Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group I need help

Hey Seb,

Seems like a combination of biologics and NSD could be in order. So many people on here rave about the biologics that they just can't be ignored. And you're young enough that you may be able to prevent further damage by embracing the NSD at the same time.

Assuming you look into biologics then just make sure you're tackling the NSD right the next time. No reason to lose too much weight OR feel that this is an extreme or limiting diet. I know tons of people who do Paleo and Primal diets who have no underlying condition. Check out Marks Daily Apple and I'd recommend buying his book The Primal Blueprint . Yes, it's marketed as a diet book, but it's more of a lifestyle and it's very easily modified to be a completely starch free diet. And the great thing with so many health fanatics embracing these Primal and Paleo diets is that there are fantastic recipe resources available on the web. There's NO NEED to ever feel limited on this diet as there are literally thousands of recipes out there. Check out The Foodee Project if you're every at a loss for a good recipe. And again, anything that has a starchy ingredient (like sweet potato or rice) you just cut and substitute with something safe like celery root or broccoli.

I like what a few of the folks in this thread have said about doing both at the same time. There's no reason to live in pain when there are really good solutions like biologics just waiting for you. And once you get your pain under control then you can research and embrace the NSD in a more clear-headed way. Who knows, maybe you'll be able to cut down your meds slowly but surely over time. Others have embraced and then weened themselves off of meds so why not you?

I think I have now decided that I will try and get on a biologic for a while. The no starch diet is very hard and I'm not sure that I'm up to it at the moment but I will almost certainly be on it again at some point in the future.

The trouble that I have with my rheumatologist is that he never seems willing to prescribe me anything other than NSAIDS. How do you go about getting your rheumatologist to agree to the biologics?

That sounds like a sensible idea. The only prob is that in NZ the criteria to get govt funding for biologics for AS are quite strict. The good news is that they are becoming more relaxed as time goes on and the criteria are updated every few months. When biologics were first funded you had to have previously tried sulfasalazine and you also had to have raised CRP or ESR. Now there is no mention of any blood markers and NSAID's are the only prerequisite drugs to have previously tried. Here are the pharmac rules for biologics for AS as of Dec, 2011.

INITIAL APPLICATION - ankylosing spondylitis
Applications only from a rheumatologist. Approvals valid for 6 months.
Prerequisites (tick boxes where appropriate)

Patient has a confirmed diagnosis of ankylosing spondylitis for more than six months
and
Patient has low back pain and stiffness that is relieved by exercise but not by rest
and
Patient has bilateral sacroiliitis demonstrated by plain radiographs, CT or MRI scan
and
Patient's ankylosing spondylitis has not responded adequately to treatment with two or more non-steroidal anti-inflammatory drugs (NSAIDs), in combination with anti-ulcer therapy if indicated, while patient was undergoing at least 3 months of an exercise regime supervised by a physiotherapist
and
Patient has limitation of motion of the lumbar spine in the sagittal and the frontal planes as determined by the following Bath Ankylosing Spondylitis Metrology Index (BASMI) measures: a modified Schober's test of less than or equal to 4 cm and lumbar side flexion measurement of less than or equal to 10 cm (mean of left and right)
or
Patient has limitation of chest expansion by at least 2.5 cm below the following average normal values corrected for age and gender
and
A Bath Ankylosing Spondylitis Disease Activity Index (BASDAI) of at least 6 on a 0-10 scale. Note: The BASDAI must have been determined at the completion of the 3 month exercise trial, but prior to ceasing NSAID treatment. The BASDAI measure must be no more than 1 month old at the time of initial application.

I had previously thought that the BASDAI was calculated from a complicated serious of tests and measurements carried out by a doctor or rheumy but it turns out that it is just a 6 question survey in which the patient rates their symptoms from 1 - 10 so this part wouldn't be a problem

Jroc has given you the criteria list for NZ, so I guess the way to go about getting the rheumatologist to agree is to work your way through all the eligibility criteria and stages. If you don't have the physical evidence there yet, then it will be a no go right now, but what I would do is to go back to rheumie, say your treatment isn't working and accept what he offers. If that works, great. If it doesn't, give it three months and go back and ask for something else. By the time you have worked through several different things he will be starting to think about biologics and at an appropriate point medically you will be offered them. Different countries have different hoops to jump through, but its not easy anywhere just to decide yourself what you want to take and actually get a doctor to prescribe it - you have to wait until they consider it appropriate.

The big thing though is to get some treatment that works for you, and you will get that if you work with your rheumie, give what he suggests a good try, and feed back regularly to him how it actually affects you - good or bad.

Ouch, that sounds so difficult. Are you feeling any better?
Do you have a rheumatologist who is knowledgeable about AS? Sorry if you've already said so, but I wasn't sure.
Please keep us posted how you are feeling, and how things are going.
It looks like you are getting lots of helpful advice so I won't add anything, except to have hope and keep posting.

A lot of old timers here advising you. The one good thing about internet information is being empowered, the down side is realizing this disease is more than a word. I used to say I had a " bad back " when you say " I have ankylosing spondylitis " that is usually followed by a laugh, then I write it down on paper and hand it to them, if you really want to know here it is. If they don't bother to look it up they deserve no more than " i have...ouch "
This is my second go round with the Enbrel, first time it helped after the first shot, this time not so good, its a very expensive treatment roughly 300.00 per shot. If I were your age again I would give it a shot. no pun intended...lol

as frustrating as it is (been there, done that), i do tend to agree with cemc. but that does mean, "be persistent." give things a good try, unless you can't tolerate a side effect, no one should have to put up with feeling worse on a drug that is supposed to make one feel better. but the faster you "cycle" through the other drugs, the faster you'll end up on one that works for you. i finally left my last rheumy for my current one because like you indicated, he just stopped after 3 nsaids and wouldn't keep trying. i don't expect results necessarily, but i do expect my doctors to try and keep trying and not give up easily. if a doctor will work with you, work with the doctor, is my advice. i only change doctors when one has given up on me.

i'm glad the criteria have relaxed here in the U.S., as there is no way i'd qualify in NZ based on that list. i think the criteria are becoming more inclusive all the time around the world.