I started the LDN a few days ago. So far I haven’t noticed any major side effects. If anything I’m a lot more tired and lethargic through out the day, and I seem to have a pretty consistent headache...
Yes I have spoken with the manufacturers for Uceris at least and I didn’t qualify for the assistance program.. i couldn’t remember why.. I wasn’t aware if Remicade has something like that? I know...
Has anyone here had any success with trying LDN? I convinced my GI to let me try it in the meantime while we are fighting with my new insurance company to get my remicade approved. It’s been 7 weeks...
You are all so kind and supportive! It means a lot. I do think after being sick for so long, I have forgotten what normal feels like. I haven’t had a scope in over a year, but the plan is for this...
I appreciate all the replies! I have not tried methotrexate yet but I will mention it to my GI. I’m open to the idea of trying the other drugs, I just wasn’t sure if it was worth stopping something...
Unfortunately I’m allergic to mesalamines so we aren’t able to add those back in. I was on mercaptopurine for 6 months this year and my liver enzymes were up dangerously high so we had to stop them...
Hi everyone. I’m curious to see what everyone’s thoughts are on when we decide Remicade is not helping enough to justify the possible side effects. A little background.. diagnosed at 17 with severe...
Thank you all for your replies! I pray to start my meds again soon as unfortunately that’s been the only thing to somewhat get my stable. I’m currently reading into all the supplements suggestions...
Hello all... I was wondering if anyone had any insight on natural remedies to curb the start of a flare up. I was most recently on Remicade 10mg every 4 weeks with mercaptopurine and was close to...
That’s another concern of mine. I’ve been flaring pretty consistently for almost 10 years now, so days worse than others, so I wonder how far gone my colon already is. I went ahead and requested that...
Both of yalls input makes me feel a lot better. The brief information I read about 6mp and the bottle itself indicate that it’s dangerous during pregnancy, so I assumed so. I’m happy to know that I...
I will try to get my dosage down to every 4 weeks instead of 6 weeks. I do fairly decent in that time frame.. I’ll take 6-7 BMs a day over 15 or more.. I have never heard of cyclosporine. I will...
Yes Remicade is the only UC Medication currently.. I’m not sure what other options I have other than mercaptopurine, as I’m allergic to mesalamines, and have lost a response to steroids. Is there one...
My insurance didn’t cover Remicade at all initially. So the fact that we went from a half dose every 8 weeks to double dose every 6 weeks, I’m happy with. It wasn’t too big of a fight. But that’s my...
Hi guys... Quick backstory. I was diagnosed at 17 and I’m now 26. I’ve only had one 6 month period of remission in that time. I have severe pan colitis . I have been on Uceris and Prednisone, which I...
So to preface my insurance does cover the Humira and whatever doses necessary, however after 2 months of use I began to flare again. I do not have antibiodies built up and I do have a therapeutic...
I personally prefer the pen injections versus the idea of infusions.. The pens allow for more independence. I will call my insurance company again, but I do recall one rep saying Remicade was...
I noticed it said really only for use in Crohn’s disease, not ulcerative colitis... so I’m not sure why she’d pick that as an option for me? I don’t want to go on something just because it’s the only...
So I did my flex sig last Tuesday and got the results back... no infection, no cmv etc. however active colitis despite therapeutic levels of Humira in my system. Results said “diffuse chronic active...
Okay, I was kinda terrified of reading up on CMV and what it sounded like. I’m very cautious about things like That and it made me freak out that I might have it.. It makes me feel better that it’s a...
I believe I’m pretty badly inflamed and that’s what’s causing the symptoms. Is there another way to test for CMV another than a flex sig? If I opt for sedation it sounds like I’d be out another day...
Is it painful? This may be TMI but after being in flares for so long and progressive diarrhea I have hemorrhoids pretty bad as well and it’s pretty sensitive down there :( I’m kinda nervous about it...
I received my test results from Prometheus. I do not have an antibody built up and I do have normal amounts of Humira in my system. My current doctor said she isn’t sure why I would lose my response....
Y’all have all been so helpful.. sounds like UT southwestern will be my next go to! I will still keep on with my current GI and hopefully get some good news next week. I’m open to keeping up with...
I may just set up a consult to get a second opinion. I’m not really in any severe pain at this point. Just very uncomfortable with 10-15 extremely watery BMs a day. I have urgency but I can mostly...
That makes me feel a little better. A few people had suggested the hair loss was due to the extreme flare and weight loss in December. I’d say the hair loss started around March so that would be...
During my hospital stay I never responded to prendions and I was on 40 mg for over a month then weaned off about a month after being released, so I was off the end of January. I’ve been only on...
I know it sounds “vain” but evenay my sickest I still look okay with this disease. Most people say “oh but you look fine, how are you sick?” Which can be very frustrating at times. But I guess the...
Yes I am actually in DFW area andwpuld love new GI suggestions! My doc only wanted me on Humira.. I was weaned off of Pred shortly after being hospitalized. While in the hospital I lost my last 15...
So as a preface, I’ve been experiencing a pretty constant UC flare since my diagnosis in 2010. I have been on Lialda, Asocol, Mecaptopurine, Imuran, Sulfasalizine, Uceris, Prednisone and now...
They sent me home today. They believed if I can do my best to eat and drink on my own then I could try it. I'm extremely weak still so I'm staying with my parents and taking the week off from work to...
They haven't told me if they do have a portal... :( but levels are all stable according to them. Ultrasound came back normal. They did another bacteria stool test with came back negative as well....
I'm trying to get my flight refunded as we speak.. it sucks but it's part of it. They had me do an ultrasound today and asked if my gallbladder had been removed, which it has not. I have no idea what...
Well I just did my 4 doses of Humira. I only did 1 myself and ending up not pressing hard enough and it leaked on me... I'm hoping that doesn't effect my results :( they were still very cold and the...
I was initially on Uceris, then after flaring immediately I tried it again for another week which to no avail.. then they switched me to oral prednisone for 4 days and since I've been in the hospital...
I wondered that myself? I just feel like if I'm not improving, that we would try some hard hitters. Does Humira work that quickly?? I was expecting it to take weeks before I saw results. Also if I...
My inflammatory markers are still high. They have tested for c diff and everything has come back negative. A Ct scan showed I had severe swelling they thought was a blockage but came back okay. They...
Hey guys, I wanted to get some input/advice on a current bad flare I have going on. About 2 months ago I started a round of Uceris to try and tame a flare. It took about 3 weeks but symptoms finally...
I knew it was a different brand because it was packaged in a box with the "pop out" packages inside, where as the other brand was simply package in the typical orange bottle with white lid. the pills...
No thats quite alright twiggs! It may have been a little longer than a month, but I know I was not on it for 3 months. I want to say 8 weeks max. My symptoms practically disappeared a week into...
So, I started 6-mp along with Uceris (which was a god send-just as effective as pred, but no side effects!!) back in march. I was doing great and weened off of uceris after a month and have been...
I LOVED the uceris. I felt awesome.. Had energy and no side effects. I also wondered why this couldn't be used at a maintenance drug.. I never had the cravings, mood swings, moon face or other side...
How bad did yours get? Terribly noticeably? Is there any shampoo I can use or supplement?...
I'm sure Its been posted before but I figured I would see if theres any new info. I was diagnosed with Pancolitis (ulcerative colitis) 4 years ago. I had a bad flare up in winter and started a new...
Canada Mark, That's exactly how I feeling still on the diet. So I'm glad I wasn't the only one! I will definitely give the WOO/RS a shot. I'm willing to try anything at this point. I'm ready to feel...
Would the potato starch be okay since scd says not to have any? I'm just trying to stick with it as best as I can. But i know everyone has to modify here and there. Some one also told me about...
3 days of torture haha. I didn't eat that badly to begin with but I did have my fair share of bread, and sweets. That's the hardest. And really what's getting me is the bleeding getting worse. I...
Well I did the intro diet for 3 days. It says 2-5 suggested days. And then I went into the other foods....
That's what I'm worried about. I don't know if a week is too soon to tell or if I should just stop or not.. A lot of people say some feeling worse and have withdrawals but I don't think that's my...
I've been eating mainly fruits and cooked veggies with either tuna or chicken or turkey, organic peanut butter but that's really it. I've been staying on regular meals and eating plenty. And when I...