Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Enbrel & Day to Day Life

Ya, I forgot about my roll out of bed and straight to a ciggie butt habit, too. We tend to only care about health when we HAVE to care about health. I'm confident that it's not too late though. The common factor from all of the fasts that I listed above is the REST that our digestive system gets from lack of protein. That bulletproofexec.com link says that not having 10-25 grams of protein per day leads to muscle loss. I get really gaunt when I don't eat. Two days after my last 24 hour fast, my dr. didn't say anything but I saw that he wrote "looks thin" on his computer. That was only 2 or 3 weeks after I saw him prior. You are so right when you say that it's a personal journey. All of these people with AS and the same genetic marker but we all seem to have such a wide array of food/environmental sensitivities.
Here's a random FYI MOST mammals live about 7 times past their developmental prime. Eg. dogs being prime at 2 years and living to about 10-16 years. Humans peak at roughly about 20-24 with average life span of 80 years or so. My view is that there is a lot of room for improvement.

Did you see this video posted by MollyC1i?
http://www.youtube.com/watch?v=X0y0PcVJ5Ss

I'm going to see Dr. Blaney from that video in a couple of weeks. You guys have been a god sent to me. Hopefully my expensive consultation will help us all out. I've no idea what the future holds but that olmesartan can be bought in a generic version for one-fifth of the cost of the brand name one.(if it's out of pocket)

How are you doing over there, Bax?

As Marion said, "YOu really need to find out what works for you, which could be so different from the next person.'' I'm starting to look at food items that almost NOBODY has sensitivities to. Like water, red meats, liver, bone broths, egg yolks, apples, grapes, coconut, coconut oil, olive oil are just a few. I'm traveling across the border to the US to buy my grass-fed meats from a private farm that I found here:
http://www.eatwild.com/index.html
It's cheaper for me to buy grass-fed over there in bulk than it is to buy factory meats from my local supermarket.(including gas)
I'm finding that by eliminating nutrient deficient food from my diet,(and never eating out) I'm able to put that money towards less BUT healthier foods. Please don't take what I say as advice as I am far from being in control of my own auto-immunune condition. I don't have IT all figured out but tons of reading, research, has me simply riding "coat tails." I try to figure out what worked and works for this person, that and that person, I weigh it all out and put together the common denominators that seem safe and reasonable.
I don't know you but one thing is for sure, I do really care about your well-being and I think that it's safe to speak on Marion's behalf when I say that we really do feel your pain and urgency to fix yourself.

Good Day 8marie, sorry for the delay I have not been on lately. I wish I had good news. Everyday is a new day. My lower back seems to be doing better this week but my knees and my heels are killing me. All over body aches. My energy level is still very low which leads me to grab (garbage food) for quick fixes. I still nap everyday (1-3 hours), around 1 I crash and I wake up at 8 am and in bed at 9-10. For the first few weeks I did well and have just been going downhill from there. Going to start the no starch diet if I can control those urges for energy.

I really like the bullet proof stuff, I have been pretty much following his diet when not fasting.tommorrow will be 3 week off of enbrel. back pain still hasnt come back. knee, ankle and elbow pains starting to subside. I have recently started low dose naltrexone. My fatigue is gone.

I'm at 20 days without enbrel as well. I still have uveitis right now and am not sure what I should do next. Enbrel hasn't helped my iritis issue and it's hard to know what's working and what's not when I'm on it. I'll probably end up taking an injection tomorrow so I don't run into any strange reactions from coming off to quickly. It's great to hear that diet and LDN are helping you out over there. It's like getting a new lease on life, isn't it!?

Coattails : " roll out of bed" ?? Yep those definitely sound like the pre-AS days... The process takes a bit longer these days !! :-)
I'm surprised you're on Enbrel if you have eyes issues. I'm not an expert on them, I just know my cousin who has AS has iritis/uveitis and her rheumy wants to put her on anti-TNF for it (her joint pain is mild and under control but he's scared she could lose some sight), he hasn't chosen which one yet, but said it definetly won't be enbrel as it is not suited for people with eyes issues ?
I've downloaded that app i mentionned in previous post about food diary, it's wicked, lets you record all foods/drinks as well as symptoms (intensity/length & you can add/customize symptoms), also sleep quality & length, supplements, exercise, bowel movemeents, stress... it then generates an algorythm and is meant to show you the "top suspects" in your food per symptom. Don't know how reliable that'll be, but you can also export your food diary as PDF and do the detective work yourself !! I've started logging into it to get used to it. Big elimination diet starts a month from today...And it is much needed, as odd symptoms are just popping out of the blue, hope it'll help me see a bit clearer into it all...

That would make sense about the enbrel, Marion. It has my back pain well controlled but not my eyes.
Woke up midway thru the night and thought that The Incredible Hulk was giving me a bear hug. I tin-can-manned my way to the fridge for "My Precious."(enbrel injection) I ate some starchy veggies for a late night meal. Great idea, hey?

That app sounds perfect. I'll try to find something similar for android but being on enbrel completely masks any food intolerances, for me. I could eat two jelly donuts and not feel any back/neck pain after. My eye on the other hand...
You've set the date. Feb 17. No backing out now;) I'm excited for you. It really makes sense to do that and I'm confident that I will follow suit after I'm back from holidays near summer. Where did you get you elimination diet plan/schedule from?

Well actually I'll start 18 feb. With valentines day being 14 feb & my man's birthday on the 17 I didn't feel like being on bone broth for those occasions !! But once that's over I'll get started !! I'm going on holidays to canada in June and hopefully by then I'll have a good idea of my safe foods. I've prepared a sort of schedule for my elimination diet, inspired by different things I read on here and about SCD diet. I could send u the PDF file if it can be of help ?
I hope the Enbrel helped your back and made the Inceedible Hulk go away !!

You could sneak in a flask of broth to a fancy, romantic restaurant, no? "Nothing for me, thank you waiter. Oh excuse me, would you heat this up for me please?" I'm allowed to make fun of you bc I have AS too
I smashed The Hulk and hopefully taught him a life long lesson. Was able to go and play sports again later in the night without too much discomfort.
That pdf would be great.
I'm heading to the Philippines in June as well. Wish I had a chance to speak with my rheumy so that I could plan some stuff in advance. I've been to the Phils before and am thinking that I would have a tough time being SCD or NSD off of hotel menus.
I'll send you a private message with my email as I'm not sure if you can attach pdf's to messages on here?

Yeah let's do romance the NSD way !! I'm glad you're feeling better. I'm in a bit of a flare now. Don't know if it's cause I might have had some starch in my dinner Friday or because my Enbrel shot is overdue. Really hoping it's the former, as I've got 2 shots of Enbrel left and hope I can then get off it smoothly thanks to diet... My last holidays I lived off eggs, bacon & tomato for brekkie and lunch & dinner would be grilled plain fish/meat with salad. Main problem is snacks, back then it would be fruit, cheese or white chocolate magnums... But since then I've cut out refined sugar and dairy. And airlines are a bit funny about me taking onboard my blender, dehydrator, yogurt maker and oven to make my usual snacks...
Do you think your rheumy could help you out with NSD ? I mean mine wasn't opposed to it & was impressed by results but he didn't know anything about it !
I've sent the PDF hope it helps !

Thanks for that, Marion. That plan looks great! It's nice to see examples of foods and timelines to give me an idea as to what I'd be up against.
You're flare is exactly what I went through last friday. Small bit of starch but the longest I'd pushed back my injection intervals yet. Hard to know but that one made me think that I have a bit of work to do diet-wise.
Holidays will be challenging but worth figuring out sooner than later. Traveling is my favorite pass time, so I hope to get that worked out too.
My rheumy rolled his eyes when I mentioned NSD and told me that there's nothing definite in tying diet and AS together. I guess everyone here is lying;)
Hopefully the LDN is still working for you Bax?