too long have those very side effects been brushed under the carpet - very clever at doing that here in France. My own reactions to NSAIDs were truly very bad. Now I cannot touch them, in any shape or form. My gut is in a hell of a state - many times cannot leave the house, and all too often a horrible embarrassment (imagine leaving a train after a three hr train journey to find that you have leaked and yr clothes are messed! Not funny). The last of those being Celebrex, my drug of choice for a time until...side effects set in. And still left with the side effects - GERD/reflux. Eat the wrong food, like UK gluten bread, and I stream and stream - even had a UK dentist muttering abuse at me for horrific 'streaming' due to...gluten reaction. Wretched. (No more bagels or scones and Cornish clotted cream. Yep. Horribly bad). Same with the side effects to Azulfidine, caused me tinnitus, and still suffering from tinnitus over two yrs later. Not funny.

They did suggest I go on to the biotherapies, until I pointed out that with stage one skin cancer is not a good idea to be given any biotherapy. Same with their idea of 'infusing' cortisone for osteophytes in the neck - Lordy knows what that was supposed to have done to help, but anyway - with glaucoma and severe retinal damage, one does not give cortispone in any shape or form. Not even by injection into a joint. Same for the aspirin, suggested for CVA; now with glaucoma, it is realised as a distinct possibility for anyone with glaucoma to throw a side effect of macula degeneration. Real nice one. Not.

Believe you me, with the lot that most of us have to manage, we tend to know more of our own disease and what does not work, what 'may' work than most in the medical field. We have to be proactive and, at last, we are being encouraged to be proactive in our own health regimes. Not that many listening, yet, but...the 'noises' are being made !!

Now, the medical fraternity has woken up to the fact that patients are in the 'know'. We will not be hushed up and told it is 'all in yr head' - that happens to us far too often. Just had to put up with that very arrogant French attitude from a medical student in a top rated hospital in Paris re my reactions to 13 anti-hypertensive medications. Had to ask him was he now a qualified cardiologist !

Many here suffer from and have suffered from the side effects of NSAIDs including the celecoxibs. And we are at liberty to discuss ALL our side effects, be it to meds or to supplements or to foods or whatever, this is free discussion on KA. No one is dissuaded from taking meds. In fact, many times au contraire, medications are 'advocated' - and such discussions can get deep and very eeerrrr, interesting?

We are all different. Many will not react to meds and many will react to meds. Wish I were not so flippin reactive. So, I basically take no meds -

Find diet and supplements, vitamins and herbs, help as well as anything helps. Oh yes, and the off and on dive into LDN, low dose Naltrexone. (Good stuff).

(Poor guy in that UK A&E programme just been wheeled in, in severe pain, Behcet's disease. In a real real bad way. Very few of us as bad as that.)

Welcome to KA. Best group bar none, anywhere.

BTW - Andy, the link you posted was the very link I posted, Rbt Inman - a very fine rheumatologist -
In the final analysis, treatment of AS must be customised to the individual patient, as set out as the first principle of the ASAS-EULAR Recommendations.1

Sad that some members of ASAS-EULAR ignore their own recommendations (refers to my own personal experience - does not refer to Inman).

Patellofemoral syndrome - see that you also suffer from this, same here, both knees, though right knee is far worse. Find a firm sided brace helps - when really bad, my support of choice. Fave being an open one that I can fit over thick tights/leggings, without having to 'drag' on.

Hi Molly,

Thank you for your reply. I am sorry you have had such bad experiences with NSAIDs, I do understand that everyone reacts differently and I am sorry if I was not clear in my wording; discussing adverse reactions, side effects and other troubles people have had with medications is very helpful and definitely worthwhile. It helps people to make an informed choice about their treatments.

I was more referring to some posts I have seen where members have outright denied their efficacy and advised against their use without the original poster's medical history or previous reactions to the meds. Although undeniably some people can have trouble with NSAIDs, like yourself, I would hate to think that our community would completely disregard a medication that has been proven to be so useful.

I'm glad you found a treatment that works for you,

Andy

We all hear sooner or later (from people who know nothing about chronic pain)that it will not kill you. But the pain can lead to depression, inactivity(which contributes to other diseases), and even illness from the treatments you are given. I hate to say it, but I think a lot of people here will agree with me- sometimes our best medicine can be our worst enemy. You just have to weigh the pros and cons, do your research, talk to your doctor(hopefully a good one), and sometimes do a trial run. Then pray... And in spite of all that, it might come back and bite us on the butt later, in the form of another symptom, syndrome or disease. But in the long run, it's a decision we all have to make for ourselves with the best information possible.

Andy, welcome and kudos for being willing to state your opinion.

I agree with much of what you said and I do give you a bit of slack on the rest because of your listed career path. The only part that makes me cringe is "when they have been accurately prescribed by medical professionals".

You might want to check out some of the stories that highlight the years that most people on this site have had to deal with incompetent, uncaring, dismissive, and/or box checking "medical professionals".

I and many others have complained about unwanted effects caused by medications only to be ignored OR have the prescribing physician think it would be better to double down on the dosage. (PS. there is no such thing as a "side effect" No matter what- it is an effect of the medication whether it is beneficial or harmful)

I currently have a wonderful Rheumy who listens to me and is tailoring a regiment to what works with my body. Yes, I use some NSAIDs; others have horrible effects that I refuse to subject myself to ever again.

While it saddens me that you are ill. I hope that if anything positive can come out of it, it is the understanding that the patient is the subject matter expert of their body-not a text book.

When I thought I might go mad from the pain (and it had been too soon since my last round of methylprednisone), I was thankful that I could take Aleve for a few days (before the gastritis and edema kicked in). But I always did wonder what it might slowly be doing to my already inflamed GI tract.

Glad I could finally switch to a Biologic.

And that was after trying 8 different NSAIDs and 4 different cox2 inhibitors (back when they were on the market). The only NSAID that really worked and didn't give me side effects right away was the Aleve (Naproxen).

Even the cox2 inhibitors bothered my stomach. Not as fast, but they did. And vioxx was just about the worst for the edema.

When I had my colonoscopy and the gastroenterologist found the small crohns like ulcers in my ileum, I asked him what could cause these. He said the inflammatory arthritis / spondyloarthropathy or NSAIDs. At that point I hadn't had a NSAID or cox2 inhibitor for years, so we knew it was the spondy.

But that got me to thinking about what they (NSAIDs) could possibly do to my gut.

So, yes, I know NSAIDs can help with the inflammation in the joints, but what about the stomach and intestines?

And if "all spondyloarthritis starts in the gut" as my rheumatologist believes, then couldn't the NSAIDs slowly be making the root of the problem worse, even while helping the joints?

Especially for those of us with gastritis / IBS?

Still, I used the Aleve sparingly when I felt I had no other choice. Just glad now that I don't have to make that choice.

Hi Andy,

As a fellow health professional (although I have been given my *wings* and have been in clinical practice for 30 years) I think it is interesting to view what others write with a *very different set of eyes*. No doubt YOU can see things from the health professional's PoV as well as that of the *patient*..

I think instead of an *Us and Them* adversarial mentality we need to encourage both medical professionals and patients to have a more even and open dialogue with each other... the relationship should be seen as a 50/50 partnership instead of a co-dependent relationship or a Benevolent dictatorship.

I prioritise INFORMED CONSENT as a big part of the way I practice. Whilst I acknowledge that there are many patients who are happy to leave ALL the medical decision making to the doctor and would therefore vote for a *benevolent dictatorship* model , I would like them to be better educated about why THEY should be active parties in making decisions about their own healthcare. We should be encouraging those patients to take greater responsibility for themselves and thus have ownership of their wellness.

I think you will find that many of those who are on a board like this are seeking to inform themselves better - possibly because the dialogue they are having with their own healthcare practitioners has been woefully inadequate. They are wanting advice from those who understand what they are going through and perhaps have some BTDT stories to share.

There is wealth of experience (albeit personal..) here as well as some highly informed and intelligent people who spend a lot of time searching the internet for peer reviewed articles that may be useful for other board members to read and thus educate themselves further.

Without meaning to belittle anybody, I know there are some folks who struggle to make sense of some of the PubMed articles as they are written in *medical*, rather than everyday English! This is one of the factors that can make accessing information difficult for the average person.

That's where I think we as a group can come unstuck - there are those who don't always differentiate between fact and opinion . It can be hard to sift through the differing opinions and experiences, but I think if those asking KNOW that this is NOT a MEDICAL SITE, but a fellow sufferers' SUPPORT GROUP it can help with perspective and their own personal decision making.

We also need to remember that the folks who are here are NOT representative of the general AS population: for every strongly opinionated answer you see here, there are probably 10 or more folks with an AS diagnosis walking around living their life doing what they think they need to manage their AS to the best of their (current level of) knowledge.

Statistically speaking this is a highly skewed population here - everybody needs to remember that.

I think the other thing that you might like to think about is that you are young, passionate and being trained in medicine in the mindset of TODAY. I think there is a far greater push for medical students to understand the need for excellent communication skills, to empower patients to actively participate in seeking healthcare and to feel comfortable advocating for themselves whilst negotiating an area that they are not 'professionally trained' in!

This is not meant as a criticism of you,.... but I'll bet if you take off your *medical student* hat and instead try replacing it with your non-medically-educated-average-person-in-the-street hat, you may get a slightly different perspective on how difficult it can be and no doubt HAS BEEN for some of the folks who have posted openly negative comments about THEIR medical management of AS.

Try doing a medical round / outpatients' session alongside the most arrogant and self-confident *older* consultant you have ever met and see if you think he/she was trained in the finer art of patient advocacy, education and empathy...

I hope having a chronic medical condition gives you an even greater desire to see things from BOTH sides of the fence - cos like me, you were probably hardwired prior to birth to be a helper, fixer and healer .... It is always a humbling experience to get another perspective and I think it behooves us all to do some navel-gazing from time to time. It is always difficult to hear others bagging members of the profession YOU have chosen for hopefully the right reasons, but I think we should all be humble enough to acknowledge that no profession contains only The Best..... there are lousy plumbers, shop assistants and accountants out there as well as doctors - it's just that the folks posting here don't think it is relevant to complain about that here.

Have a great day - I always love a great debate and enjoy doing so in a respectful manner, so as this is written and not spoken and you can't see my smiley face I hope you read it in the tone that it is written.

Thanks Andy - AS is such a mish-mash of comorbidities as to make medicating very difficult.

Here is the KA thread, dd Sep 2012, where I posted the Rbt Inman paper - a well balanced paper, and I'll take the liberty of quoting from it :-
https://www.kickas.org/ubbthreads/ubbthreads.php?ubb=showflat&Number=490275&page=1

Ann Rheum Dis 2012;71:1593-1595 doi:10.1136/annrheumdis-2012-201844
Editorial
NSAIDs and radiographic progression in ankylosing spondylitis Bagging big game with small arms?
Nigil Haroon1, Tae-Hwan Kim2, Robert D Inman1

http://ard.bmj.com/content/71/10/1593.full

Are NSAIDs disease-modifying antirheumatic drugs (DMARDS)?

(snipped...)

"What are the risks of continuous NSAID treatment in this patient? Traditionally, concerns about safety of NSAIDs have related primarily to gastrointestinal or cardiovascular adverse events. Recent studies in AS have heightened concerns in both these areas. The recognition that the same polymorphisms in the interleukin (IL)-23 receptor confer susceptibility to AS and inflammatory bowel disease has led to further investigation of the role of occult bowel inflammation in AS. In the studies of Ciccia et al,32 it was found that the upregulation of IL-23 seen in gut tissues of patients with Crohn's disease is also seen in patients with AS with no gastrointestinal symptoms. This follows the earlier pioneering studies of Mielants and Veys demonstrating that subclinical gut inflammation is a common occurrence in AS. With respect to cardiovascular disease, there is increasing recognition that cardiovascular events occur with increased frequency in AS,33 which may be related to disease activity.34 In the context of inflammatory joint disease, NSAIDs may not confer an increased risk of cardiovascular mortality, but this area needs further study in large cohorts with long-term follow-up.35 In psoriatic arthritis, concerns about cardiovascular and gastrointestinal risks have led to a conservative approach to the use of NSAIDs, with the recommendation being the lowest dose and the shortest treatment duration possible with NSAIDs, in view of their potential toxicity.36



Well observed and balanced, bravo Inman - only taken some 20 years from first 'head's up' findings to get this far! Heck, even got as far as France - was 'delightfully' surprised to find four months ago that I did not have to fight my corner for side stepping NSAIDs whereas only two years ago I *had to *fight my corner and received a sound berating from 'lead' ASAS-EULAR rheumy for so doing...