Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Why do biologics not work for some people?

I've just noticed no benefit whatsoever from being on humira and enbrel. It may sound strange but I almost feel as though I feel a little bit better when I'm not on them. If the Anti-TNF target a specific part of the immune system which is responsible to inflammation and pain related to Ankylosing Spondylitis, why is it that some people don't respond to these drugs? Lets say it works well for one person but doesn't work for another. Why is this the case when effectively the drug is targeting the same thing in both people with the same condition? Is it possible that a person can have a combination of more than one type of arthritis which makes their situation more severe? I have a family history of AS and rheumatoid arthritis so perhaps I am battling both?

It is so difficult coming to the realization that there are no more treatment options for me and I'm also at the stage where I have to start looking at living away from home and trying to get full time job. The thought of working 8-9 hours a day is daunting proposition when currently sitting down for more than 30 minutes is typically a nightmare situation. It's sad to admit it but getting through a 3 hour school day is a big accomplishment for me. It is a scary thought, but I guess it is just a case of one day at a time. Just gotta take each day as it comes and hopefully I will find something that will help me in the future.

Seb

I'm not sure anyone can really answer that, other than there seems to be more than one pathway for different people.

The important thing is to not give up, not let it get the best of you. I know that is easier said than done. When I was at my lowest, I had to have others remind me of that.

Living one day at a time like you said, was the only way I got through my darkest days.

Just have a good doctor who won't give up on you, will continue to try new things to help you.

What about remicade? If its not an option for you, maybe it will be in the future.

What about a short course of prednisone / methylprednisone, just to see if it works, then at least you'll know, and maybe have something every so often for your worst flares.

I know your future seems daunting right now, but it is often in our darkest hour, that we get a break.

Thinking of you.

I admire your strength; let us be your strength as well.

I did not do well on Humira, and Orencia helped some joints but not all of my joints. I did do well on Remicade , but then had an allergic reaction. I will give you my opinion, I think for some of us foods make us feel pain and unless you remove the thing that is causing your inflammation then no matter what med you take you will feel pain. I can't say that is the case for everyone, because I just don't know. But I tried metheltrexate hoping I could eat whatever foods I wanted but I still had visible swelling. I always felt sick too, when I am off those meds I don't feel ill.
When I avoid all the foods that cause me inflammation the pain gets better. I think it has to do with healing our gut, then once its healed you can branch out and eat the foods that you could not touch once before. I have seen a lot of people get better this way.

Hi Sue,


Can you tell me the normal dose and course for prednisone / methylprednisone including tapering of it. I intend to start after discussing with my doc.

Jay

seb-
Cymbalta helps me deal with the pain, discomfort and depression of all our symptoms. None of the big guns worked enough to deal with the side effects... with an S brain they all made me stupid.

an occasional fast...gets me some new energy.. but other wise I limp along, wondering how I have made it this far!!

This is a lonely disease, but you are a strong person, that is loved, you are in our thoughts and prayers.

I think one of the answers to that question for AS is that there is still too little known about the mechanisms that cause both the autoimmune response and the inflammation and bone remodelling in AS. Its a bit different in RA where there is a much better understanding, mainly because there has been a lot more research gone on in that field. Thats one reason why RA meds can be quite effective, and that there are more biologics available and approved for RA.

I do firmly believe though that the knowledge about AS disease mechanisms is increasing so fast, and new meds are being developed so quickly now, that it makes it incredibly important to stay in regular contact with your rheumatologist so that you can take advantage of anything new that comes along as soon as possible. NZ is fairly similar to the UK in having a very limited range of anti-tnfs approved for AS right now, but I know in the UK a third was added reasonably recently, and there are a couple more on the horizon, so I would guess that as its a fairly similar approval process NZ would follow fairly soon with adding in new biological meds. Another thing you could do would be if you were willing to be part of drug trials for new biologics to make sure that your rheumatologist knows that so you did get informed as soon as something new was available.

I don't understand how they work for some people. By the time people get diagnosed.. I just don't see how anything empirical can help that..
Also.. I think only 40% of people benefit from these.

One of the "laws" of medicine is that everyone is wired differently. Just look at any drug on the market and you'll see the list of side effects etc that can happen for people.
That's why when I see someone touting a "cure" for AS all I see is red.

Though more than one way, an easy way to start out is to take a medrol dose pack with 4 mg pills. The directions in the medrol dose pack is to take 2 at breakfast, 1 at lunch, 1 at dinner, 2 at bed on day 1, then the number each day goes down by 1, so 6 days total.

You can do it a bit differently as well, but its an easy way to try it.

Ask your rheumy though.

Sue - Thanks again for the help. For some reason this condition has hit me really hard, much harder than I ever would have expected. It's at the point where I am spending most of my life sleeping and always in a lot of pain. I feel like I am missing out on all the things my friends and peers are doing (living in university campuses, living in student flats, working/travelling overseas etc). After reading many comments with people experiencing great results with various methods of treatment, I never really thought I would end up in the state I am in now. Sad to say as a young kid but if I wasn't still studying part time right now I think I'd be on disability pension. Like you said though, one day at a time and hopefully things will be okay in the future..

My doctor is not really interested in me. He never brought up the option of biologics for me, I had to ask about them. It just seems he's there to pick up his massive paycheck of over 100 dollars for prescribing me more and more NSAID's every single visit. It's not a bad way to earn a living though haha.. Perhaps it is time to look at over options. Prednisone might be the next thing to look into, thanks for that suggestion.

Sorry to sound negative and boring as usual, but once again thank you. Your advice is invaluable to me and everyone else here. Appreciate it.

ValsMum - Can I ask what your current diet looks like? I tried the NSD and had inconsistent results but I definitely did notice improvements at times. The connection between food and inflammation is clear to me. My big problem was that I wasn't eating enough because I found that I reacted to so many different foods. So essentially I was sort of starving myself to get relief. This was really bad for me because I got very thin and had more health problems. I noticed the connection with food and pain but I found that I was losing a lot of weight and couldn't get over this problem. How are you doing on the diet now?

Cemc - Thank you for the suggestions. I wish there were more biologic options here in Nz. Hopefully Remicade gets approved sometime in the future but I'm not sure there is the demand over here in New Zealand. I think the vast majority of people would experience relief with either Enbrel or Humira over here and seeing as we have a small population I don't know if the medical companies in Nz would see much benefit. Hopefully I am wrong though and Remicade does become available. I will enquire about the drug trails, thanks again Cemc, appreciate your help as always.

Lon - Thanks for the thoughts. Limp or not, it's great that you've made it this far. AS has been tough to deal with but people like you give me a lot of inspiration. Thanks.

Tnate - Not sure I quite understand your point?

Timo - Yep I guess you are right. Although I have not seen relief, perhaps I should count myself lucky that serious side effects have not been a problem for me.. thanks.