Hi there, I have ulcerative colitis and have been in a very severe flare since the end of August. Since that time I've also been dealing with enormous anxiety about my condition. I have been on...
Spring, I am on 30 mg down from a high of 60 mg when I started on it at the end of October. I know what you mean about the mind, sleeping, etc. It's so challenging to be on it....
I am on 30 mg of prednisone, waiting to start Humira in two days, and really struggling with anxiety. I have battled anxiety and depression on and off in my life, even in remission, but I feel like...
I have been on prednisone for five weeks (my flare started at the end of August) and have been struggling with appetite. I have no desire to eat; sometimes it even feels like food aversion. I've been...
Thanks to all for your support as always. I am scheduled to get my vaccines today before beginning Humira next week and would love some counsel about next steps in my treatment. The flare I'm in...
Thank you so much for that validation that I am not crazy and that I just need to find my way through like everyone else does. I have had multiple stool tests, all negative. I had small bowel testing...
@RedKoolAid, thanks for that. I had a few good days with solid BM and no blood or mucous so I was authorized to taper down to 40 mg of prednisone from 60 mg, which I had been on for a little over a...
Would I need to take the shingles vaccine before starting the Humira? I was told by my PCP's office today that the pneumonia vaccine is two doses eight months apart, so that's also not something that...
Thanks all. You're right about asking for help. UC is really humbling that way. Being sick always feels so vulnerable. For the first time in my life I'm telling people in my life I even have UC,...
@Poppie, thanks for that. So glad to hear that Humira has helped you and that you're feeling better. @FlowersGal, also great that a biologic has helped you. My kids are 11 and 14. We homeschool them,...
I've been posting lately about my latest flare, the worst in my 27 years with UC. I am 40 mg of prednisone and awaiting a start of Humira, hopefully on Monday. Stopped taking Asacol HD and enemas...
@iPoop, I did have a full panel of stool tests about four weeks ago. All negative. I just got off the phone with my GI's nurse and she is going to look into seeing if stopping all 5-ASAs for a few...
Thanks for those supportive responses. Gives me some hope! Meanwhile a question. I am now on 60 mg of prednisone, 4.8 g of Asacol HD, and melamine enemas. During my most recent remission I took 2.4 g...
iPoop, thank you so much for the quick response. You are one wise soul indeed. I love how you keep us laughing with your signature line. I like the idea of just starting with "let's heal" and not...
I have been in a flare since the end of August and have gone through three weeks of Uceris (oral and rectal) and am now on 60 mg of prednisone and Asacol HD with mesalamine enemas. The last time I...
I'm sorry you're feeling this way, too. I'm 47 and have had UC since I was 20, several flares and several remissions, and I am currently flaring badly and experiencing a lot of the emotions you...
Thanks for all those responses. Since I last posted I came off of pred and went on Uceris. I was doing a bit better and then went into denial mode with what I ate yesterday and am seeing blood and...
Hi all, I did end up going on 30 mg of prednisone. Since then I am experiencing total diarrhea, further weight loss, and weakness. I met with a new GI doc and am switching over to him. He put me on...
One more thing: Should I try psyllium husk powder and eat more? When I flare, I get in this "food is the enemy" mentality which it not helpful......
@iPoop and @quincy, thanks so much for the quick responses. I don't think this flare would be considered so severe as to warrant IV anything right now. I often go all day without a trip to the...
Hi there, I haven't visited this forum at all in the last several years because I've been in symptomatic remission on Asacol HD (two tablets twice a day) and mesalamine enemas as needed. I'm 47 and...
What is the difference between Lialda and Asacol HD? I have been on Asacol HD for three days and have experienced severe gas, intestinal gurgling, abdominal cramping and loose stool not consistent...
Thanks for all the info, everyone...very much appreciated. Quincy, I am on nightly rectal meds for left-sided colitis--have been for months now--and just starting the Asacol HD to sub for the...
Has anyone here been on Asacol HD for longer than the recommended six weeks? If so, at what dosage? 4800 mg per day, which is the dosage my doctor prescribed, seems high. Does "HD" stand for "High...
Thanks for the ideas. I'm going to call the FDA and the manufacturer of Asacol HD and will report back what I discover!...
Thanks for those links, Sara14. What's most disturbing to me is that most people on Asacol always take more than six tablets a day maximum recommended daily dose talked about in the Environmental...
The letter I received today from Express Scripts says the following: "This letter is to inform you that the drug manufacturer Warner Chilcott, LLC will discontinue further distribution of Asacol...
So this morning I had blood and mucuous after having begun to taper cort enemas last Friday (every other night). I'm currently taking 4 Asacol 3/x a day and a Canasa suppository in the a.m. I'm on...
Thanks, DBwith UC. I was only on them for ten days before starting the taper. I spoke with my doc's nurse and am expecting a call back as to how to proceed. I appreciate your talking me off the cliff!...
Hey all, I am tapering off the hydrocort enemas. I think I went two nights in a row without taking one (instead of every other night) and now I have the shakes, a headache, anxiety, etc. Just put in...
I have pancolitis and am also taking 4800 mg of Asacol a day. Trying to avoid oral pred if I can. Did really well on the first day with hydrocort enema; second day gurgles and cramping and little...
Thanks so much, DBwithUC! Very helpful. I guess my logic that trying the cort enema before taking oral pred is not all that off base....
There are 100 mg of hydrocortisone in the enemas. An average dosage of prednisone, at least to start, is 40 mg. Doesn't that make the total dosage in the enemas a bit high, especially depending on a...
Has anyone heard of or taken Budesonide? My GI offered this to me today as an alternative to prednisone if I end up needing it -- for now I am switching to hydrocortisone enemas to see if I can get...
I love this idea. I traveled to and lived in Quito, Ecuador--even had my sulfasalazine (pre-Asacol era) sent down to me when I needed it. I married a wonderful man and gave birth to two healthy...
Thanks to all for the thoughtful replies as always. I have pancolitis. I just added psyllium husk capsules to the mix and decided I would give myself until Friday to call my doctor. Still passing...
I'm so sorry to hear of your flare and hair loss. During a very bad flare last year I went on both prednisone and Asacol and experienced a major hair shedding after discontinuing the pred and three...
Hi all, I've been away, in a year long remission...and now I'm back! I was diagnosed with colitis 22 years ago at the age of 20. My case has always been on the mild/moderate side, and until last year...
It may be that .86% of patients on Asacol report hair loss, but I am one of them. I'm now dealing with what seems like permanent hair loss from either the Asacol or prednisone. I'm grateful for being...
Here is a link about this from QuackWatch if anyone is interested in a different point of view about fillings: http://www.quackwatch.org/01QuackeryRelatedTopics/mercury.html...
Hi quincy, Losing very little hair every day now, but zero no growth. No patches, just throughout. Hair and eyebrows. Off pred since mid-August. Stopped taking Biotin about a month ago because I felt...
That well could be--I also got diagnosed with dry eye last spring when I was really sick, so maybe I'm just now experiencing some kind of auto-immune stuff. It's just odd because I've had colitis for...
Thanks for the replies and advice. Thyroid came back normal. journey2health, when you say a year and half, are you saying that there was no new growth during that time, or at least until the end of...
I went to my Ob/Gyn nurse practitioner today to talk about my hair loss to see if there was some chance it was related to perimenopause. She said definitely not, especially since it came on so...
It's mostly that outer third. I've had my thyroid checked at some point in the past several months but maybe I should have that done again....
Has anyone here also experience loss of eyebrow hair along with hair loss on the scalp? Mine are thinner than they were before....
Although I agree with and commend everyone who makes lasting and healthy dietary changes, I have to say I am in the camp that does not see the food/disease connection. There are plenty of people who...
Maybe 1/2 is an exaggeration...I just judge by the thickness of what my old ponytail was. You can't really tell that's it's thinner from looking at it--but I know what it once was and that's what...
I am in the hair loss club, too. I'm still trying to figure out if it's a) the pred that I got off of in August b) the Asacol I've been taking since June or c) some other reason, like hormones (I'm...
Hi Maryloo, I was diagnosed with UC at the age of 20, which was 21 years ago. Since then I have had two normal pregnancies and two healthy children. I had great support from my GI doc throughout my...