Hi everyone,

Unfortunately this sums it all up for me. Just been to the doctor and he has taken me off humira (due to no response in 3 months) and told me that there is nothing else that can be done. I guess I am one of the few that does not respond to anything. The NSAID's have probably accelerated my disease while providing next to no benefit, yet it is all I can take right now. Unresponsive to NSD and extremely limited diets... and now unresponsive to humira. It makes me even question if I have this disease. I definitely have some form of chronic debilitating pain but I find it strange that nothing has helped me.

Never have I felt so alone and numb in my life. It's getting harder and harder to keep going now but I guess its just what I gotta do. There's only 2 options left... to give up or keep going and I'm not one to quit.

Just gotta keep getting up in the morning and force a smile on my face while I can..

Hope everyone is having a good day..
Seb

It isn't true that there is nothing else that can be done. As far as TNF inhibitors go in NZ Pharmac funds Enbrel as well as Humira. You would qualify under the criteria for Enbrel-

The patient has had an initial Special Authority approval for adalimumab(Humira) for ankylosing spondylitis
and
The patient has experienced intolerable side effects from adalimumab
or
The patient has received insufficient benefit from adalimumab to meet the renewal criteria for adalimumab for ankylosing spondylitis

Not responding to the first TNF inhibitor is perfectly normal. According to Pharmac "40%–50% of patients with ankylosing spondylitis do not respond adequately to first-line treatment with a TNF inhibitor."

Did your doctor mention sulfasalazine at all? If he is saying that there is nothing else that can be done and is not considering enbrel or sulfasalazine then I'd seriously consider finding a more competent doctor. Hang in there as it sounds like there might be some medical options still available.

Hey Jroc,

Guess I feel a little bit more hopeful that there is 1 or 2 more potential options out there..

I asked my doctor about other TNF inhibitors but he said that the fact that I didn't respond to humira was pretty conclusive and he has never seen anyone not respond to one TNF inhibitor and another work for them.

I pretty much asked if there was anything that can be done and he has just prescribed me the same NSAID's and some anti depressants as well, which I didn't even ask for.

I'm not sure how I would approach this situation with my doctor seeing as he seems 100% convinced that this is all that can really be done with me.

I second the option of holding hope in other TNF inhib's. In Aus, my rheumo has put me on Enbrel first, but I've heard of people not responding to one, but responding to the next etc. So there are definitely options.

Good to hear you guys also have TNF inhibs funded over there!

Best of luck.

Hi Seb,
I did not respond to Humira either, in fact I felt worse :(, but I tried remicade and it did work , but then after a couple treatments they took me off becasue I was allergic to it. Have you cut out sugr and dairy? I know it's hard but sometimes when I'm in a lot of pain, which has been happening lately, I eat very strictly and I do feel better, and it gives me hope. Don't loose hope, just come here and vent. Try eating romaine lettuce with cut up roittiserre chicken on top for a couple days and see if it lowers your pain, it does for me and then I slowly add other foods. Hope you feel better, I'd give you a hug if I could, take care.

That may be your doctor's personal experience, but he is mistaken if he thinks that just because one tnf inhib didn't work for you, that the rest won't either. He's just misinformed. There are countless cases where someone will respond to one tnf inhib and not another. I would find another doctor who is willing to trial you on enbrel - seems like you meet the criteria from what jroc posted. You never know - it might make a huge difference for you. (And for the record, humira didn't do anything for me, but enbrel worked very well.) Good luck.

Seb you are not alone. I am unable to use any pain medication, biologics, or anything. Not because they were in effective, but because of severe allergies.

I take one day at a time - I visit my friends here at KickAS - they know what to do to get a smile - they won't let me give up.

Hugs
Gerri & Makaylah

hey seb .... After reading your post i think there are two options.... Either you are extraordinary or your doctor is extraordinarily hopeless.... In both case you need another doctor.... My as is 5 yrs old and even i have heard this line from doctors that nothing can be done.. After hearing this i don't look back at that doctor.. You are sad that you are not responding to meds and here i am staying away from meds from over an year ... I have never had any of those medicines that people talk about here so i cant help you with any of those but atleast i can say that do not get hopeless look for another doctor .. WE are lucky owners of AS we are bound to look for options.. Life is precious so all of us are bound to face the hurdles to keep this valuable life with us...
good luck ...

You definitely need to see if you can see another rheumatologist for a second opinion on the Humira, especially in view of the NZ criteria actually allowing you to try a second biologic.

However, I'm puzzled as to why you believe the NSAIDS have accelerated your disease. NSAIDs are still the first line treatment for AS because they do have positive effect in most people. I know there are a couple of people on KA who have personal theories of them being harmful, but if your stomach tolerates them, they are an excellent (and very cheap, in drug costs) way to directly attack inflammation, and therefore reduce the possibility of your disease accelerating.

The other thing to consider is that maybe you have given up on Humira a bit too soon. While some people do respond quickly, there are a lot who do take longer to show a response, and I thought that six months was understood to be a sensible time to try it for. You have only had it for half of that. There is also the possibility that if you stop it now, you may find that you realise that actually it was doing something signficant for you, but it had happened so gradually you didn't notice.

The final thing is your comment about debilitating pain - I know you do have a lot of trouble with dealing with pain, so maybe now is the time to get your GP to refer you to a pain clinic. Expect that they will try and attack it from a number of different angles (pain clinics usually have different specialists including anaesthetists and psychiatrists), and including an antidepressant into the treatment mix will almost certainly be discussed or suggested (because of the proven effects of some of those drugs on modifying responses to chronic pain). They could well also offer you cognitive behavioural therapy (CBT) because again, this is a well recognised way to help folk deal with chronic illness and chronic pain. If the Pain Clinic team feel that you need more primary treatment (i.e. directed at the AS) they will also work with your rheumatologist on that too, so it could be a good roundabout way of getting the rheumatologist to reconsider options.

Finally, is it possible that you have flared up again after your dishwashing job trial? That would be enough to make most of us suffer badly for a while, and could temporarily break through any good that the humira was doing and make you feel like it wasn't working, when actually all that was happening was that you had overdone the physical activity.

I'd push for a trial on a different aTNF med. I'm on my 3rd biologic (1st shot of Simponi) and even my rheumy says everyone has different body chemistry and what works for one doesn't always work for all. But there are people who don't find what helps.

I think he stopped too soon, too. Everything I've seen says to wait 6 months. Or until side-effects or reactions are intolerable or dangerous.

Like someone else said, you need a pain mgmt doc working for you. It definitely helps.

Good luck on this. (And I think you should keep that job unless it ends up too hard to continue. Show you are a hard worker and after a bit--if you like the place--tell manager that you'd like to continue working there, but are struggling with the current position and wonder if there was something else you could do instead)