Thank you for the reply! I also get random dry scaly patches of skin but also tossed that up as anther side effect... I will definitely do some research and perhaps schedule an appt with a...
Thank you! I wonder if it’s the drugs we are on or purely UC related. My doctor wanted to start me on steroids but I get horrible joint pain with that as well, so I am prolonging that as long as...
Hi everyone... I wanted to see if anyone experienced these symptoms or if it was unrelated to my UC flare. A little backstory... I recently made the switch from Remicade to Entyvio due to Remicade no...
I’m not exactly sure what caused this flare. I honestly feel as though I’ve been on the cusp for years, as I haven’t truly been in remission for 5-6 years . I believe I’m just used to feeling this...
I appreciate the advice regardless! I love to hear everyone’s insight. Unfortunately I’m allergic to mesalamines so I can’t add those in to my therapy, and the 2 times I’ve done mercaptopurine it has...
I really hope I have success like some of you have! I tried Humira first but failed after 6 months with no relief. I’ve been on Remicade for 2 years but never achieved remission. It definitely...
I guess I have forgotten what normal is like...😪 I pray Entyvio changes some things. Has anyone switched from Remicade to Entyvio, and if so, how long do you have to wait in between ending one and...
Hi all, I’ve recently posted about my Remicade most likely not working. I kept thinking I might be overreacting but my doc requested a fecal calprotectin test and results were over 6300. Normal is...
Thank you for all your replies! My doctor is pretty adamant that we start Entyvio . I’m going to remind them of the Xeljanz one more time before the switch is official. I thought Remicade was...
Interesting! I’ll have to ask about the Xeljanz again and why they wanted to use that as a last resort. I actually mentioned it first because I thought the freedom of pills and fasting acting nature...
Thank you for the help! Doctor seems to want to start Entyvio first, because apparently Xeljanz holds many risks in pregnancy. They said they typically try and avoid prescribing that in child bearing...
If I go the Xeljanz route, does anyone have an idea on actual cost? I looked it up in my pharmacy benefits and it does say that it’s a covered drug, but it’s $4733 for a 30 day supply. Does Xeljanz...
Thank you for your thoughts! I think the doc is leaning towards Entyvio or Stelara. However I’d love to have the freedom of pills that Xeljanz offers. Is anyone aware which of these is the fastest...
Any suggestions for starting the diet, and do you have any meal plan suggestions? I have tried SCD in the past as well as another that I cannot think of the name but I didn’t see results with either....
Hi everyone, I’ve finally come to terms that Remicade is no longer working for me. I am on the highest dose every 4 weeks so I cannot bump it any higher. It worked decently for 2 years but I never...
The flex sigmoidoscopy is around the same price. I haven’t met my deductible which is $2000 then coinsurance kicks in at 80/20. The colonoscopy would be closer to $2500 and the flex sig would be...
Are there any alternatives to a colonoscopy that can diagnose the level of inflammation in UC? We have come to the conclusion we don’t think Remicade is working for me ( 😭😭 ) as I only get relief...
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...