Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Possibility for complete cure of AS in near future

Dear Dragon_Slayor and Smed !

Thank you for sharing yours personal Experiences. I regret that you too had bad experiences with NSAIDS. I never thought that the there can be as such side effects of NSAIDs as described by you too. I am going to cut down on NSAIDS as soon as possible and ll try to rely on diet and Yoga.

I feel alive with this forum. I know there must be many like me who too gain a lots FROM Kickas.org .

Thank you all for being there.

Will keep on updating

Hello Guys

I would like to know about the Biologics. When is the right time to start biologics through out the course of disease. How about the effectiveness of biologics in controlling the disease.

Thank you

If you get the chance to try biologics, go for it. That's what I think. They don't stop the disease progression, but they slow it immeasurably and many of us find that even if we still have pain, we sleep better and have more energy.

They are the gold standard of treatment for AS at this point.

Hope that helps.

Warm Hugs,

I haven't posted on here much - but have browsed a lot for many years.

I am an avid researcher since my disease changes via diet changes - I know I would be even better on a stricter diet.

I am 49 now and changed my diet 23 years ago - I stopped all NSAID about 3 years (they are a short term fix - I flare more 2 days after wards).

If you research about AI disease then intestinal permeability and gut balance is a top priority - and some foods (especially gluten /gliadin) & NSAID do induce permeability in the gut and greater challenge to immune system. Google "The Gut is Not Like Las Vegas"

Other factors, such as the presence of happy gut bacteria at the time of challenge dictate tolerance or flare-up.

So my 2 penneth as regards possible cure is inducing tolerance to the antigens to which we are currently creating errant immune responses to is a possibility and there has been research for quite a number years in to sub-lingual immuno-therapy.

If I ever lose control of my disease (currently at least 75% better under diet - and possibly even better on my current low carb Banting Diet) then I would seek this out as therapy to fix route cause. [u][/u]

Hello, stazzn:


BIOLOGICS: IMMEDIATELY!

Biologics at least help control pain and symptoms; they are PALLIATIVE and do NOT treat the underlying disease.

AS must be treated aggressively and EARLY using multiple approaches; for immediate pain relief and (diet/antibiotics) for long-term control of permanent skeletal damage.

HEALTH,
John

I agree with DS

also regarding "Biologics" - there are some known side affects under review - and as we know with drugs companies they will usually be underplayed.

Worth considering that a "Biologic" drug does not just target the disease it targets the WHOLE immune system. Leaving us more vulnerable to other issues.

There are less risky options to try first.

TMG, with all respect, your statement about biologic meds is scare-mongering with no facts presented. These meds do not target the whole immune system. Rather, they inhibit the T-cells from leaving the immune system and attacking the point that the B-cells have attached themselves to in error.

Are there side effects? Yes. The worst are most rare and often (not always) resolve with cessation of the med. The least are easily treatable and can often be prevented with a little care when it comes to hygiene.

Biologics aren't perfect, but the side effects are easily researched. We have an entire forum about them here at KA for anyone who wants to know more. Not everyone responds in the same way and as with any treatment, some might have truly adverse reactions while the majority do very well.

The side effects of these medications have not been under-played. While I understand your cynicism with regard to the pharma companies, using that as an excuse to try to talk someone out of trying something that might help them is irresponsible. The news media glommed onto some of the worst about 10-15 years ago and emblazoned them across the world. The medical community has been watching closely for over 20 years and having worked with one of the world's top experts in the field as my rheumy, I can tell you that the research has been quite exhaustive.

They are, until the IL-17 and IL-23 meds have been around long enough for long-term study into the incidents of side and adverse effects, the gold standard of treatment.

Now, perhaps you'd care to outline some of your proved 'less risky' options.

In all our knowledge and science how many true cures have we developed? The recent cure for Hepatitis? What about diseases not induced by viruses or bacteria?

Not too many I think.

My goodness, we can't even figure out why most diseases happen and why drugs work for some and not for others.

IMO we as researchers are amazing at figuring out the mechanisms and processes behind disease but have no clue on the why and what to do about it other than trial and error pharmacology.

Drugs, especially the modern blocking/inhibitor drugs are amazing at controlling diseases for many and increasing lifespans. Hopefully they get better and better (Cosentyx looks like a winner). But a guaranteed cure for everyone with AS will need a breakthrough in knowledge IMO. And then another breakthrough on how to apply that knowledge.

I noticed that a lot of people I work with and generally know are taking biologics now for one autoimmune disease or another. Seems like a plague and we can't even figure out why.

As for the OP. What is much more probable in your lifetime is complete control over your AS (i.e. - you still have AS but it really does not affect your health).

Inanna, I am not putting down meds, but feel very strongly that the successes of NSD and other diet regimens are understudied, underpromoted and seem to be ignored.

Meds of course have there place - BTW by all immune system I meant that Biologics will stop the immune system fighting other "real" infection aside from hopefully stopping the reaction to the antigens causing AS.

I find it frustrating that research is done and reviewed and then sits on the shelf ignored for decades and 80% of rheumi's don't know it is there.

So recent studied are ignored - but even further back we have NEJM studies on treating people with arthritis (Dr. J Turnbull in the 1920s through to the 1940s).

I feel that doctors in the modern world stop becoming scientists - they become purveyors of treatments given by pharmaceutical companies. Then there seems to be a demonisation of rival non profitable treatments.

Perhaps I am lucky - I once had hips (especially right) that were so sore I could hardly walk, the buttock leg pain the rib cage inflammation - my back was so bad for many years - it all just went in to some lucky remission. Except it's not a remission because I could switch it on again within 1 week.

I would not be doing my duty as a human being to put my message out there.

As an analogy - if a car is misfiring, we don't take off the wheels.

Going back to the diet and ignorance - take type 2 diabetes as another example - William Banting in 1860's sold 63,000 copies of a pamphlet, containing a diet that had cured his obesity and type 2 diabetes. Prior to that date this idea started with other physicians - and in the last 5 years has been used by "enlightened doctors" to correct the so called 1960's '70s "research" that saturated fat is bad for us - so people started fueling with carbs and sugar.

There are now a few GPs willing to stick their necks out and treat diabetes with a LCHF diet - and they are having massive success, starting in South Africa and now the UK

Today we have 450,000,000 people in the world with diabetes and the system is so flawed that we have the likes of Nestle, Kelloggs and Coca Cola sponsoring National Dietetics Associations in many countries - and vetting and funding research.

In the UK we have ex-politicians on the board of these companies AND pharmaceutical companies concurrently.

Although I have been gluten wheat free for 23 years - I have progressed to omitting other grains completely (oats, rye, barley and corn) - I usually allow rice and potatoes, but have recently trialled the "Banting Diet" - and feel that my inflammation is reduced further eating Banting Bread and Crackers.

I am 100% drug free (and always avoid NSAIDs) - I have only had 3 "pain" episodes in the last 10 years - and can usually unpick what had caused it.

There wont be too many definitive studies - but I am quite sure that others would improve with this or their own variation of diet changes. Prior to Biologics.

TMG, thank you for your thoughtful reply. I wish we could all respond as you have to a low/no starch diet. Unfortunately, we do not because like all other treatments, the physiology of every patient determines whether or not that patient will respond.

Personally, my treatment plan involves a mix of exercise, restricted starch (mainly no-wheat), supplements, biologics and, unfortunately, Celebrex. I have come to believe that we all should be on a mix of allopathic and alternative treatments, tailored to our individual needs.

While I wish that rheumatologists would be more open-minded when it comes to dietary changes as part of a treatment plan, I understand the skepticism when it comes to the claims made about the low starch regime designed by Dr Ebringer. Sadly (and I can hear the howls already from those who are strong adherents) there is no research that the medical community can turn to as conclusive evidence that it works. There has not been one single clinical study with controls. Not one. All the research that I've seen is research examining other research.

That said, just before I had to move a few years ago, my then rheumy, having watched me on a restricted starch diet and seen what happened when I cheated on it, was moved to ask if KA was able to fund research. We, of course, are not set up for that here, but I was gratified that he was paying attention. His research focus was the biologics. He worked for a teaching hospital, not a pharmaceutical company and he is one of the leading experts in AS internationally.

When looking at research, the first thing we should be checking is who financed it. All research papers must declare where the funding came from.

Your car analogy, by the way, is not quite there. In targeting the immune system, biologics are not taking off the wheels, so to speak, they are fine tuning the electronics. I'm looking forward to watching the progress of the new IL based meds. They are even more specifically targeted than the biologics on the actual thing that has gone wrong in us ... the spot(s) on the genome that have to do with fighting infection.

And it makes sense that biologics are now being used for a fair number of different conditions. You will find that they all involve inflammation of some sort. Many of them are associated with Spondys. And I would like to see depression being treated with biologics, as inflammation in the brain proliferates with depression. I can attest to the difference these meds made in me and my depression has now become situational in nature rather than chronic as it had been from childhood.

Warm Hugs,