Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Just an update

So I've just taken my 5th Enbrel injection (1 month and 1 week of using the drug) and have not noticed any improvement. I'm still struggling just as much as when I didn't have Enbrel. I also noticed no improvement at all when I was on Humira. Feeling a little worried now as Humira and Enbrel are the only two biologic drugs available for us over here in New Zealand. If Enbrel doesn't work for me I don't have any other treatment options except NSAID's. Is there a chance that I will notice improvements if I stick with Enbrel for a couple more months? I'm finding it very very difficult to function on a daily basis and the fact that this is the last option for me is quite scary.

I am going to stay on the university campus next year and I am really worried that I won't be able to cope, especially with the food that they provide at the student accommodation. There is a lot of starch in the food at university for the reason that it is much cheaper to feed all the students. I really don't want to miss out on this experience though.

Does anyone have any advice? Wish I could post a bit more of a positive update.

Seb

Hello Seb,

Wishing you the best... unsure have much advice at this point, never on biologicals. Have to say I loved the University experience and living on campus... only had one episode at summer school with AS however... AS hit me for good about 2 years after leaving college.

Does university have special setup for individuals that have food sensitivities or are gluten intolerant? May be worth asking.

Otherwise I would look into living off campus in small apartment with kitchen if possible. University I went to typically everyone moved off campus after 2 years to small apartments.

Best to you,

Tim

have you tried sulfasalazine?

I wouldn't be wanting to give up on a biologic until at least 12 weeks. Did they do baseline flexibility measurements or disease activity scoring with you before you went on it? If so, then make sure they repeat them before you decide to stop it, because you may actually find that even though it isn't perfect, it may have been helping more than you realised. Would be horrible to go off it and discover that it had been working all along.

As far as living in student halls goes, you should be able to do at least low starch - avoid the starchy stuff, ask for extra serves of veges, and supplement by having things like nuts and stuff in between times. Its also well worth discussing with the catering manager the fact that you need to be on a very low starch diet, though I wouldn't expect them to be able to keep you to a balanced no-starch diet - just say that things like meat and fish and fruit and vegetables are fine, but you need more of them so you don't have to have the rice or potatoes or pasta. Keep a food tin in your room with non-perishable stuff like dried fruit and nuts or other packets of stuff that doesn't need refrigerating. You might have to do your own breakfasts somehow to avoid the toast or cereal, but I'm sure you can manage. You could also invest in a small microwave for your room so you can prepare snacky meals if the hostel offering is horrible - its amazing what you can do in a microwave.

Hey Tim and Cemc,

I've been going to university while living at home and commuting so far and you really do miss out on the student experience. The thing that has held me back from staying in the halls is definitely my health problems but I really want to push through and try to live on campus next year.

Most students tend to move out of the halls in their second year after they've got a good group of people to live with from their first year living on campus. So I would probably have to live with about 6 months of starchy food if I stayed in the student halls next year. Could see if they make gluten free meals .. not sure how much difference it would make but I imagine it'd be better than nothing. Thanks for those tips as well Cemc.

Unfortunately I've still been in as much pain as I've ever been on Enbrel but I will give it another couple of months. Really strange how I am unresponsive to the best medication but I suppose that's just the way it goes.

Mecca - Rheumy has actually told me that DMARDs will not benefit people with Ankylosing Spondylitis at all. Do you take Sulfasalazine?

Thanks for the thoughts and advice.

Seb

hello seb,
no, i have not taken sulfa, but recall tim mentioning that he had benefited of it big time.
john is also a huge supporter.

and it is a cheap and relatively safe drug.
so thought i would mention it.

My rheumy says it's not a good idea to judge the efficacy until 3 months are past. I gave 6 months for Remicade with no particular effect (raised the dose each time). All the others kicked in within 1-2 months. Don't despair quite yet. If you aren't having any negative side-effects, keep on going.

And good luck to you.

I wondered about suggesting gluten free for you, but it can still contain a lot of starches (potato, rice, corn, etc). However, I do low starch and find that having rice or potatoes every now and then actually doesn't make much difference with rice being the most easily tolerated if I have to have starch. I'd stay away from highly processed grains and flours of any kind though.

Hi Seb

Sorry to hear the Enbrel isn't working. I would second mecca's suggestion of trying sulfasalazine. If you've tried all the other meds then I think it's worth a shot. Here is some more info on SSZ form another thread - https://www.kickas.org/ubbthreads/ubbthreads.php?ubb=showflat&Number=490174#Post490174

As others have said, give the Enbrel a chance still.

As for SSZ, especially can be good if you have inflammation in your GI system too.

Here in the United States, the students could eat in the dining hall, but also at the smaller venues on campus too. We have a sushi place, a mexican food place, a grocery store, etc etc. I could see having a small fridge and microwave in my room and eating places other than the dining hall.

Or if in a dining hall, go for the salad bar, then add the meat and veggies and just stay away from the starches. Have you eaten there? Check it out, you might be surprised.

Hope you are feeling better. Hate to see someone so young, in the prime of your life, not be able to enjoy it the way someone your age should be able to...hang in there, things have a way of turning around.