Thank you........
Thank you Old Hat. I have a growing list of questions to ask at my first appointment with a radiologist at Vanderbilt on Friday. Unfortunately, though my tumor is not malignant, it is not slow...
Hi guys, my UC is currently in at least symptomatic remission on 30 mg of Rinvoq. I started it Nov of 2022, with a bit of a flare that put me back on 30mg from the 15mg after loading dose. I am...
Thank you Geezernow and CCinPA. It was really rough. I honestly don't know which was worse, though, brain surgery, or the prednisone mistake that landed me in the hospital in the first place. I have...
Can you get your primary care doctor to run your ferritin levels? Sometimes anemia isn't to bad on blood work, but our ferritin is low enough to need iron transfusions. I have needed them two...
I went digging for studies to back up what my GI said. Beave a while back posted something similar, so I figured it had to be findable. I found two links. I still need to read the more detailed first...
My last labs were good on the cholesterol front....
Hi BaconGirl. I do remember you well from around 2017 when I joined after my diagnosis. I read tons of people's posts to learn. I haven't posted much over the last few years myself. I did pretty well...
I had consistently elevated eos numbers after being on Entyvio for a while. I also had antibodies to Entyvio, and continued to flare on it. On other medications my numbers have sometimes been low....
My GI told me the same thing Beave said about newer studies showing nsaids are not that risky for UC. I had to take 800 mg advils after my brain surgery, and my GI just told me to stop as soon as I...
Hi all, I started Rinvoq November 8th of 2022. I used to post on here quite a bit, but I had quite a health detour that took over my life as I had brain surgery 9.21 to remove an almost 1 inch tumor...
Thanks Ipoop....
I see my signature did not update. Only on 20 to 30 mg of hydrocortisone for secondary adrenal insufficiency from pred use, not pred....
I remember reading about a new UC med that was being approved. Anyone know if it is available in the US now, and what it was? Flaring on Stelara now.......
Need to update my signature-I am on Stelara currently, theanxiousaries....
I had a lipase of 14000 from Balsalside Disodium. My GI had me try enemas later as he said they are only about 10% systemic. I used them for about a week and a half, and quit because I started having...
What medications are you on?...
I didn't get worse when I switched from Entyvio to Xeljance, but I didn't get particularly better. I tried going down on the dose, and immediately had to go back up to max dose. I flared badly after...
Since this is a thread about questions about surgery, mine is, what happens if you need colostomy bags, and you lose insurance? That part scares me should I need surgery one day....
Hoping for both of us!...
I was premedicated with steroids and tylenol....
What a relief!...
TP177-tapering off of Prednisone gives me terrible fatigue....
I had warning signs-mucous, some diareah. I have often wondered what would have happened had I been diagnosed before things reached the raging point and I ended up in the hospital for a week. Having...
I just started Stelara this week. Was searching for other Stelara users myself. I developed a rash during the infusion that was brought under control with Benadryl and Decadron. I wasn't sure if I...
I had my Stella loading infusion today. I had a twinge of heartburn chest pain before they started the infusion. I am on 20 mg of panterazole because of esophageal errosion back when they scoped my a...
GI says stop Xeljance for only 3 days. Still waiting on infusion as they were booked out for 2 weeks....
Thanks for the info on half life. It didn't logically make sense to me since it is a daily pill. I assume she will call me next week, as I don't think they work on Friday's. Stepping away from it, I...
Good to see you guys!...
My GI and I really have gotten to the point where I go to my appointments and he and I are pretty much on the same page. I started flaring back in October after having been on Xeljance since July. I...
I do sometimes forget, but I usually take 5k iu a day to get my levels in the low 30's....
I hover around 100 lbs thanks to UC, and as you can see from my signature have had a history of med reactions. The doseage is the same for everyone. I started Entyvio in January, and was flaring...
I have family that are very sensitive and have a corn intolerance. They avoid citric acid because commercially produced citric acid is often a by product of corn. Are you bothered by corn? What is...
I have had acute pancreatitis from a reaction to medication. Based on that experience, I have since identified a small window of time where I was having some possible mild symptoms. They resolved on...
Hi, I can really relate to your reluctance to change. I knew that Entyvio would likely quit working at some point because I developed antibodies pretty early on, and had to switch to every 4 weeks....
My understanding is that is the same as Qing Dai. I order mine from Accupuncture of Atlanta. It is a powder/granule, and I put it into capsules I get from Amazon. It's only $20 there. I have seen big...
I have never had the slippery elm help the colitis, but have had it help with reflux. Glad you got some relief....
I keep seeing plantbase diet. Completely vegan?...
Thank you poopydoop for the link. I only went down on the dose for about 5 days. Almost emmediatly started having more issues, so I am on max dose for at least 6 months. I was given a silica...
I had a lot more pain this time around with my most recent flare. Have you been prescribed something like Dicyclomine? It is an antispasmodic that targets the gut. It helps me with pain. For me...
Thank you for your thoughtful response, Jane974. I know I could get to the point where surgery is on the table, but I am not there yet personally. I think you are so right about combos of meds and...
Hi guys, I have been on Xeljance since July. I was doing decent up until about three weeks ago. Averaging 8 times a day, bleeding, urgency, pain, the drill. My GI ordered stool tests, and bloodwork....
I just am dropping a line to say I understand the discouragement. Flaring on xeljance myself. I have been on it since July, though....
I am coming up on three months. Still at higher dose, not flare free. That has been my mo on pretty much every medication, though. Only thing is it took me longer to kick a cold....
Thank you noodlesnoodles. I am taking xr, and I will check out the link....
Thank you poopydoop for your detailed reply....
Hey guys, I have been reading over old threads, but I still have a few questions. 1. I am seeing some people talk about the dosing be lower for RA than it is for UC. Are some of you staying at higher...
I have Quest only for in network labs. After a fight with my doctors office, I got them to use Labcorp. Even though Labcorp is out of network for me, my insurance only allowed 25$, and I prefered to...
I have to be super careful not to get dehydrated. I won't feel thirsty, have dry lips or anything, but and afternoon or a day a bit low on water will do that for me....
I have one, but have never used it. In my most dire situations when I cannot hold it, I don't have time, or the composure to talk to anyone about anything....