Kickas.org
Posted By: seb I need help - 01/08/12 10:21 AM
Hey everyone.

The depression has lifted significantly and I have been feeling better in that regard. I have been out and been enjoying life much more.

The truth though is that I'm still really sad and worried at times. I've been through quite a fair amount of pain over 2-3 years so I'm fearful that I'm on the inevitable road to fusion and disability. This almost makes me sick to think about as I've only just finished high school. I try not to let it but this thing has dictated my life for a while. I haven't been able to do things I want (like an overseas exchange) because I don't know how I would cope away from home with this.

I'm in a real dilemma because I can't decide weather to take the traditional approach with this condition or the alternative no starch route.

I've seen what medication can do to you. I have heard of way too many cases of people developing other significant issues as a result of long term medication use. I've seen a friend develop MS because of biologics. I've heard of people developing cancer as well. It just seems too heavy and risky.

On the other hand, I had such a terrible experience when I went on a strict diet. I lost weight, lost confidence, found myself trying to convince endless 'professionals' that the diet truly worked to no avail. I will look back at that time 2 years back as one of the hardest of my life. I know that the diet can work, it's just so hard. It's hard socially, hard to get it right, it's limited etc etc.

So here I am in a place that I have been for over a year, trying to avoid as much starch as possible but still struggling with a lot of pain. Why couldn't I have got this later in life?

I know I'm complaining a lot and to be honest I HATE complaining. I know that there are so many people in this world who have been through pain that would make my experience look pathetic, but I'm still struggling and worried and all of that. It's probably because of my age I lack maturity or something I dunno. I guess the reason why I come here a lot is because I feel alone with this. I don't know anyone my age with arthritis. I NEVER say anything about my AS to ANYONE so the only place I have to let it out is here. I think that's my pride. I just don't want to admit I have anything wrong with me so I find myself putting on a smile and concealing everything.

So I'm sorry again for this. I guess in truth I'm just lost and feel like I'm doing this alone without the support of family or anyone really. I've got many years ahead of me (hopefully) so I guess that is why I'm so concerned.

Truly appreciate any advice or guidance.

Thanks a lot,
Seb
Posted By: The_Inflammator Re: I need help - 01/08/12 10:56 AM
I would seriously look into medication to help with the pain. I was like you with the diet and successful but only lasted 4 months because of energy and depression issues. It might be difficult to get on anything useful unless doctors are convinced you have the disease though. I haven't had that luck yet.
Posted By: cemc Re: I need help - 01/08/12 03:06 PM
I think you probably really need to sit down and have a serious talk with your rheumatologist about all this. I can understand you being reluctant to take meds having seen a couple of bad examples with your friends, but I think you will find that for most people biologics are miracles that deal with all the things you are having the most problem with, and the incidence of those serious side effects is very small.

You are also in a health system that uses "evidence based" decisions on what drugs will be available for prescription, (and there are many drugs that NZ has declined). If the NZ health dept has decided to offer certain biologics, then you can be sure the risks and benefits have definitely been very carefully investigated, especially in the case of very expensive drugs like these.

I suspect that if you don't do something to really "treat" your AS, then you will be much more likely to achieve your worst case predictions of further increases in pain and disability. If you do start treating, then you could just as easily end up having a really good life with minimal disability and little progression.

Have a good talk with your rheumatologist - let him know ALL of your concerns, and then ask for his recommendation again. And then give serious consideration to going with his treatment recommendations at least for a trial period.
Posted By: joannesas Re: I need help - 01/08/12 05:04 PM
Hi Seb, You have all the caring and support from all of us ASers on this site and we all care and understand what you're going through. I think l can speak for most of us and say "Been their, done that". You need to make a decision so you can start to heal. Don't look at the meds as a life long sentence, you have choices one being to go on meds until you get a handle on your pain. That alone should make a huge difference on your outlook about everything, pain is cruel. Once pain is under control start the NSD faithfully, buy some books on the paleo diet just to get a feel for what is good practice when it comes to eating. NSD and paleo diets are great ways of eating and everyone not only people with autoimmune diseases should be eating this way. Once you have eaten NSD for a few months start a plan with your doctor on weaning off your drugs while remaining on the NSD. See what happens. Don't give up and be persistant. Remember you have the end say in your treatments.The doctor is part of YOUR team. GO FOR IT! GOOD LUCK! cheerleader
Posted By: mig Re: I need help - 01/08/12 05:44 PM
Hi Seb,

I think it is smart of you to come here and vent or complain and air your fears, Seb. I hope you will continue to do just that until you begin to feel less alone with your fears, as well as more confident that you can have an amazing life despite this rotten AS.

I've had it since 18, for just over 30 yrs... I have fusion but no obvious deformity that others would notice... my life is good. I have lived with the rotten pain and had lots of fun despite it. Like others have said, finding a treatment that works for you can be a huge help in coping with it, and in ensuring you have the best possible future! I think the challenge is to find a balance between fighting the battle with AS each day, while allowing yourself to ignore it at the same time, so that you can enjoy life along the way.

It is a challenge to find a treatment that works for you and suits you. Perhaps it is not an all or nothing answer? Maybe for you it is a combination of low starch and trialling some medication(s) that you and your doc feel have the best safety profile, until you find one that suits. Daily stretching exercises might be a good one to consider in the mix... but the goal is to find something that helps to some useful degree and is an approach that you are comfortable with. Personally, I have always been more concerned with the long term negative effects of the disease than with the meds, due to the severity of my pain and it's impact on my ability to work, play and enjoy stuff. For you, that 'risk versus benefit' perspective may be quite different. So, we try one approach and if it doesn't work, try a different combo.

I'm rambling a bit but will say one more thing. When I was your age, I really wanted to continue my studies in Italy... but since I wasn't even able to carry my own suitcase, I figured that wasn't a realistic plan - so I changed my plan. I did not give up my dreams, just changed the path I took to get there. Where there is a will, there is a way.

smile Don't apologize for posting - it helps everyone to re-think and to give each other a mental boost in the process!
Posted By: ineptwill Re: I need help - 01/08/12 06:20 PM
18........and had it for 30 years.........errrr 48!!!!! no no no i think you have your starting age wrong.............I think it began when you were 8...!.
Posted By: mig Re: I need help - 01/08/12 07:08 PM
Oy. Stop it you - no aging me prematurely! I am young! tongue3

And stop adding too... no math! Down with math!
Posted By: wolverinefan Re: I need help - 01/08/12 09:21 PM
Seb,

Cemc is right, I feel. Yes, there is a tiny chance you can get cancer or MS (that one is new, never heard that before) as an extreme side effect from the biologics. However, that chance is SO remote, so extremely rare that I think it has to be only a minor factor when deciding whether or not to take the drug. That might sound like a cavalier attitude to some, and maybe it is, but I guess I fall firmly in the school that I'm definitely going to fight the disease I already have (and that could drastically impact my life in a very negative way) and worry about fighting the other diseases if and when I develop one of them.

Let's face it, cancer and MS are scary diseases--just saying their names and thinking about how devastating it would be to contract one of them is very scary--but the chances of developing one of them from the biologics is extremely remote. Yes, it CAN happen. But one thing is certain: because you already DO have AS, if you don't do something to treat it, the disease will almost certainly get worse as the years pass and, unfortunately, there is a good chance some of your worst fears about pain and disability will come true. If I were your age right now (I am 47), I would absolutely choose the NSD as my first choice in treating the disease, which is what you did. According to your own report, that first try at using the NSD just did not work well for you, which is not a terribly unusual reaction, as it's not an easy program to follow.

Since you have tried the NSD once, but, I assume, have not yet tried any of the biologics, you find yourself at a very important crossroad in treating your AS. In front of you lie three options, not two: you can try the NSD again, knowing that many people have had great success with the diet and that while, yes, it is difficult, if you can reach the point where the diet becomes second nature, there's a good chance you will find yourself in a good place when it comes to AS.

Second, you can decide to try the biologics for the first time. Again, many people--myself included--have had great success with the different drugs available to us. Anyone who asks me, I absolutely advocate using Enbrel and Remicade, as they extended my work career by at least 5 years (and would have been much longer if they had been created earlier) and changed my life in a very, very positive way. However, I always add a "but . . . " to my endorsement of the biologics because I recognize that they are powerful drugs that can have strong, negative side effects, meaning even though they have worked for me and I recommend them, every person has to do their own homework and make their own decision about whether or not to take them. Because you are so young and you still have a chance to really stop the disease in its tracks, to me that would increase the odds that I would decide to take the drugs if I were in your shoes.

The third choice is to explore other, even more alternative treatments that are, as of this time, only used by a small number of people. These treatements can include herbal remedies, acupuncture, radon treatments, and many others. Perhaps the most promising lesser-used treatment is the LDN (low-dose naproxen) regimen that quite a few KA members are starting to use with good results. I don't know enough about any of these alternative treatments to even comment on them, but you can find plenty of info about them here at KA.

Finally, there is the fourth option, which is to do nothing (or next to nothing) when it comes to treating your AS. To me, this is the only option you absolutely CANNOT choose, and yet I fear you are right on the brink of inadvertently choosing this route because your fears regarding the negative sides of both the NSD and the biologics is leaving you almost paralyzed and unable to make a choice. Whatever you do, Seb, you just can't let this happen. I know it's easy to become depressed about the future, that it's easy to feel a real sense of hopelessness about the future because AS can cause such very real and very serious problems. However, if you let that depression and worries about the side effects push you into a place where you're unable to choose a treatment option, it's almost a certainty that your worries will become a self-fulfilling prophecy. In other words, you're so worried that the years ahead are going to be terrible due to AS that you're on the verge of doing nothing to stop the disease now, thus absolutely guaranteeing that the years ahead WILL be bad. Does that make sense?

If I was your age now and facing AS, I would try my hardest to look at things this way: Yes, it is a bad disease, but right now, there are more potentially excellent treatment options available than at any point in recent memory. If I look back to what was available to me when I was your age, I see this: No internet, meaning no communities such as KA where information is readily available (trust me when I say that it was next to impossible to learn ANYTHING about this dang disease back then); no biologics, meaning the only real med that docs used were the NSAIDS, which we now know are generally awful drugs that should only be used as an absolute last resort; and no way to really learn about the NSD and gain from the experiences of others who had used it already (thanks in large part to the whole "no internet" thing). I hope that when you look at things that way and realize how bad things were just a very short time ago, it will give you some hope and help you overcome your depression regarding the disease because honestly, Seb, even though things are far from great right now, you absolutely do have far more potentially positive options to choose from than AS patients had even 10 years ago. And, to be even more optimistic, I know there are even more biologic and genetics-based drugs and treatments in the pipeline that could REALLY revolutionize the way AS is treated.

I didn't really mean for this to end up sounding as much like a "pep talk" as it does. The main message I wanted to convey and which I will repeat right here is a simple one: Don't let your fears paralyze you to the point you end up doing what amounts to nothing to treat your AS. Examine the treatment options available to you, choose one, and approach it with all the optimism you can muster. Make sure you fully commit to your choice both physically and emotionally, as doing so will increase your chances of success. Once you've made your choice, give it a real chance to succeed. That is, if you decide to try the NSD again, don't get fed up and quit after just two weeks because that means you would have wasted your time even trying. Same with the biologics; if you choose that route, study the literature and talk with your doctor to determine how long you need to stay on the drug to get an accurate picture of whether or not it will work for you. Anything less is, again, a waste of your time (the one exception to that rule would be if you had to stop taking the drug at ANY point due to negative side effects--of course you need to listen to your body and stop taking the drugs if you do have an adverse reaction to them).

If you can do this, if you can make a choice and stick with it long enough to make an accurate assessment as to whether or not a given treatment option will work for you, then I think you'll see the depression start to lift no matter what happens. Ideally you'll see very positive results from your choice and you'll be less depressed because you are feeling better than you've felt in years. That is my dream for everyone here at KA. But, even if the path you choose ends up not working for you, I think your depression could also be decreased anyhow because you took the bull by the horns and chose to be pro-active instead of quitting and doing nothing. Yes, there would be a let down because the option you chose didn't work well, but you could still be proud of yourself for overcoming your ennui and depression so that you could actually FIGHT against your disease.

Hope this helps (and makes sense!). Good luck to you Seb, and hang in there, as things can definitely get better.

Brad
Posted By: MollyC1i Re: I need help - 01/08/12 09:51 PM
Seb- There is excellent advice here. Read through and think on it. For my ownself, in yr shoes, I'd look at the drugs scene - get a handle on the disease then, later, can go the NSD route? Or LDN/NSD route. When you are more independent to make your own path? That is away from school, no one peering over yr shoulder and, with more confidence.

And, heigh, complain away. Helps to discuss stuff, chew the cud as they say. OK?

Take care.
Posted By: Kancie Re: I need help - 01/09/12 12:09 AM
Seb, I feel partly blessed that no one diagnosed me when I was young.
For the past 20 years, I've just handled pain as it came, and lived my life like I always lived it.
That is a double edged sword, however.

NOT KNOWING: I was able to live my life like any other young person. Eating what I wanted, drinking, etc.
BUT the trade off I didn't know I was making, led me to the present.

KNOWING: I just cannot imagine what it must be like to be young and faced with all of this.
It would have scared and depressed me also, especially since I had no handle on my anxiety then.
What a tough road for a young person to have to face.

I'm unsure what to tell you, since I did not face these questions at your age.
But I did think about what I would tell me, if I could peek into the past and give myself a heads up.

I would tell myself to go get diagnosed, to find a doctor that treated me like a partner in the management of my AS. Someone that discussed and explained in full, ALL options available to me, and encouraged me toward more natural, less invasive treatments. I would tell me that if I can learn to be preventative, maybe I won't be in so much pain later. To be proactive, as naturally as possible. To change my major, and take nutrition and culinary classes. To learn to cook starch free, and learn to make it delicious and easy for anyone to follow. To eat whole, raw foods as often as possible. To find farmers markets where I can get locally grown produce in season, and grass fed free range proteins. To drink a lot of water, especially if I take something for pain. To become a masseuse, start yoga and martial arts classes, and to learn to meditate. And most of all, to exhaustively research any path I may take, weigh the pros and cons, and make conscious, informed choices.

Though the changes would have initially been difficult, I would have met and been influenced by a whole other set of people.
New friends, new choices, new hobbies. All for the better, I think.

If I could really tell me these things, I might be a pain free culinary genius right now, making all of your lives SO much better!
Posted By: Pea Re: I need help - 01/09/12 06:18 AM
Oh how I absolutely love our A.S. family here. Seb, my dear, you have brought out the parent in all of us! We all care about you're future.

I, like many others are year's into this disease and what I would have given to be in you're shoe's with all of the available thing's to try. I was 28 when diagnosed with 3 children. They knew nothing about A.S. back then. They had a one page pamphlet! That was it. We had no computer's back then like Brad said. I wasn't even sent to a Rheumatologist. I had Ulcerative Colitis and he treated both with just one medication, the only thing available at the time! One thing! I was put on Sulphasalizine and sent to pool therapy for 4 year's. Guess what, I went into full remission from both! I was young and they caught it early. I was able to finish raising my children! My Dr. did not tell me that they were separate diseases. I am 54 year's old now and still in remission from Ulcerative Colitis. When my A.S. came back 9 yr.s ago it presented differently then before. I completely forgot that I had it and thought since the Colitis was gone, no problema. I had no way of knowing. I got labeled with Fibromyalgia instead and got no treatment for the A.S. until this year. I saw the term again, remembered that I used to have it, goggled it, ran for my life to a Rheumatologist. Now I have no choices at all and am completely disabled. I am on all of it now and hoping and praying that something will slow the progression because it is so aggressive now at this late stage.

Some hospitals here offer pallative care and you have a whole team of Dr.s working for you and with each other. At your age Seb, I would ask your local hospital if they have support groups for people with chronic pain or ask them if they or other hospitals have groups for people specifically in your age group. If not, it helps to discuss all of this with a psychologist. They will teach you coping method's, how to deal with the pain and help you feel confident in making these decisions. I am very glad you found this site. This family has saved me many times. Hang in there.
Posted By: Sue22 Re: I need help - 01/09/12 08:42 AM
hi seb,

see you already have a lot of good advice, so i'll just add a few things.

i understand your fear of the drugs, but i know i am often too cautious, and when i finally try something and it works, i often wonder why i was so afraid and waited so long. it is a balance between being smartly cautious and being too afraid.

when i get like that, i try to balance my fears from the negative things i hear and read, with the positive success stories i hear and read.

in the end of course it is your decision.

and i know how easy it is to say "try not to worry about the future", but again, i used to worry way too much when i was younger. and now that i am older and can look back i can say this, the things i worried about almost never came to pass and usually turned out better than i could have ever imagined. and the things that were problems, i never saw them coming. the thing i learned along the way is that we really can't predict life and worrying about the future does no good. but it sounds like you know that and can't seem to get yourself to not worry about it.

have you thought of either a good support group especially one with people your own age going through what you are going through or maybe even talking with a therapist that can help you see things in a different light. sometimes its good just to have people to talk to.

its good that you are here, but i think also having people you can talk with face to face would be a good addition.

for me, i have both this forum, which has been quite wonderful for all the obvious reasons, but i also have the support of my husband, friends, a few doctors that i can really count on. i couldn't do it with just this forum alone. for me, its important to have a variety of support.

hope you are feeling better soon.

and as mig said, don't give up on your plans and dreams. sometimes i can't do what i want when i want, but i always hold out the hope that one day i will be able to, when the time is right. or maybe do something similar to compensate. i never just put the ideas out of my mind. where there is a will, there is a way.
Posted By: Dusty1 Re: I need help - 01/09/12 10:37 AM
Hi Seb, ditto to all the above.. I chose to trust my rhuemy and not look at what may come.. Biological were fab for 6 months... Long story short I use Enbrel @ 14-21 day intervals instead of weekly. Have done this for 12 months whilst using the nsd with the goal of weaning off my drugs.. I did it drug / diagnosed free for 12 years,working in a heavy labour type job running a concrete batching plant..and truck driving with heavy lifting. Huge pain and drive to fight thru every day.
Look at the options of assistance (drugs) with a goal of weaning off..
Again I get not letting people know my problems.. I now point them here..
Good luck and fight on my friend..
Julian in Perth Western Australia
Posted By: MollyC1i Re: I need help - 01/09/12 11:12 AM
Seb - Picking up from what Pea suggested. Apart from hospitals who may have an AS group, check with the SAA site (Spondilitis Association of America) see IF they might have a AS support group in your area. Heigh, and if there isn't one around, hows about you setting one up? Could do group swimming andeven stretching / physio classes or stuff like that... Just a thought.

Go well -
Posted By: Lon Re: I need help - 01/09/12 02:27 PM
Seb,
I think we should encourage Kancie:

"""I might be a pain free culinary genius right now, making all of your lives SO much better!"""

it is not too late for all of us to persue goals of health and career!
Posted By: avonldy Re: I need help - 01/09/12 06:16 PM
Seb, you have been given some wonderful advise here. I wish that I had known that I had AS when I was in my early 20's and having a bad flare. My GP just told me to put a piece of plywood under my mattress and take aspirin for the pain. When my hip started hurting, he said to ice it. Had I known what I had, I would have pushed for better meds and would have avoided many of the problems I have had for many years.

You are young and have the opportunity to change the course of this disease and provide for a better future. There are so many medications that are available now that we older people didn't have the opportunity to use. Go for them!

The biologics can turn your life around, if you give them a chance. The risks of cancer or MS are extremely rare. The chances of you fusing and living a life of pain and disability is going to be your future if you do not do something to control your AS now. The longer you wait, the greater your chances of disability.

I took Humira and it gave me back my life. Before Humira, I couldn't drive the 60 miles to see my family without crying, because the pain was so bad. A few weeks after I started Humira, I was able to take a 10 day, 4,000 mile road trip to visit my brother and take my granddaughters to see some of the wonders of our country, like Yellowstone Park.

If I were young like you, and I was offered the chance to try any of the biologics, I would take them in a heartbeat. Stop the pain, perhaps slow the progress of the AS. Then you can take your time researching things like diet to help with the progression of the As until something new and better comes along.
Posted By: Sue22 Re: I need help - 01/09/12 07:58 PM
Originally Posted By: avonldy
I took Humira and it gave me back my life. Before Humira, I couldn't drive the 60 miles to see my family without crying, because the pain was so bad. A few weeks after I started Humira, I was able to take a 10 day, 4,000 mile road trip to visit my brother and take my granddaughters to see some of the wonders of our country, like Yellowstone Park.


thanks donna, i needed to hear that. i've been so back and forth about what i want to do. its helpful to hear these words, even if i've heard them before. heart
Posted By: Dotyisle Re: I need help - 01/10/12 02:31 PM
Hello Seb,

Sorry to hear you need some help. Regarding the direction you want to go, natural or medicine... you can always use a combination of both as well. Maybe you can limit the amount of meds you need if complimenting with natural helps.

Life is a long journey, take one day at a time.

Tim
Posted By: seb Re: I need help - 01/16/12 10:37 AM
Hey everybody,

The support and advice that you have all provided me here has been truly amazing. I want to thank you all for everything, I really do appreciate it. I have read every single comment and each one has CERTAINLY helped me try and sort this out. I went away on holiday with my family for a week and I can probably say that it has been the toughest week of my life. I have been in ridiculously unbearable pain and was in bed for most of the trip. On a pain scale of 10, the pain that I experienced was definitely 10. I went through stages where I felt like I didn't want to be alive because the pain was so severe.

But by being at the lowest point of my life, it helped me to understand that I can't live like this anymore. I've got to try and get my life back. So I'm wondering if I could ask another question. It's a very broad question that is potentially unanswerable but what are the safest and most effective drugs for AS out there/what drugs have really worked well for you? If you are on the biologics, do you continue to take other meds in attempt to slow the progression? The only drugs that I have taken are NSAIDS which do absolutely nothing for me and aparently they accelerate the disease which is one reason why I have always been reluctant to take them.

Anyway thanks again for the help, you guys are great.

Seb
Posted By: Sue22 Re: I need help - 01/16/12 11:44 AM
in my opinion, the biologics seem to be the gold standard. a lot of people tolerate them very well and have much success with them as you've seen on here.

another thing you could try is LDN. almost certainly not as effective as the biologics, but as far as i can tell from both my experience and everything i've read, very safe.

i'm trying very hard to do it with LDN, topical nsaid patches and gel/creme, supplements, diet, and exercise, and while i feel much better between flares, i still flare. if allergy shots don't stop my flares, i will be moving on to sulfasalazine or a biologic, probably humira to start.

i should add: the reason i took this approach is that it took me a long time to find a rheumatologist who could dx and therefore treat me with the proper meds for inflammatory arthritis. if i had presented more classically, perhaps i'd have traveled a different path. just wanted to add that. i'm not necessarily doing things this way because of a conscious decision that i made; it was merely the best decision at the time, being limited in what i was allowed to ask for. if it works in the end, great, but if not, i'm prepared to add in either the SSZ or humira. i'll probably still continue much of what i'm already doing, i just need a bit more, as what i'm currently doing, while better than in the past, still isn't quite enough.
Posted By: bobc Re: I need help - 01/16/12 02:36 PM
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?
Posted By: seb Re: I need help - 01/17/12 10:48 PM
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?
Posted By: jroc Re: I need help - 01/17/12 11:37 PM
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 wink
Posted By: cemc Re: I need help - 01/18/12 09:57 PM
Originally Posted By: seb

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?


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.
Posted By: naj Re: I need help - 01/18/12 10:14 PM
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.
Posted By: elmerfudd Re: I need help - 01/18/12 10:56 PM
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
Posted By: Sue22 Re: I need help - 01/18/12 11:08 PM
Originally Posted By: cemc
Originally Posted By: seb

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?


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.


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.
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