No surprise to me.  It's in the literature.  Pain relief, exercise, diet are the only help I have found.

Yes, I found out the hard way! MRI last weeks showed extensive fusing and now deteriation of vertebrae after being on enbrel, humira and remicade over the past eight years. Tnf agents for us will only help with symptoms as the literature was all updated this year to reflect!

I am starting my 12th year on Remicade and I have no doudt that it has significantly slowed the progression on my case of AS - I have been dealing with AS since the late 1970's I was given my life back by Remicade - after decades of very active AS I am convinced that based on how well I responded to Remicade (2001) I would have been spared considerable fusion (not to mention well over a decade of severe pain) had I been able to take this drug in the mid-80's...Would I have? Doubtful - I spent my first ten years in denial thinking I was in control and could exercise & healthy eat my way forward.Its clear drug therapies can be very harmful, disappointingly ineffective and counterproductive.  AS you likely know this disease has many levels of involvement and if the inflammation cycle starts raging it can be near impossible to stop - serious and permanent damage can happen very fast.  It???s become very clear to me that early and aggressive treatment can often save off significant damage if active and severe AS is present ??� some people have relatively minor cases of AS, others can be severely disabled in a matter of a few years, broad case treatment statements are not possible, each individual case has many potential levels and areas of involvement and everybody responds VERY differently to treatments.I spent my early 20's to my mid-40's fighting be able to do much of anything, AS fully controlled my days, nights and thoughts...I grew stronger spiritually than I ever could have imagined...but not until 2001 and Remicade was I able to resume "life" - today I do things that I had not been able to do since I was 20 years old....I'm 54 now.  TNF blockers are NOT a cure, but the life changing power of these medications and the potential ability to significantly slow the progression cannot be denied.I have a very personal story that details my mother???s life with AS and my own ??� I will share with any AS???ers that ask???if you do wish ti read it, please respect this story is mine and mother???s life story and it IS personal???I will warn you, it may be more than your ready for if you since are just starting out???but knowledge is power and you need to know how bad this disease can be???my mother???s journey (1920-1988) was brutal.  I offer it only to perhaps help with the decisions you must make regarding treatment, to validate the feelings you will be having and to share with friends and family that may have a hard time understanding what you are going through. Please be discrete if you chose to share it???I???ve been so very blessed these last dozen years that I simply need to give back what I can to others dealing with this disease ??� especially given it???s AS awareness month???Peace & Very Best WishesJimCenterville, MN

I've read this as well.  If it has given you back your mobility you've got hope.  Keep on stretching AND strengthing.  It truly is 'use it or lose it'.   AS patients need to have move muscular strength in the core/spine (includes the neck) than most of the human race.    Sorry for the junk that seems to follow this reply.  I have not entered it, I try to erase it, but it's still there.

I haven't heard that yet.  But, these drugs were originally targeted for rheumatoid arthritis patients and some other mild autoimmune illnesses.  I can see the logic in what your Dr is saying as a healthcare provider myself.  The biologic drugs are intended to suppress the inflammatory response by targeting the immune system.  Which is why it puts us all at such high risk of very negative side effects, potentially.   The drugs do act systemically, (through out the whole body).  But do not specifically act on the spine.  I think we all need to be aware of new and forthcoming information on these drugs as we are all now sort of "guinea pigs" for the long term effects pf these drugs.  Thankyou for sharing this information.  Let's all continue to share what we are hearing and reading about this disease and the drugs to treat them.  I wouldn't be discouraged, as they will provide at least some pain relief and increase in function for most people.  We take what we can get, the other option is.....nothing!   Prayers for everyone who is fighting this and many other painful, debilitating illnesses.  Thankyou again for sharing this!

In the communities I participate in, I read that these type of drugs are a great help to many. However, I am also always coming across posts stating how they lose effectiveness, etc. I guess it depends on the person and the severity of their AS. You really have to weigh out what is right for yourself. For me, at this time, such drugs are not worth the gamble. I manage very well with a no starch diet, and exercise. Exercise is crucial, even if you don't believe the diet matters, exercise is crucial. You must move, and you must move often. Find a variety of activities which bring you joy, and make the effort to get mobile. You will be glad you did. Does it hurt me to get up and exercise? Yes. But I feel much much better once up and at em. We play with the wii, do yoga, and dance like silly people, all in the name of kicking AS.

When I was on Humira I almost forgot I had AS, except the injection every 2 weeks. So for me it was excellent. I developed MS maybe as a result of taking Humira and now I can not take it  and I am in pain everyday now with back chest hip pain

Oh Wow! I was taken off Humira in December due to horrible side effects. My rheumy has been making me wait to start other treatment.  I was so angry with him. Now I'm not so sure. Time for another serious discussion.  Luckily, he always calls me back.  This is just scary.

What you have said is essentially correct. The Problem with AS is that it has multiple levels of manifestation and it is difficult to ascribe a linear cause and effect chain to it. This is compounded by the fact that AS is a very individual condition much like most chronic conditions - two patients with same age, lifestyle, same  diagnosis and medications can have widely differing graphs of prognosis - even after controlling for everything - there is still a large element of uncertainity and ambiguity involved in AS.( right from why it happens, what genes/ external factors are responsible etc etc)

Ideally speaking - since inflammation is the root cause of the disease ( auto-immune is manifested by inflammation) one would expect that these TNF inhibitors which work to suppress the inflammation will directly affect the progression  of disease and rate of fusing.

However this is not so. Though there is significant correlaton between inflammation and disease progression - it is not one - to one. Similarly while there is correlation between pain and inflammation, it is not one to one also.

The Actions one takes  have differing objectives - 1) Dealing with Pain 2) Dealing with Inflammation and 3) Dealing with Disease Progression.

For A rheumatologist, the primary concern is controlling the inflammation ( pain relief is secondary). His goal is to give you a cocktail of drugs  which will bring your chronic inflammation down to the safe window and maintain it there.

If the anti-inflammatory drug suits you well - it will also help to a large extent in the pain relief - ( otherwise one may need to take an additonal pain relief ( analgesic) medicine.

The problem is as I said - controlling the inflammation ( and secondarily pain) does not gurantee good control of disease progression - any kind of drug to treat inflammation "may help" in slowing progression but there is no gurantee.. No medical magic pill

Humira, Remicade etc help in controlling inflammation - and the consequent effect of that is that you gain mobility back, have much less pain and stiffness  and it "MAY" ( or maynot) help in long term disease progression but I wouldn't bet on it. And another con of these drugs is that there are no really long term studies ( over 15-20 years) to give statistical evidence.

Since disease progression is long term and not something a doctor can "treat" - the key idea there is to do everything possible - diet, exercise, physiotherapy, and equally main positive attitude, low stress, meditation etc. Whatever helps.

I got diagnosed in 2011 after 1 year of extremely fast AS progression - mine was an abnormal case - in that I got uveitis, peripheral arthritis, dactylitis etc before and only at the end did the disease manifest in the hips and spine - but in less than 1 year I went from an active guy who ran 6-8 km a day to one crawling and barely able to walk due to hips and lower back and foot sole pain, bad episodes of uveitis and worst dactylitis in my fingers - I could hardly lift a spoon.

Humira has thankfully controlled my condition well. I try to avoid Arcoxia ( etrocoxib) as much as possible as I can bear pain. My Rheumatologist told me to never think of Humira as a long term thing. Think of it as controlling inflammation and returning mobility and reducing pain and stiffness. One then has to USE these gifts given by these extremely strong and extremely severe side -effect drugs to maintain very active life style

So Maintain active lifesstyle - diet and exercise - the whole works - and maintain positive attitude - keep fingers crossed  that the disease does not progress.

One thing I would like to add - please add some meditation, deep breathing component to your lifestyle. There are scientific studies that show that meditation has a direct effect on your inflammation levels - and stress has an equally negative effect. So while you are doing the physical things - do not neglect the mental side of it - as much as it is a cliche - the mind does have a tremendous effect on the body.

Take care and Good luck

I second everything Jim says. Look, there's no cure for AS yet, so you do the best you can with what's available. Diet, exercise - those are critical. The medications, well, that's a personal choice - one which I believe in. When Remicade was working for me, it also gave me my life back - so that alone was worth it. When it stopped working, I bounced over to Humira which worked just enough to keep me going ... But barely. When that stopped working, I was in the worst pain I could imagine a human being having to endure. I began to understand why people with long term illnesses cave in to despair. Then I started taking Cimzia and I'm back in action. It's not perfect - not like the first few weeks that I was on Remicade - but I'm back in the gym, and walking 4 to 6 miles every time I take my dogs out for a stroll (and I do it *fast*). I can bend down and tie my shoelaces and even use a computer keyboard for hours. Yep, I still have pain and my joints still swell up as I get further away from my injection day, but I'm SO happy to be able to do the things that make my life enjoyable. And if I fuse ... Well, I'll cross that bridge if and when I come to it. I'm lovin' life right now, and I have Cimzia to thank for it.

My RHEUMY was honest to me. He said there is known cure. He said to stay active. Use smaller pillow to prevent or encouraging of spine curvature. He tried remicade on me but I had side affects so ceased after only about 2-3 weeks. He further said that AS has been known to stop, reasons unknown.its been about 30 years since I last saw him. Still I try to find info for cure, but now I am 67 and still feel about 45. About a year Ago I was referred to a neuroligist. My spine bones at the neck are fusing. The neuroligist, honestly said that he could not promise positive results, possibly may cause me to be parapalygic . So thanks but no thanks. So for me personally , stay active, always have a positive attitude, have life goals, and count your blessings. I've seen people in so much pain it makes feel fine. Thanks To God.

There is no research which ever indicated that the biologic medications had any impact, whatsoever, on preventing, slowing, or otherwise favorably modifying joint damage in AS.  The research which seemed to indicate that this was the case for RA is what I would call (and I'm not alone in this opinion) questionable.  These medications help with inflammation and flexibility, and that has been the case all along.  If you want to preserve your joints, you need to have a diet and lifestyle which keeps you active and at your lowest body weight.  That is the only research-demonstrated way you can preserve your joint health.

I knew already these wonder drugs and wonder exercises are not what there made up to be, exercise might help a majority as will med's, but in my case, half the moves are causing more injury, and the med's have enough side effects to question their use with autoimmune I am just relieved to hear someone finally admit this openly

Funny, cause this is what I am thinking.  I am back to taking NSAIDS for pain.  I was just at the Rheumatologist on Wednesday and he told me the Humira and my AS was under great control.  I was trying to tell him it wasn't because my MRI is showing degenerative disc disease and herniations that are going up to L1 now.  I said my disease is progressing more rapidly now.  He says my problems are mechanical now and nothing to do with the AS.  Told me to go see a neurosurgeon.

Oh my and i was told these drugs, i can only dream of buying, will cure me. So depressing!

Yes. My Dr said the same last week. 'We don't know if it will prevent bone fusing/spurs so you need to make sure you maintain good range of motion'.
At least now on Humira I am able to stretch and bend... Not before! I'll take those odds :-)
I am also Starch free - I figure anything I can do, right? I'm even starting to find ways of making Tofu taste great!

TNF's are helpful in about 50% of AS patients. (don't remember the exact percentage). I have had a little relief from Vit D. I am starting Enbrel in Nov. My doc stated that it is a shortterm therapy, hopes I am off in 6mo.

Well all I can say is that Enbrel changed my life for the better when I was on it and I almost forgot I has AS - I was going the gym everyday. I had to come off it though because of recurring kidney infections and humira did nothing for me. I think your doctor is generalising too much - also don't forget the health care administrators don't want to admit it works because it costs too much money.

I have been injecting Embrel since May 2011 my pain remains pretty much the same but the benefit is I am not in as much of a mental fog and I have better endurance with the assistance of 20 to 30 mg of loritab daily. From that perspective, I have been greatly benefitted. I read these posts and my heart goes out to you. Hang tough and keep looking for your combination of these drugs, diet and exercise for your partial if not whole relief. This is a very tough disease.

I am shocked :-o

so what alternative should we use now?

My disease seems to be taking a different course than most.  I had problems that started when I was younger, but it has only really become a severe problem to my mobility and my daily functioning starting in my late 40's.  Doc seems to think that I am out of the woods because of my age, but I feel like I am having my worst symptoms later in life than most people - and that I am heading for more trouble than I have had before.  I am grateful for the relief from the constant battle with pain and stiffness, but am confused about what it means for me with my disease ramping up so late in life.  Since NSAID's are not an option for me, I am asking about them because I don't know.My understanding is that the DMD's (disease modifying drugs) for AS are the NSAIDs.  It was discovered that the anti-TNF's do a better job of helping with pain and stiffness, but they have never been called DMD's in the literature I have read.  Do you stop taking the DMD's when you start taking the anti-TNF's?  If so, perhaps it would be worth it to use both types of treatments.  Are there any studies on using both?  I have gastro issues that prevent me from taking them, or I would personally use both.  They are different mechanisms of treatment, and both have therapeutic value.  Sorry if I seem out of line - I just think it might be a valid treatment option.

I'm so confused my dr wants to start me on Humira but if it doesn't help slow the progression I don't want to be putting it in to my body? This us all so confusing and I don't know who to believe!!

It is what it is, I get tired of it but I just live day by day and do the best I can, I don't tell my rheumy everything thats wrong, its hard to remember, to many things.  I started a new TNF blocker, it doesn't take my inflammtion down but it does something for the what ever is dragging me and my spirit down.

I can feel that my spinal fusing is still progressing, and I had read that there is disagreement over the effectiveness of biologicals.  I'm just grateful I don't have to suffer as much as my grandfather or uncle because the medications available now are a big improvement over the options for AS that they had.  My grandfather really had nothing.  My uncle had nothing for years, and then NSAIDS.  NSAIDS worked for me for a couple of years, but ultimately things got so bad on NSAIDS that I thought I was going to have to move into a nursing home at age 42.  So I'm grateful that biologicals make me well enough to live in my own home.

The pain releif is what I seek and the increased mobility.  Enbrel did that for me( until it stopped working)  I am hoping that Humira will do the same.  I also suffered from Cold Uticartia and Enbrel relieved that as well .  No more Hives just from touching something cold.

It's kind of disappointing ... But at least we get some relief from symptoms when they work.  I'd still take it for that reason!

I just switched from Enbrel to Humira. On Enbrel I had bad side effects and hardly any relief. On Humira, I have no side effects and hardly any relief.  So I'm not surprised to hear these TNFs aren't working as doctors thought they would.  In my case, they don't work at all.

Scary!

Oh that is scary, I'm on enbrel (etanercept), I wonder if the same applies?

These medications don't work and the medical profession knew this all along I bet.  We are all one big experiment to them. We are supporting Big Pharm and making ourselves sicker in the process. They are trying these medications on chrones and psoriasis now too. I heard my friend who has ms is on humeria. They are using the sick population as one big study to see what happens.