Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group I think I have to come off of Enbrel.

Those kind of reactions are scary -- I'm glad you're going off of biologics before it is too late!

My GP told me about a former patient who had a bad reaction but tried again (against his advice) because they wanted it to work so badly... and the next try was FATAL! Some people here might be sick of hearing me bring up that story, but it comes to my mind every time I hear about someone like you or Donette getting a serious reaction, sure don't want that to happen to you guys...



You're so cool, way to make the best of it

I don't have a login at that forum, but if I created one I could be ankspo72

Hi SJLC,
I hear ankspo70 is available too. It's kind of odd that I would use ankspo** as a username though. I wanted to create a username to use there where people there couldn't identify me here... So what do I do???... I decide to use ankspo71 because it is easy for me to remember lol. Now I have that username for different *ubuntu related sites. The ankspo should be obvious what it means the 71 is my birth year.

I watched a part of "ubuntu user days", but that was after missing half of it. It was pretty good.

Yeah that does sound scary what your doctor told you. And you know what? I can almost picture myself doing that one day, because I do often think about "what really happened" on the day I had xyz complications with a certain med, and then I think about "would it ever happen again" with the same xyz med. I'm not a person that believes in "it was just a coincidence" though, so I don't think I will ever let it happen. I'll remember your story the next time I think about things like that. So far I have stayed clear of the individual meds that have caused serious problems in the past. I have returned to specific meds that have given me minor side effects though.
Take care,
James

Hi Megan,
Well first I have the hopes of trying LDN, and since I wouldn't be able to take pain killers with that, I would find me a good non-naracotic ointment (or patches or wraps) to help with problem areas.

I really wish my doctors would just consider treating me naturally for once though because I'm having trouble with alot of the pharmacuetically made meds. They have to see that by now. Unfortunately, I don't think there is a common ground problem area in meds either, because it's such a wide variety of meds that I have trouble with. Unless maybe sulfates is the problem. I want to have my allergies retested. The only time I had it done was when I was between 5-7 years old I think, and they detected pet and outdoor (and food allergies I think) but I know there were no med allergies.

I even have trouble with processed foods (the things that are extra sweet or containing fine particles of ingredients). Cucumbers, Tomatoes (especially processed), and anything from the Onion and Garlic families of food are out too. I can tolerate a little ketchup (barely), but I am preferring mustard for most things now, or hot-sauce (oil, vinegar, and pepper ingredients only). I can somewhat tolerate 0.5 to 1 serving of dairy a day (max), and I can only handle limited fats and oils. So dieting alone is going to be rough for me, as it was before, not to mention the other troubles I have while dieting.

So I think I am going to need a combination of things (diet, supplements, and alternative meds, and an allergy test!).

Oh by the way, I'm glad you responded to my post, nice to see you again.

Take care,
James.

Hi Wendy.
Nice to hear from you again.

I hope I don't sound like an angry person when I say this (because I'm not, just disappointed), it hurts me to say that I may be giving up on Rheumatologists. I mean if my current rheumy can't find me something I can use safely, within during the next 6 months or so. I've been on every class of drugs already, unless there are some I don't know about.

I talked to Kevin about a week ago. He seems to be doing well.
Take care,
James.

Hi Lisa.
I know what you mean. I still do consider myself one of "the lucky ones", because I do have access to doctors and the medications they give. I'm not so lucky in the side effects department, or in the physical limitations created by AS though. I guess I can't have my cake and eat it too... not that I enjoy eating cake or anything.

I'm with you on the narcotics topic too. Side effects get to be too much sometimes, and sometimes I feel better off going without.

Take care, and I hope you can squeeze a few more months out of what's left the remicade.
James

Oh James, I'm so sorry to hear this, I hope this will only be a temporary set-back for you. I had to get off of it back in Feb. because I got really sick but I was able to start back up two months later but I still don't have my inflammation under vcontrol yet, it's much better though. But I too feel like the Enbrel is losing it's effectiveness, I'm not seeing nearly the benefit from it that I used to experience. I'm going to ask my Rheumy at my next visit, here in a couple of weeks, if I can go back up to two injections a week again. The lack of improvement on it is so noticeable that I actually was wondering if they changed the formula or were maybe making it weaker, which I know is crazy but it just isn't the same...thanks for the update James and keep us posted...

how exactly do the foods bother you? i have a lot of various issues w/ food too. anywhere from allergy to causing body pain when i consume.

Hi SunnyPower.

Sorry about the long post you're about to read. I tried to keep it basic and organized but it didn't turn out that way.

Cucumbers cause severe cramps and bloating. Cabbage does too if more than a serving a day. (Cucumbers might be the quickest offending vegetable for me.

Tomatoes especially canned/bottled/processed causes heartburn.
I'll rank the Tomatoes at second place.

Garlic and Onions give me some heartburn but also give me chest pains and bloating too. I have a heart rhythm condition though. They might be also reacting to my heart pills or something.

Soy can trigger my asthma attacks and sometimes make me break out.

Fats and oils do a bad number on my colitis. (slides right through it seems lol) I could swear it effects my heart rhythym too, if consumed in larger amounts.

Dairy is bad for my colitis and causes bloating, probably has something to do with my ear infections too. Not having dairy seems to help relieve them though.

The water in the shower makes my psoriasis break out. If I drink too much of it, it can give me heartburn and reflux. Our water quality is poor because it is always over chlorinated (complete with warning notices in the mail) I haven't seen one this year yet though (maybe last year too)

Then there is the food that I need to avoid to have other gastric problems like under-digestion, and other IBS-IBD symptoms. Some of these are the harder to digest foods like the skins of apples, potatoes, corn, peas, then nearly all seads, nuts are too oily for me just as they are harder to digest, fish is almost always too oily for me (but I can take fish oils capsules, I know it doesn't make sense to me either, or maybe I'm just allergic to fish?) Eggs give me trouble too but they aren't hard to digest.

Basically I have to rationally eat a bit of everything or else I suffer the consequences later. I used to have to be really strict with my food consumption, but not it isn't as extreme now.

I can have a slice of tomato and lettuce, 2 table spoons of canned peas, or a tablespoon of very cooked canned corn, a long slice if bacon (dried from grease), a tab of butter a slice of chease a few times a week, etc. That won't hurt me much at all. On the other hand, I like salads alot, but I can only eat baby portions of it, same with cole slaw, etc.


The things that effect my AS are, whatever flares my GI, and things that are over sweetened with artificial sweeteners, High Fructose Corn Syrup (not so much in pop though which always eases the problems in my GI), Citrus in large amounts, and even brown sugar.

Starch is another problem and equally as serious, but not all starches effect me though. I feel I can get away with whole grains, but not the over-processed grains. Plain oatmeal and cream of wheat (no cream or milk) is acceptable, but not flavored oatmeal or the ones that have added flours. Any grains with sweeteners or many artificial ingredients is the worst grains for me such as donuts, cookies, other snacks that contain many ingredients (cheese puffs etc). Whole grain rye or wheat and even sub-buns I can live with, but white bread, croissants, french toast, etc will create pain for me. Almost all candy is out of the picture for me. I will eat chocolate here in there, and I prefer it to be not too sweet (no nuts).

Just to remind everyone who reads this, I am probably the last person to give advice about starches, because I cheat frequently, especially lately, and I don't always look for starch content.

Take care,
James

mmm mmm mmm! i have probs w/ most of the foods you mention. though my reactions are mostly NOT gut related. very nice complete listing youve done i just wish i could be more helpful.

on the water note...
do you have a friend w/ well water that you could shower there a couple times a week? it could help maybe.

sorry about your probs w/ drugs that help :[ i hope you find something that can help.

Hi SunnyPower,
I don't know anyone that I can visit with well water. Hmm, I never bathed in well water. I know there are some people with well water in my area though, around by the farms mostly.

If I can keep my showers around 5 minutes (running water time) and keep using an aloe based natural soap to keep my skin hydrated and protected, I won't have any problems with the water effecting my psoriasis, but if it does it wouldn't last too long. Aloe has healing properties too which is even better. I also turn the shower head off or step away from the shower, so I can lather up, which gives me more time in the shower.

If I take a shower like the average person, about 15 minutes with an everyday bath soap, within a few hours I'll have some redness and scaling. The extra moisture would really hurt my AS too.

The Enbrel did a fantastic job treating my psoriasis too, so showering won't be a problem until the Enbrel fades away.

Take care,
James