HI Dave-- How are you doing with Xeljanz? Have you had any gnarly side effects? How bad was your disease prior to starting therapy compared to now ? I'm one of those been-on-every-biologic types and...
i know i'm late to this fistula party, but i fear my day has come. i have a tiny opening near the lip of my vag (basically near the undertruss, haha) that has had some gas coming out for about a...
I had no side effects whatsoever. I felt healthy as a horse and I hope you feel the same....
Got my first dose today. 270 mg, DO YOUR THING! I'm pumped....
a lot of it has to do with the person too. just--how much you're willing to put up with. i was diagnosed at age 15, and now am 28 and am (knock on wood) bagless. my dad, on the other hand--diagnosed...
Hello all! Does anyone know if their infusion site or doctors office allows "buy and bill" of medications? I have found a way to get my Stelara injections covered, if I am able to get them via a "buy...
It's approved for psoriasis, so she wrote it for me off-label. Don't be scared of Tysabri. I stopped taking it because it stopped working for me, not because it made me sick. Tysabri made me feel...
I've been going for 15 months.... :'(...
Just an update--my request was rejected by my insurance company. We're going to appeal, but its onward to the Johnson and Johnson Patient Assistance Foundation App. Sigh. This is so frustrating. I...
tinxabella, any info you can get would rock. sr---we're sending over that abstract to the insurance company. they asked for it, so i guess that means they are at least open to the idea of considering...
maybe its all the prednisone but your post brought tears to my eyes. i need a miracle, too. did dr. sandburn write on your behalf to your insurance company?...
why not Tysabri? I know the side effects sound scary but it gave me three wonderful years free of prednisone, MTX and all the crap i'm taking now....
Thanks so much lamb. I'll keep you guys posted. I'm DYING to get off this prednisone....
i'd say it'll go away as much as 50% once you hit 20 mg. I too have a genetically round face (thanks Sicily) but on the prednisone I just look ridiculous---a big fat head attached to twig arms and...
my highest was 88. It comes down when you aren't flaring. Haven't had the pleasure of hitting triple digits yet...yeesh you guys ;-)...
Hi all, So my doctor agreed to write me for Stelara, rather than risking a trial and not getting med. Now the question is, how to get it approved. I have both private insurance and medicaid, and my...
Hey Bosnianboy, I hope this saves your colon. I am like you, I would stop at nothing to keep myself from getting a bag. I can't wait to read about your experiences with the transplant. Go get em....
I want to agree with this, but for every person out there singing the praises of LDN, it's easy to forget that there are a lot of people from whom LDN does not work...like me. I convinced my doc (a...
Hi! I'm so sorry to hear about your rash. I hope you didnt have to discontinue. I was wondering if you could tell me how you got your insurance to approve the med off label? Thank you so much and...
Hey Insofla.... I put a tablespoon at least in my water glasses. Sounds like I should do less water and more l-glutamine? As I'm really trying to cutback the D. I just knew that there are certain...
Hey all, so in addition to all the crazy dietary changes I'm trying to make, my doc is trying to get me enrolled in the Stellara trial. Anyone been on it? Better yet, anyone been on it and had any...
Hey InSoFla, So the LDN is giving me the crazy dreams :) I haven't gotten any worse, but can't say that I've gotten much better. I'm trying to single out foods that cause me trouble. But I think I...
InSoFla-- can you elab a little bit on the food-combination stuff? i went to the website you provided, but you have to pay money to get access to these documents. do you have access to these...
just ordered some insofla. im literally down for anything. does this help with healing? (the glutamine powder i mean)...
Hey Paleo-eaters--- how soon after you started Paleo did you begin to feel better? Were you able to eat Paleo even with all the active D? I miss eating veggies sooooo much and would love nothing more...
Dude---get yourself to a hospital. It could just be passage of a hunk of scar, but if you're in pain, go to an ER. At least you'll get pain management, especially if you're having an honest to god...
Oh! Incipiently: pmedic---my doc put me on rowasa AND cortifoam today, I start tomorrow. Not sure logistically how this is going to work out. Is there a time of day you find better for one than the...
Wow insofla--thank you for your amazing story. I'm going to call tomorrow and see what I can work out. Had my dilatation today and it worked. My colon looks *angry*....at least, 40 cm of it does. The...
Pb4 keep us posted. I can't wait to hear about your experiences....
wanted to give this a bump---c'mon guys, someone out there must have had a dilatation? feeling so hopeless :(...
I used imuran for eight years, and honestly I felt pretty crummy most of that time. It made me very anemic and I require an awful lot of blood transfusions (countless, to be honest). Now I'm taking...
So my stricture can't wait--it's too tight, and the obstruction is really uncomfortable. I'm having it dilated on Tuesday. I was wondering how long your dilatation lasted and if you had any tips for...
I'm taking 4.5mg with lactobacillus filler....
Well, tonight will be night three. I had a abd xray after my exam today (psych rotation, done). 8 cm dilated proximal to the stricture--so my dilatation is moved up to Tuesday most likely. I can feel...
omg avascular necrosis?! i'm so sorry to hear. i want to try SCD but i'm in medical school and trying to do a diet when you are never home to cook is just not really a possibility right now--except...
in combination with everything you see in my signature--i figure eh, what do i have to lose right? i'll try to keep you guys posted. this dd sucks....
Levi--does the VSL firm you up? I'm taking one pack a day but will take 20 if thats what it takes....
Hey guys-- for those of you using turmeric--how much do you take? i'm not talking a few here and there for good measure, i'm talking enough to give you constipation....which would be a much-desired...
Hey Mac, I think the rate of infection on Cimzia is similar to that of the biologics--and i see you've already dealt with the tysabri monster. hey, it can't get much scarier than that, right ;-)...
I think with Remicade, they can double up your dose if need be. When I was on it years ago, I got one dose on day 0, and was often given another dose on day 3 while I was still in the hospital. I...
Hi Stef, I'm currently on Cimzia, and I get headaches too. It sucks, but for me I've tried every other biologic (humira, remicade, tysabri) so i'm out of options. I'm on 30 of pred still and it...
sending positive thoughts your way. hang in there :(...
Thanks for all the replies you guys. Sounds this diet might be worth a shot, no matter how constricting it may be. Kind of having a crappy night, I just saw that I got a B in my surgery rotation and...
Im getting desperate. My stricture is not improving, I'm doubled up on cimzia now (two shots every two weeks), taking MTX and 30 mg of prednisone. I'm wondering if those who are on SCD could comment...
I've been on Cimzia since October so far, not much in the way of improvement. Granted I'm not having a lot of extra-intestinal manifestations right now, but I'm also taking 30mg of Prednisone and 25...
Just wanted to give this a bump as I know we have some of the worst of the worst cases around on this forum---would love to hear about failure and success with the latest batch of experimental meds...
Hey manzyb, i actually didn't have any side effects on the tysabri. I know I was technically immunocompromied, but I wasn't taking any other medications, so my immune system did have some fight left...
If you have a chance at Tysabri--take it. After three fruitful years, Tysabri began to fail for me in Feb 2011, following my bowel resection. However, it gave me three amazing years of health that...
ugh, mouth sores. i used to get these alllll the time. I too am on MTX, but I had them long before I began the MTX injections...I am convinced they are due to a water-soluble vitamin deficiency. As...
Liquid meals man, that's the best advice I can give. I have gastroparesis associated with my crohns and liquid foods and deep breaths help. That and Zofran. I ate a hamburger and threw the whole...