Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group A Walking Contradiction

That title has more layers than an onion.

-45mgs Prednisone (was 50mgs for 3 days, 40 yesterday- if I was taking my taper properly, I should be on 5mgs right now.)
-Seemingly very LSD minus lactose and organic cane sugar mainly for coffee. Been taking 10 Salmon Oil pills, 2000 - 4000 IU Vit D and about 1250 calcium all with no starch daily.

And I'm currently terribly restricted due to SI joint inflammation.

Anyone have any suggestions?

I need to make an edit:

This is so unpredictable that I went golfing yesterday, went to the gym (NOTE I did not strain anything in those activities) and I can feel it, to the point where I think I could be completely incapacitated today (I'm using my cane to get around), or I could even make it out to the golf course again, so weird...it makes me think maybe I don't have AS, just rib inflammation at night that keeps me up and SIJ inflammation night and day sometimes to the point where I cannot move.

Pred used to work,
NSD seemed to used to work...
Now everything is random and unpredictable to 5 minute increments, kinda like how LOST ended up...

"kinda like how LOST ended up..."

Aw, Adam, you have AS... and it does not sound good. Those are pretty extreme sweeps to happen within the same day, but not unheard of. I think(?) it could be that you may be aggravating your inflammation while golfing etc. without realising it or feeling it in the moment? That aftermath pain can be grim.

Hmm, I realise that you're trying to avoid this route, but why not give remi a three month trial. If it doesn't work for you - then you ditch it. However, if it does work for you, then you will have information relative to your own situation that you can use to evaluate risk vs benefit. Making a decision on risk vs benefit is a very personal one, but without knowing the potential benefits, it would seem a difficult one to weigh? Just my 2 cents.

Whatever you do, I really really hope you'll be feeling better soon. That SI joint pain lasted 24 yrs for me, non-stop (pre-remi). It is hard to escape it.

Hugs!!
mig

Thanks Mig,

I am going to actually try Imuran. What do you think?

Um, I have never tried Imuran so I can't offer any insight there. Trying different stuff until you finally find what works well for you, seems like a good plan to me! That is basically what I did (ditching any that gave me side-effects), and I think it's what most of us do in the end. Nothing stopping you from keeping on the LSD while you do.

Sometimes it takes a combination to get the monster under control.

this is 'just an idea' ok? if you are LSD, did you eat at the golf course? have a snack you normally dont have? anything out of the ordinary in which you didnt read a label? i know it may not be the cause but if you veer of your reg diet that could be a food related flare. for me its not 'starch is starch'. some starches are worse than others and same with refined sugars. i have a much harder time w/ cooked sugar. again, this is simply just an idea. sorry you feel terrrible :[

Hey Adam,.. I just searched back through some old emails and sure enough, Imuran is the med that has been helping an old friend of mine with his severe crohn's. He still can't carry on without prednisone however, which he's been on and off (mostly on) for most of his adult life.

Just be aware that you'll need regular blood tests to keep an eye out for problems.

Good luck!

I know, I'm going to get a blood test today before I take my first dose.

I eat only organic food and I read every label. I never eat out. I prepare everything I eat unless its a handful of walnuts or almonds or grapes. I did however recently get these bags of crispy pineapple, which is non GMO pineapple freeze dried. Veggies are almost always raw (broccoli or a little red pepper sometimes a couple raw carrots) or rarely lightly steamed. I eat only the things that didn't bother me for an entire year, or the organic equivalent at least.

Broccoli is one of those foods that my friend has to avoid, along with popcorn etc etc etc. It's the little bitty bits that can apparently get trapped in the intestinal villi that cause him trouble, if I remember correctly. Just thought I'd throw that out there in case you haven't experimented in that direction.

I ate broccoli for a year without any bad effects. That's all I know. Anyone here know that they get crippling AS from eating raw broccoli daily?

hi adam,

my stepfather with crohn's had a lot of success with asacol for many years. but the doctor took him off the asacol (not exactly sure why) and now his crohn's is flaring again to the point of internal bleeding, so now he is considering remicade.

the things he could NOT eat / can not eat: any "roughage" that could get trapped in his messed up colon: corn, the skins or seeds of any fruits or vegetables, raw vegetables, nuts. he can eat very well cooked brocoli and other well cooked vegetables as long a they have no seeds or skins in them. he can heat smooth nut butter. but the roughage, he has to completely avoid.

hope you are feeling better soon