Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group 34m diagnosed with AS last week

Hi all.

34 male based in Melbourne, last half year have been waking up with bad lower back every morning, and to cut the story short, was diagnosed with ankylosing spondylitis last week based on xrays and inflammatory levels, and positive for HLBA-27.

The rheumatologist has prescribed me 8 weeks of daily NSAIDs, and mentioned this would then lead to later taking TNF blockers. He dismissed low starch diet as there is not enough research or evidence to back up the claims.

He also pointed me towards the more offical AS sites from the UK and US and when I mentioned kickas.org he advised to steer clear as the site has a lot of misinformation...

With that said, I do know that he has experience of AS (which is +1 over the last few doctors I have been jumping around).

He also mentioned NSAIDs have been proven to slow down the process of AS. However, I imagine they would do a bit of damage to my gut, and that seems to also be something you want to look after when you have AS (depending on which source I want to listen to).
So I am at a bit of a crossroad, contemplating not taking the NSAIDs (pain is bearable, just need to hop out of bed and do some stretches) and focus more on diet. Specifically trying to look after my gut/microbiome by adjusting my diet from 70% paleo to 100% paleo with adjustments to be less starchy, along with doing some more research into probiotics, fish oil, magnesium and what benefits they can bring someone with AS.

I'm usually the kind of person that does whatever the doc recommends (especially over doing your own research on the internet), but this is the first time in my life that I am beginning to feel that some more natural choices might be more beneficial over pharmaceuticals. Or it might be that I am just refusing to believe that I will need medication (and expensive medication) for the rest of my days.

Has been quite a scary week for me, research has led to either horror stories of 30 year olds with fused spines/hunchbacks to success stories of people beating the disease purely with diet. The lack of clear recommended path leaves me quite frustrated and confused (but completely understand that AS is not a well understood disease, and the lack of funding into natural cures when compared to pharmaceutical ones).

Anyhow, I have found this site really useful reading, and sure I will be around for awhile.

Hi

I don't know how it works in Oz, but in the UK in order to qualify for Anti-tnf you need to have tried NSAIDs and found they weren't effective enough.

Do your research into anti-tnf too, its strong stuff. Not saying don't do it, just that you obviously should do your own risk/benefit analysis.

Im from UK, just live over here, and its similar deal. You need 3 months of treatment with two different NSAIDs before you qualify for TNF-alpha inhibitors.

At the moment I am making the assumption that there is no harm trying NSAIDs (have started by taking one every other day) and simultaneously trying no starch for a couple of months. Im interested in natural suppliments like fish oil and l-glutamine, need to read more...

I take glutamine before I exercise and feel that it has a mild but noticeable anti inflammatory effect. However I don't think there is any scientific reason or logic that backs this up!

Fish oil and magnesium don't do much for me, although I continue to take them anyway.

Cutting dairy and bananas made the biggest difference to me.

Good luck

How bad is your inflammation/mobility with the NSAID's at the moment? Knowing what I know now, if I were in your shoes I would try NSD first if I didn't need to reach for NSAID's to function?

My Rheumy here says the same things about NSAID's slowing progression. I've been on them for 15 years and my AS has not progressed in as far as spine fusion goes.

For the first 11/12 years of NSAID use my diet was also typical SAD, and there came a point where even with NSAID's the relief wasn't good enough. Once I introduced NSD and cleaned up my diet, it knocked the inflammation back substantially (and improved my overall health) however I'm still reliant on NSAID's. I can get by now on a lot less of them though. I'm trying to stay away from biologics.

I'm trying to get rid of NSAID use due to potential gut damage they cause making leaky gut worse. They are not to be taken lightly but many prescribe them like lollies.

Hi dlee,

Was wondering what are your reasons for staying away from bioligics?

I pulled the plug on humira last summer, having been on it almost 8 years, but have gone from being "perfect" to major downhill.

However have started the NSD five weeks ago and found a reasonable improvement, even noticed when I mistakenly had starch last week things disimproved for the last few days, but since I found what the offender was (a "Natural yoghurt") things are improving again. Wonder how high this improvement can go though, as I said I was probably 100%(as close as you can get to it) with Humira. But I think maybe the diet can get me to 80%?? Still early days but I'm pretty hopeful.

But the big question is "if I went back on Humira and the NSD....how would that go? Heading back to see the Rheumy doc in three weeks so will hopefully have more information to make a decision by then.

Hi LoryOH,

I must admit that lately I've been thinking about going on Humira when I hear people get back to near 100%. But I prefer to stay away from biologics because as I understand it, they suppress the immune system. I don't trust switching off various functions of your body without there being side effects or other problems downstream. Biologics were not available when I first was diagnosed and I've always just taken NSAID's with little issues. So I'd rather not introduce something new that may or may not cause problems later. I won't even take anything for a headache. Mind you, I just don't get headaches since I cleaned up my diet 3 and a half years ago.

Whilst I'm able and have the will/energy to do it, I will try and get off these NSAID's as well. Its proving to be a long road. However, if I get to the point where its all getting too damned difficult, I will settle for quality of life and take Humira I think. NSAID's with my diet generally keep me around 80 - 90% ok. When I go off them I regress over the course of 2 weeks to somewhere around 20%-30% ok which becomes unbearable.

I eat what I would say is slightly over low starch diet these days. I am more along the lines of Paul Jaminets "Perfect Health Diet" which allows for a fairly decent amount of clean carbs and I make sure I eat fish and natural sources of Omega 3's (DHA in particular) a few times every week.

I've decided I'm not giving up my clean carbs any more and any solution has to allow for me to eat them. On NSD I find it hard to eat the calories I need for my height (2000 cal per day for baseline). High fat/protein on its own without carbs, kills my appetite. I will never eat wheat/grains again in my life. So if I take Humira in future, my diet will still stay clean because I like the general all round health benefits I've got from it.

I think if you went NSD, or LSD, it would possibly allow you to reduce the frequency you would need to take your medication. That's what I'm doing. I take 100mg of diclofenac 3 - 4 times per week only. I used to take 100 mg twice per day 7 days per week.

Hopefully one day I can work it down to zero.

Hi and welcome

I've checked out the other "offical" medical sites, and I have to say that I get more information, help, and support here than anywhere else!

Glad you've been diagnosed and have a plan.