How did UCERIS work for YOU?
(also called Budesonide)
With the previous posting from Alice on this potential alternative to “prednisone”, I think its for sure time we add a new “medication review” for UCERIS.
Here is a direct quote from the UCERIS website:
“UCERIS is a different kind of treatment for ulcerative colitis. It is specifically designed to target the colon and helps eliminate the symptoms of UC, with a safety profile similar to placebo (sugar pill). UCERIS is a prescription corticosteroid medicine used to help get mild to moderate UC under control.”
So, if you have experience with UCERIS, please fill out a review regarding your experience via the button below!
And, if you are interested in reading Alice’s story which talks about UCERIS, you can do so via the link to her story her – Alice’s story.
Search Side Effects Below:
CLICK HERE to add any side-effects you’ve experienced.
Very few side effects with oral uceris. Much better than being on Prednisone. Increased urination at night. Low appetite & nausea. Also took a solid 2 weeks before it fully kicked in. Some relief after 3 days, but 2-3 weeks before it fully kicked in.
Mesalamine, VSL #3, Omega 3 fish oil
October 16, 2017
Frequent night urination, insomnia, increased appetite, reflux.
Side effects started once I started taking Lialda w/ Uceris
October 12, 2017
heavy night sweats, frequent urination, very bloody stools (from 3-4/day when I started to 12-14/day when I quit) thrush, facial hair, leg cramps (especially at night), interrupted sleep (awake two hours at a time)
Lialda - 2 /day
August 21, 2017
Increased, soft bowel movements (sometimes right after injecting) and they are SUPER stinky!! I don't see anyone else reporting this...
July 21, 2017
swelling and pain in both ankles
July 19, 2017
Extreme fatigue and very vivid dreams.
I take Lialda 2 tabs per day. Krill 500mg per day, Nutrí Calm one per day. I also OxyPowder 3 tabs every other day.
June 4, 2017
Weight gain, vaginal bleeding, increase facial hair
May 17, 2017
medication helped my symptoms, but after 4 weeks had moon face and swelling in ankles. Also frequent urination at night (5 times most nights). I have also had weight gain. Dosage was 9mg per day. Discontinued medication.
Lialda, gabapentin, verapamil
May 2, 2017
April 25, 2017
I have UC and have taken Uceris for 18 months continuously and it has helped somewhat. 5ASA, imuran, etc. have not worked on me. Side effects include, sleeplessness, tired, weak legs and I am always hungry. I am trying to wean myself of Uceris by taking it every other day and I am experiencing itching symptoms on my things and arms.
March 30, 2017
Even after one week on the med, still in severe pain, bloodier stool, extreme nausea (nausea meds help little). Patiently waiting...hoping.
March 2, 2017
Headache, achy joints, dizziness.
February 22, 2017
Stomach pain, fatigue
February 11, 2017
February 1, 2017
Had to get off Lialda because of kidney damage. Started flaring so I tried Uceris for 4 days. Bad idea. Debilitating cramps every time I tried to eat and no change in the blood amount. Glad it worked for some. It contains lactose, which I am highly sensitive to, which many or may not have been the problem.
Asthma meds symbicort, albuterol, zyrtec.
January 10, 2017
Pressure on chest, blurry, restless, weird jittery feeling in body
January 4, 2017
Hives. Would start in the evening under arms and over night spread all over torso. Mild headache
December 27, 2016
increased appetite, weight gain, bloating, gassy, puffy face, hair growth on face
December 14, 2016
Frequent urination - up every 2 hours at night. Had to stop after 2 months. Also caused my blood to get very 'thin'.
December 11, 2016
Loose stools, itching on top of feet, swollen leg, liquid leaking from swollen leg, tired, mood swings
Ursodiol, azathioprine, bupropion, asacol hd
December 10, 2016
Been on this medication for a week now and I have noticed lesser blood on the stool, sometimes there is still blood though. I have also noticed itching of the skin mainly around my sides and underwear area (around the hips and lower stomach), red dots. I believe this is a side effect from the medication. My appetite is up and it also before my menstrual cycle, too. Which does not help. My face is puffy but not too bad yet. If this becomes worse with weight gain and puffiness, I will stop the medication. For this is why, i refuse to take prednisone.
November 9, 2016
I have had a difficulty sleeping, gained weight/moon face, night sweats, increased appetite as well as skin sensitivity.
6MP and Entyvio infusions
November 1, 2016
Uceris Rectal Foam Fever, sore throat, sneezing
October 31, 2016
This steroid literally put me in a flare.
Bleeding more than ever.
Bathroom 5 times a days.
Lialda- was doing 2 tabs a day but now off steroid back up to 4.
October 23, 2016
Worked well for me except for the big mood swings as well - strange to describe - this set in after 3 months of usage and I chose to tapper off quick during month 4.
October 20, 2016
September 15, 2016
Loss of focus
September 11, 2016
Uceris gave me horrible mood swings. I would be cool and collected at one moment and then the next moment I have the rage of the Hulk. I was so glad to get off it!
September 9, 2016
Swollen Ankles, Anxiousness, Trouble Sleeping, Stomach Cramping, Diarrhea
September 2, 2016
Weight gain, facial hair growth, diarrhea
August 27, 2016
muscle cramps headache back ache
August 22, 2016
Headaches and swollen legs.
Advair(for asthma) and
August 16, 2016
Nausea, headaches, dizziness, memory loss
August 15, 2016
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to ADD YOUR REVIEW:
Used it for three months and then switched to Stelara which is not doing well for me. Uceris did seem to work but it is a steroid and hard to stay with.
Hair loss with Uceris
Hair falling out by the brush full
It makes me incredibly angry/moody
Uceris for microscopic colitis
Decreased diarrhea immensely. SEffects: weight gain,vag bleeding,facial hair increase,moon face
It works, but really feeling the rage
Has been great in terms of reducing my flare and doesn't have as many side effects as pred, but unfortunately, it still comes with the rage - absolutely furious irascibility. Where normally, I'd just shake it off, I'm really struggling to not fly off the handle...
Budesonide 3 mg
I had C-Diff in 2015 from too many antibiotics given for kidney stones. Finally after app. 6-8 months, got rid of it, taking Vancomycin. The diarrhea continued, I had a colonoscopy, showing I had Microscopic (collagenous) Colitis. Dr. prescribed Budesonide 3 mg. tab each day. After 2-3 days, I couldn't have a bowel movement & was in pain from it. I have tried several different ways of taking from 1 each day to every other day. To no avail, I just can't stand the constipation.
I just found out that the Budesonide has lactose in it, which I have an allergy to.
I am a 79 year old female. Dr. just put me on Lialda 1.2 GM twice each day & Predisone10 mg.once each day. I've been on these two for two weeks & am still having terrible diarrhea. I have also modified my diet to exclude fiber, acids, etc. I wonder if anyone else had the constipation problem from Budesonide. Thanks
I am on my 6th and final week of Uceris. It has helped, but definitely has not stopped the bleeding. The side effects that I have experienced are insomnia, leg cramps and headaches. Was so hoping that this medicine would be the answer to my prayers. But it doesn't seem to be for ME.
Started using uceris back in December 2016. Its late January 2017 now and it seems like its helping my flare up but I think its giving me lower back pain and I have these big red swollen lumps all over my legs. I really can't give a review right now. I'll see you guys in another few months
Uceris-a double edged sword
Started with Lialda,added prednisone, then added Uceris, and was weaned off prednisone. I have been on Uceris for 4 months. All the steroids are starting to affect my body though. Tiredness and they have increased what was controlled high blood pressure, to the point the md will probably add more bp medicine, as it is now extremely high. Very frustrating. About 95% in remission, except when I start to get stressed about my bp, which doesn't help. Uceris is not a forever drug, I know. And I am determined to go the other direction, not add more UC drugs to my regimen. Any thoughts? The high blood pressure is really a concern. 189/90, so I will probably be going off very shortly here. It was good while it lasted.
Intially the Uceris seemed to help with my moderate UC, I noticed less blood. However as time went on, the blood returned. I used it just over two months. My appetite increased, I gained 10 lbs. even though I workout 5 days a week. I was extremely bloated and gassy. I am a thin person, so this was extremely difficult on me. I stopped 5 days ago. First I was nauseated and tired, but that is getting better daily. I have also taken Canasa and Lialda. None of which has helped. Going to gastro next week to discuss other options.
I have had an extremely positive view of taking Uceris for three months. I have had no side effects and I wish I were able to take it full time, but as it is a corticosteroid , I realize that is not possible. I was prescribed Uceris after terrible reactions to trials of (Canasa, Apriso, and sulfasalazine). I, unfortunately am in the small percentage who can not take/tolerate 5-ASA meds, a real bummer for me!! Uceris brought me back to a normal state of living. Now I have to figure out a remission plan without the helpful 5-ASA's that most folks can take. I do know I can count on Uceris for flare-ups. It works wonderfully well.
I was on Uceris for 10 days but the horrific gas (and pain along with it), increased acne, increased blood pressure and mood swings were not worth it. I stopped and am continuing with Lialda.
I have lymphocytic colitis - doc tried several other treatments including generic budesonide, to no avail. very difficult to keep up with an active lifestyle when you never know when you'll have an "accident". Uceris has given me my life back. I take only 1 tablet/day, which keeps the symptoms - diarrhea and massive flatulence - in check. Somehow, the twist of targeting the release of the medication in the intestinal tract makes all the difference. I can fly, bike, walk, ski, etc in confidence now. I have put on a little weight, but now that I am aware of it, I think that's controllable as well. I am fortunate that my health insurance covers the drug 100%.
micro lymp. colitis 7 days on 3mg no results no side effects besides dry mouth when bike riding.3 month precrip. of 3 2 1 $1800 my share $900.
Uceris rectal foam
Started on Uceris (budesonide) rectal foam for proctosigmoiditis on July 1 after having been on numerous meds (including Uceris oral) over past 2 1/2 years, with varying degrees of effectiveness -- but had never achieved remission during that time. Bathroom visits maybe 5-6 times per day, usually with blood.
Was pushing my GI to prescribe Humira, which he was reluctant to do. He prescribed Uceris rectal foam as sort of a last-ditch resort to avoid a biologic. I started on it July 1, 2x/day for first two weeks, once daily for next four weeks. Response was pretty remarkable both clinically and symptomatically. Very rarely have blood in stool any more, have cut bathroom visits from 5-6 per day down to 2-3, and on some days just once. Stool is semi-formed or formed. Latest colonoscopy shows noticeable reduction in area of inflammation to bottom couple of inches of rectum.
At end of six weeks, called manufacturer and asked whether six-week treatment protocol was recommended because it was inadvisable to take for longer. They said no, it was because original clinical trials lasted for six weeks. Discussed w/GI, he said it was safe to continue because it is a topical application with almost no systemic activity or side effects. This was fine by me, as it has given me relief and more of my life back.
Have now been on it for 8 weeks. Two days ago, I noticed a small rash on one side of my face. Since then, it has spread to other cheek, neck and behind one knee. Rash is red bumps, often in a line, itches a lot. I am pretty certain this is a reaction to the Uceris, as I had a similar rash with prednisone last year. In the Uceris prescribing information, skin reactions are listed as a possible but uncommon side effect, based on the clinical trials.
Will be discussing w/my GI soon, but have made the decision to reduce application to every other day instead of daily. I hope this skin condition can be brought under control because in all other respects the Uceris foam has worked better than all the other meds I have been on.
I have taken Ucerus for about a year. The past 6 months I have tapered down to one pill a week, cut in half x twice a week. I am having no side effects and am basically in remission.
Tried it on 2 different occasions with lialda. Last time I tried it GI said after 5 weeks with no progress, and he said it could take up to 8 weeks so give it a full chance. I did. Still did not work for me.
Quit after 4 weeks
I took Uceris for four weeks with no alleviation of symptoms. Like a post below, I am also unsure why my GI prescribed this to me if it is for the upper colon and my colitis is in the Redfin and sigmoid colon. With that being said and a colonoscopy later, my GI has prescribed me the Uceris foam today. Waiting for the pharmacy to call and tell me copay price, can only imagine.
Oh yes Uceris; hell no prednisone
I have been on and off Uceris 3-4 times as my gastro won't let me stay on it for more than 2 continuous months. It always seems to work and creates poop within just a few days! Yeah! Since I have no long term experience, I always revert back to my lovely active UC. I did not have any (or very mild) reactions like I have with prednisone. Can I say I HATE prednisone? Very little help in the poop department some but not so much to cheer about, weight gain, weight gain and more weight gain. I was a usual 145lbs at 5'9", diagnosed and got down to 120-125. 1st round long term prednisone up to 150, 2nd round up to 165, last round up to 195. Moon face and seeing my own cheeks in my normal vision was very annoying. This last round, thankfully I have been able to lose it much easier and down to 165. I see my gastro next month and curious about those that have posted about long term Uceris use. I do get sick so easily so maybe he is trying to protect what is left of my immune system. Seems I've tried every thing and NO long term relief. He has mentioned Humera(?) but seems hesitant to try it. I have active UC in my entire colon but do not think my pain is worth removing it. He dies t get me but I have learned to live with sometimes 5-20 trips to the bathroom a day, depending on if it's a good or bad day. Accidents few and far between, pain has been less frequent the last 5 years. Diagnosed 2002. Age 46.
Has any one experienced skin problems? My fire arms are horriable with bruises and blood that lays under my skin . My skin is like tissue paper anything I rub up against causes bleeding they look so bad I started wearing Sleeves that go up to my elbows. Can anyone help??
Please use Uceris coupon
I have Crohns Colitis and have been on Uceris for 5 months-- one pill a day following a severe flare after being in remission while on sulfasalazine for over 20 years. It helped me tremendously. I had no cramping whatsoever and very limited episodes of urgency and diahrrea, which could have been diet-related, as my diet is very limited which all sufferers of Crohns knows well. I did experience some fuzziness on my chin, difficulty sleeping, easy bruising, sleeplessness, and excessive hunger. I am currently on my 6th week of Humira and just ended my Uceris regimen. I am already going back to my pre- Uceris Crohns symptoms. Again, could be food-related, so I'll take a dose of citricel and give it another week before contacting my GI. Not sure what the next step will be since I've tried 6MP and Imuran, both of which my body couldn't tolerate. Anyway, PLEASE don't pay over $25.00 for Uceris. Use this coupon if you possibly can : https://www.uceris.com/tablet/savings. Good luck!
will never know how it works
I definitely see why some kind of controls need to be put in place by pharmaceutical co. My insurance won't cover the cost which is $5,370 a month. My sulfasalazine quit working and my colitis has gotten out of control.
Didn't make a difference
I was on Uceris for about 10 days with absolutely no difference in my symptoms (e.g., I still had blood at every bowel movement). My GI said it would only take Uceris one week to reach maximum effect, so clearly this drug just isn't effective for me.
That said, I have ulcerative proctitis, so it's a little strange that my doctor even prescribed this in the first place (since it's designed for release in the upper colon). I convinced him to prescribe me the Uceris rectal foam instead, but I'm not sure if I'll end up taking it because the copay is $150.
I've been on other steroids, including oral prednisone, cortisone foam, and a compounded budesonide suppository, but none have worked. (The budesonide suppository helped for a few weeks in combination with Canasa, but then stopped working.)
A tip: if you're interested in taking budesonide for colitis, ask your doctor about prescribing a compounded suppository. You'll have to go to a pharmacy that does compounding (places like Walgreens and CVS usually don't), but it'll probably be much cheaper than buying Uceris foam.
Uceris off to a slow start ...
After a very bad UC flare started in late February, 16' my doctor put me on Ucerus. I had been on Lyalda as maintenance and I believe the flare occurred because of the holiday/ post holiday return to eating like a typical a American, meaning not SCD! Beer, bread, cake, sweets, etc.
So I started Ucerus while also returning to the SCD diet, which I did on the past with good success. I have surely improved and can't point to any consistent symptoms but I don't know if it is the diet or Ucerus. Condition now is still 3 to 7 or more visits to the bathroom with urgency in the am, typically. But less blood, cramping and swelling. So I am better, but not without moderate symptoms.
I have a colonoscopy scheduled in two weeks so we'll see where this goes from here...
Uceris is for UC not Crohn's
Unlike someone posted earlier, Uceris is for UC. The other source of Budesonide is Entocort EC which IS for Crohns as it dissolves in the upper GI. Uceris does not dissolve till it reaches the colon. It's helped me to reduce my pancolitis symptoms between remicade infusions but generally starts to wear off after a week. I'll be switching to Entyvio as 6 doses of 10 mg/kg of remicade has yet to induce remission.
Long term user
I've been on it for almost a year. I just switched to a new GI who is getting me off of it because it's not supposed to be a maintenance drug. I've packed 10 pounds (belly area) onto my small frame although I do yoga and work out regularly. I'm halfway to a werewolf with the growth of facial hair (not charming on a female) and have moon face. It kind of works. I always go through bouts of blood, severe gas and mucous even on Uceris, but it does help with the urgency and frequency. Gives me horrible headaches and frequent urinary tract infections. I hate the side effects and want my face and figure back. Better than having an accident, but between this and the prednisone tapers...it wears on my self-confidence. My self-image tanked with the diagnosis, and all the meds just further strip away the dignity.
Uceris is a no go
Well, This would be the second time I have been given Uceris. The first time I took all 30 days worth of pills, I saw no change whatsoever., I changed my diet and took Prednisone for a while. I stopped Prednisone and was doing fine for almost 6 months. This was 5 years ago, since then I have taken multiple drugs but nothing works like prednisone. My doctor keeps telling it's a horrible drug and he needs to get me off of it. I take it when I have a flare-up then I stop for a while.
The only side effect thank god is waking up at all hours of the night. But I have been able to deal with it. I guess my only option now is to try Humira, I have to say that cutting out the grains from diet helps. Hope this helps, may be taking Prednisone first and then Uceris might work but taking it while I am having a flare-up has not helped. God bless, this is a horrible disease, I pray that one day they find the root cause for this and make a medication that cures it.
I had a flare up as a result of either food poisoning or a stomach bug. No one can really tell me which. I was given Uceris. I had to wait 24 hours for the drug to come into my pharmacy. I called and the doctor said I could take 3 of the other benezo drugs I had from the last year flare up. I started the drug on a Thursday. Friday I went to the bathroom 10 times but on Sat that was down to 2. The side effects suck but after resting all weekend they are much better. Side effects: sleepy. I have to be in bed when I take the medicine. That is contrary to most things I have seen online but I guess I am special. I am also taking Calcium 1000, vitamin D 1000, and Vitamin C. I think those are also helping me adjust to the side effects. I have a lot of energy now. Additional side effects (now better) were difficulty focusing at work, cramps (could just be the UC), periods of nausea, alternating between being hot and being cold, headache, weakness, and muscle aches.
Again these only lasted a few days and I am doing much better. I am finally hungry and feel comfortable actually eating. Doctor has me on this drug for 2 weeks one a day and then for a week every other day. After that I am off of it. I think I will continue the vitamins. Before this flare up I had started Vitamin D and I think it was helping my stomach.
Not for UC
One gastro specialist gave this, but no effects on UC. Two other gastro specialist we saw stated Budesonide is for Crohns because it is targeted in the lower SMALL intestine and never reaches the colon.
Out of the Frying-Pan into the Fire
Okay, the main reason for that review title is because I've been wanting to use that line from The Hobbit, BUT it also has some relevance to what I have to say about uceris.
It took a few days of being on uceris for me to notice a difference in my UC symptoms (a really good difference, I might add). I think it’s safe to say that unless people have suffered from this disease, or diseases similar to it, they wouldn’t understand how awesome a bloodless, mucusless, solid poop actually is. It’s pretty dang awesome.
Throughout the first month of being on uceris, I was feeling so great, I almost forgot I even had this gut-wrenching disease. Then I started to notice some side effects. I had the appetite of a 17-year-old boy on a high school football team (I’m pretty sure my stomach turned into a temporary bottomless pit); my joints became swollen and sore, which became much worse when I exercised; I gained ten freaking pounds in, like, one week! What the cuss?! Aaaaand, I had heard that, unlike prednisone, uceris wouldn’t cause moon face. But it did for me, and it was much worse than prednisone. My face has been ginormous for more than two months. I’ve had six people ask me if I had my wisdom teeth taken out (I mean, I have . . . about four years ago), my grandma didn’t recognize me when I saw her at Thanksgiving, and the first thing my brother said to me when he came to visit was, “’Sup, Cheeks?” My darling brother also pointed out at Christmas that I was getting hairy, which probably wouldn’t be so bad, if I were a guy. So, I shaved my face for the very first time ever. Woohoo! Check that off my chuck-it list (it’s such a dumb accomplishment that you should just “chuck it.” Haa. Get it?). I felt slightly proud for not even nicking myself with the razor, but then I realized that my round, valley-less face most likely provided some aid to that.
Anyway, I have been off of uceris for a little less than a month now. My ridiculously large appetite and the swelling and pain in my joints have subsided, and, although my face is still puffy, I can no longer see my cheeks in my peripheral vision, which I think is a big plus. My Abdominal Snowman (I really wish I could take credit for the creation of that term, but I can’t. My dad heard it somewhere, and we thought it was funny) has been put to rest and hasn’t awakened since uceris came in a took care of business.
I’m not quite sure how to rate uceris. On the one hand, it totally made me feel like a human being again. It feels great. On the other hand, I became a hairy, heavy, huge-faced, hungry hippo. But, alliterations aside, my side effects are beginning to go away—I am just hoping like crazy that my UC symptoms don’t come back.
It works, and there are coupons!
Uceris works to put colitis symptoms in remission, but I have experienced weight gain and extreme swelling of lower extremities. Using Uceris also results in some irritability and overwhelming carb cravings that ebb and flow.
As far as its cost, the manufacturer has a $25co-pay program that your pharmacy ought to be utilizing for you. The coupon is applicable to insured and uninsured alike. There is no reason to go without this medicine because of cost. https://www.uceris.com/tablet/savings
cannot afford my uceris meds
I would like to give uceris 5 stars, but i cannot afford the pills. I am suffering b/c of it. Do I put food on the table or pay for pills?
I have been on Uceris for a little over 2 months now and it has done wonder do my UC. But not the same for the rest of my body. BMs went from about 9-10 a day to under 4, so woohooo! Abdominal pains subsided about four days after starting Uceris (I'm in apriso too).
The one downside of my use of Uceris is the weight gain I've experienced. The first week on it I gained 4 pounds. Since my initial dose in mid September I am up almost 15 pounds while my dieting and exercise have stayed the same. I actually increased the number of days I work out from a normal 3 to 5 because I was unhappy with my weight gain. I have noticed an increased bloating in my lower extremities and my feet and ankles swell insanely during my runs.
Uceris has done wonders for my UC symptoms, any suggestions from anyone about other medications similar to Uceris, without these unfortunate side effects?
Uceris (yay or nay)
So I have been on Humira for the past 2-3 yrs. My first flare on it was after about a year, so my dr's changed my injections from every other week to every week. That was working fairly well for about another year and a half, but then I started flaring again. I was sent for CT scans and blood work and when my scan came back "abnormal" and I was told everything was fine, I decided to look for a new GI for a second opinion. He sent me for blood work and a barium enema. Have you ever had one of those????! Worst test in the world by far. Anyway, on top of that I was started on Uceris as well. All blood work and the enema came back normal so it was just a waiting game I suppose.
After my first month with Uceris I started noticing things were getting better. Finally! So, so far yay for Uceris.
Now here we are and it's November. Just 9 months after my flare in February. I am flaring worse than I have in a long time. I RAN OUT of my Humira back in September and waiting for insurance to cover it was the biggest headache. Anyway, about a month ago, I started flaring and then to be without my medication, life has been complete hell. My Dr. , finally decided to call me in Uceris again and this time, I've been on it for about a week and a half, and re-started my Humira (literally with 4 injections at once) just yesterday. I have no change in symptoms as of yet. I'm almost positive there is no way to know if it's the steroid that isn't working right now or if it's not working because I have't had my medicine in conjunction.
But life is pretty sh*tty (no pun intended) haha.
I have had UC for 16 years. I have taken Asacol, Rowasa, Lialda, Colaszol, prednisone, Uceris, and Azathioprine. Asacol, and Lialda no longer work. Azathioprin caused uncontrolled shaking and high blood preasure. For 9 years I was symptom free. The last 6 years have been a roller coaster. Prednisone works for me, no side effects, and no weight gain. I had a flair in June 2015 and am trying to get in remission again. I took Uceris for one week and woke up with most awful feeling in my head, symptoms of heart problems, weak legs, light headed and just felt awful. I stopped taking Uceris. I am still dealing with the side effects of Uceris. As long as I am on prednisone I do quite well. I am on my way down from prednisone, but not sure what will happen when I am done with the prednisone. I might try Entyvio, but not sure I can afford it.
Took Uceris for 30 days. Although it doesn't work as quickly as prednisone, it works without the side effects of steroids. Still did experience hunger, but no rash or headache or moon-face.
Update: 1 month on Lialda/Uceris Combo
It's been a full month on the Lialda (4 tabs/day) with Uceris (1 tab). It took several weeks but the UC severe symptoms gradually are subsiding. I have to say, that I have also given in to the fact that there are some foods I just cannot eat! (i.e. anything with vinegar! Is this from all the oil and vinegar dressing? Pickles? Sauerkraut? Coleslaw? I ate a lot of these types of foods while "dieting" because the acidic foods are recommended to burn fat. I even drank apple cider vinegar each morning for 6 months about 2 years ago. Hmmm, did any of this effect the onset of UC last fall? I wonder.)
Back to the drug combo...I actually feel pretty good with just morning pit stops. I think the Uceris has played a definite role in my UC starting to go into remission but I can tell I'm gaining a lot of weight and need to talk to my doctor about it.
By the way, taking 2000 mg D3 vitamin supplement is helping tremendously with energy level and muscle/bones feeling good these days.
I also now take 20 mg omeprazole and 1 GM sucralfate each day.
9 pills a day is a pretty good cocktail but if I keep going in the right direction minimizing the awful UC symptoms, I'm willing to keep it up! I also realize now that a lot of it (for me) has to do with staying consistent with your regiment of proper diet and Rx. Hang in there folks and God Bless!
Worked for me!
Uceris did what Lialda alone could not do. The good thing about Usceris is that 90% goes into the gut. I was told if I hadn\'t shaped up, I would be admitted to the hospital. Uceris was working within a week. Took it for two months. Very sick the whole time and for months, but all gut damage, not a flare up. Thank goodness Uceris did work for me. Horrible disease!
Lialda / Uceris Combo
Diagnosed with UC in March 2015 at 57. This is the worse disease and horribly dibilitating to my life style. I'm afraid to go to far from home and can't play golf any more for fear of being in the wrong place at the wrong time. Initially, I was placed on 3200mg of Asacol daily but did not get remission so increased to 4800mg daily. This dosage seemed to help a lot but it took about 5-6 weeks. As I slowly tried to reduce back to 3200mg, the flare-ups slowing came back again. As of September 2015, my dr has switched me over to Lialda firstname.lastname@example.org daily along with Uceris 1@9mg daily. By June I was becoming very tired with leg muscles hurting. Discovered that extreme fatigue was due to exceptionally low (14) Vitamin D count which is common especially in woman. Added 1000mg Vitamin D Supplement which is helping a lot!
Too soon to know if the Lialda and Uceris are going to do the trick. Side effects after 1 week are red bumps (like acne but not) on neck and sides of face, bloating, mild abdominal pain and gained 5 pounds in one week! This can't continue for sure but willing to give it another couple of weeks bc while stools are loose, it's down to 2-3 times a day versus 5-6 times a day.
I'm glad I found this board to read what others are experiencing with the disease and different treatments. God bless you all and good luck!
I took uceris for 50 days (because that is all the free samples I could get) it worked great. All UC symptoms were gone. 5 days later after my last Uceris tablet my RA returned in my hands and a trace of blood with bowel movement. Prednisone was horrible for me, did not gain weight or get the moon face but suffered weakness in muscles, could hardly climb stairs and was slow to improve my UC. I have just started 9MG of Budesonide which was compounded for me, as it only comes in 3mg per tablet. Uceris is budesonide so hope this works as well. I am also on Lialda 4 tablets a day. I was diagnosed with UC in 2001 and had no flares until Jan 2015. Was on Lialda 2 tabs a day for years but was remiss in taking it in 2014, thinking that is what caused the flare.
I liked this medicine because it really helped UC get back on track but affected my emotions and even more when I was coming off the medication along with bruising and feeling week after the third month
did not work for me and started me bleeding...as I researched further bleeding is a side effect !!!!!
Didn't work for me
Tried Uceris for 3 times and did not help reduce my UC. Switched back to Prednisone and starting Entyvio
Meds: Uceris humira, Asacol
I recently got put on Uceris and it worked for the first few days. My doctor only wanted me on it for a couple of weeks..... First week went great so she said to go for one more week.... I regretted it. It made my joints swell up, I developed these random red spots all over my legs, and red bumps on my joints that hurt like heck. I haven't taken it in 2 weeks now and my joints are still suffering, I still can't eat and I still can't even keep water in my system. I'm 23 years old and got diagnosed with UC when I was 21. I have been on prednisone, lialda, humira, you name it, I've been on it and nothing works.
Well day 6 of the Uceris and it looks like I am flaring. No cramping or urgency but lot of blood. So, I guess it's not working or maybe even making me worse. Of course it's the weekend and I can't contact my doctor. So, if it gets worse, I'll go to ER. What's so weird is that I don't feel bad. I had gas pains yesterday but I was able to cook, eat, walk, shop, etc. then this a.m....WHAM it hits. That's what I hate the most about this disease is that you never know when it's going to hit. Remaing faithful though that this will soon pass. I've got airline tickets for a vacation next month! I am determined to make it!
I had previously blamed Uceris for my symptoms (diarrhea, nausea, etc.). I finally had enough and went to my GI Urgent Care facility. I found out that I had a virus along with c-diff. That's why I was having the terrible symptoms and felt so bad. I've since then completed a 14-day Flagyl (now that's another story!! Ugghh!) dosage and I feel better. When I finished the Flagyl, I began taking the Uceris again (no way I could take it with the Flagyl....I could barely eat while taking the Flagyl) and I'll repost in a couple of weeks to let you know the progress. I've been on it for 3 days now and I feel ok, but not back to pre-UC days. I may still have the effects of Flagyl in my system too, so that may be some of the reason I'm not feeling up to par yet.
Day 7 of the uceris and my symptoms are worse. Very loose watery stools and I think there may be a little bleeding ( I saw pink but I did eat 2 bright red Popsicles yesterday). I also don't have much of an appetite. I am going to call my GI's office Urgent Care later today to see what they recommend. I did read that diarrhea was a side effect so maybe it's the med and not the UC. So far no bad cramping, just a gentle urge. I have also developed bad gas since taking the Uceris. I'm so desperate I will consider prednisone again as it was the only thing that put me in remission. No sleep, shaking, and puffy jaws beat the runs!
I have been taking Uceris for only 4 or 5 days. At first I thought it was working great as I started having formed stools again and only 1 or 2 a day. I actually thought it had constipated me one day as I didn't even go once! Oh happy day!! However, today, loose stools returned along with a little cramping. I will continue to take the Uceris though as I feel I haven't given it enough time to see the full effects. I know it's not as fast as prednisone so I will give it a few weeks. The good thing about it is I haven't experienced any of the hunger attacks, sleeplessness, jitters, or sweats that I did with prednisone . I will post back after I've taken it longer.
Uceris gaining weight
I have been using Uceris for about a month now and it is the only medication working for me. I have colleagon colitis for over 10 years and I take codeine sulf 30mg 2x daily, and Dicypclomine 20mg 4x daily. The problem for me is that now I am gaining weight fast on Uceris. I am ready to stop this medicine and just deal with my colitic. At wits end and frustated.
Well we didn't know if it was working for my daughter. She reached remission with 6mp, Lialda and Uceris. But she is now having a little trouble getting off the Uceris and so now it looks like it was playing a bigger role in getting her to remission then we thought. Still hoping she can stay off it and save it for desperate times. I gave it the full 5 star because it looks like it does work and because she really didn't experience any side effects and was on it for a year.
Helped in the Mix
My husband has always had trouble staying in remission with his colitis because he was a smoker. Every time he tried to quit, four months later he would come out of remission, without fail. Eleven months ago he switched to e-cigs and started taking Super Bio-Enteric Curcumin w Bioperine-Bromelain, on top of his usual Apriso, and a very specific probiotic (Saccharomyces Boulardii + MOS) recommended by a specialist. He made it 11 months this time but then came out of remission. Instead of prednisone, he went on Uceris and switched back to Lialda, which he was on years ago. After only one month, he is now back in remission, and we suspect the Uceris to be the reason, although the switch to Lialda might have helped. He has had no side effects from the Uceris and prefers it to prednisone, but the cost is outrageous. Being a VA retiree, he cannot use any of the discount cards. The 60-day supply prescription would have had a co-pay of $848, but when we dropped it to a 30-day supply, the co-pay fell to $124. Go figure. I share all this because maybe something in his story will be useful info to someone else. Good luck to all.
It was great while it lasted!
I was given Uceris when I made a necessary GI change in early 2013. It was an alternative to Prednisone which I was thrilled to know existed. At the time it wasn't fully on the market so my doctor gave me samples. I was on the brink of it being released so the following month I was able to get a normal prescription. If it hadn't been for a manufacture coupon that my pharmacy had I wouldn't have been able to afford it. This medication is very expensive. With insurance and the coupon I only had to pay $25 per month.
The medication worked great for me. I took it alongside Lialda. No side effects at all. I discovered though that in December the medication started to fail. I started to get a few flares but somehow they didn't get beyond the initial phases. Yesterday, 4/30/15, I started passing a startling amount of blood and my GI doctor is going to start me on Humira so that tells me this medicine was not a long term answer for myself.
While I was on it I absolutely loved it and couldn't have asked for a better alternative to prednisone so definitely if you can afford it and are offered the medicine try it. Ask your pharmacy if they have a coupon, visit the website for uceris, there may be a discount card you can get.
uceris works for my husband very well. but it cost $600. so we cant afford to take it. he needs chi uceris to help him . dont know what to do.
First Day on Uceris
Today is day 1 on Uceris and I am hoping for the best. I've been on Asacol, prednisonse, Rowasa, Canasa, Apriso to name a few and am on my 3rd doctor. The first two didn't seem to care, the last one was ready to put me on REmicade and that scared me which is why I'm on dr #3 whom I love. He prescribed the Uceris foam which is not ready for distribution so he put me on the oral version. I am hoping it works because i get bad cramping, nausea and bloating and see the water turn red when i go to the bathroom which is at least 8-9 times a day (at last count). I'm scared to eat because Im feeling that's why Im cramping and I am dealing with anxiety because of this and had to be put on cymbalta and xanax. I'll keep ya'll posted.. This chronic illness sucks!! I have a 4 and 6yr old and work full time and I can't enjhoy life because of this illness..
signed, hopefull but fed up.
UCERIS worked for me
After probiotics stopped working, I tried many medications with either horrible side effects or no results. It took the full 8 weeks for me to see results from UCERIS, but I've been on it for a year and have been in remission the whole time. I'm now taking it every other day and have no side effects.
Long Term of Uceris
I have been on Uceris for about 2 years. It does work great, but now I am having problems with my blood tests. I have WBC counts that go up and down. It gives me headaches, shakes/tremors and fast heart beat to name a few. I am going to see if i can get off this drug and see if my Blood tests go back to normal.
I have had UC for 8 years now and have had many flares. I have always turned to prednisone every time which worked but i was sick of the nasty side effects. Then this year in a flare my doctor introduced uceris. When he told me it would give me the same end result without the same side effects as prednisone i jumped on the idea. i tried it and my doctor was not lying. It has kept me symptom free for about 6 months now and i love it!
I started Uceris 5 days ago, to date, I still have yet to see the positive results. I'm continuing to flare without relief from Uceris. I'm keeping my hopes high with this drug as a better option to prednisone, which has been the only drug so far to stop my flares...I wonder if you can take prednisone with Uceris to supplement or jump start the healing? Anyone knows?
Miracle drug form
Diagnosed in 2010 with UC. I was off and on prednizone coupled with Asacol for a 2-3 years. Everytime I went off the prednizone I would flare. My GI doc put me on Uceris and it has be like a miracle drug for me. I have been off and on with it for the last 2 years (mostly on) and it has been working great. I heard Uceris is coming out with a 6mg version for maintenance which I can't wait to go on because the Asacol doesn't seem to maintain me at all.
I just wrapped up an 8 week course of Uceris.
I had been going to the bathroom 18 - 20+ times a day. Liquid stool with blood in every one. I was also nauseated continuously and so crampy that I wasn't walking completely upright. I was taking Lialda and using a Rowasa enema. I picked up Azathioprine and Uceris from the pharmacy on a Thursday afternoon and took both products that day. I took my second dose of Uceris on Friday morning. When my husband came home from work I went out to greet him the first thing he said is "You're walking upright!". I still can't believe how quickly I improved. I completed my 8 week course of Uceris 4 days ago. I continue to take Lialda, Rowasa and Azathioprine. I am still working my way up to the full dose of Azathioprine. So far so good.
Didn't work for me
I just finished a week of Uceris. It did nothing for me except upset my stomach, raise my blood sugar and give me headaches. My GI wanted me to stay on it for another week. ...uh.....no. I really had high hopes for this drug, because my next step, which I have resisted for 9 months (using SCD and Asacol to try and obtain remission), is Remicade. Getting the preliminary lab work tomorrow, and will start next week, I guess. I am scared to death of Remicade and just feel really defeated. Sorry this review had some whining with it. ;)
Doubled Edged Sword
Still on this drug that stopped blood, diarehea, and cramps.
Trying to take it every other day now but I have a strong feeling I'm going back to square one, once I stop taking this drug
Well after all it was advertised as a temporary solution for remission. It has done its job. Problem is its very expensive.
I'm on Medicare and it's approx $750.00 co pay for a 30 day supply.
I have had UC for about 8 years now, diagnosed when I was 16. I tried asocol, flagyl, and colazol. The latter worked okay, but my UC seemed to really flare up after I started graduate school. My doctor put me on Lialda, which worked a littler better but I still had days where I didn't want to leave my house. I have been taking Uceris, 1 9mg pill a day, off and on for a year now. It works great for me. I consider it a miracle drug. It kicks in about 3-7 days after I start taking it. I wish this drug had been available when I was in college. I went through some terrible days, as I'm sure you all have. Now I depend on Uceris when I have a flare up. My only two complaints are the cost and I do have vaginal bleeding between periods. It's a little annoying, but so worth it!!
Is this stuff working?
I started taking Uceris 3 weeks ago to control a flair which happened due to decreasing my Azathioprine. Bad move! Somedays are better than others so I can't really tell if it's working. I did use Prednisone for a flaire and it worked really well. After that I went into remission. I am thinking to give this another week or two and see if I improve. Not sure it's worth hanging around for it to work.
so far so good
After not being able to taper off Prednisone for 13 months, and after examining the extent of damage in my colon, my doctor recommended trying Uceris. So, I tapered off the Prednisone while taking Uceris over a period of about 6 weeks. I have now been off Prednisone for 3 weeks and things are going just fine with one exception. I'm sure this side effect does not affect most folks out there but, I'm a post menopausal woman and have started vaginal bleeding with the Uceris. I'm sure it has to do with the progesterone level in my body. Anyone, just another thing to figure out. But, so glad to be in remission. I'd love to hear from any women who have had a similar experience.
Uceris didn't work...
Uceris didn't do a thing for me. My issue is I'm pregnant and was already flaring when I got pregnant which is a big no no, however after years of trying and years of being in remission just when I started to flare I got preg. I was on lialda , canasa, then rowasa, procort, cortenema, now I'm on 12 balsalazide and uceris. UCERIS didn't do jack. After all this now I'm in prednisone three times a day and noticed a huge difference just from the first day. In fact a few people I know who have also tried uceris said it did not work.
Uceris didn't work
The first 5 days on Uceris were ok, but the next 7 were horrible. I suffered from bloat, worse runs, almost constant nausea, headaches and it interfered with my sleep. 3 days before I stopped taking it, I got real bad pain in my sigmoid, and when I went to the bathroom there was a lot of blood. That was the last straw. Uceris might be good for others, but definitely not for me.
Uceris STILL QUESTIONS
Ok, I am on my secondcroundcof taking this drug that kept me in
Remission the first time, about 4 months before I tapered off and then symptoms started again.
This is my second go around, not as good as first, but hanging in there with some ocassional tough moments.
This time I started back up in June I think to present.
Has anyone attempted to take 2 9mg time released pills a day on their own?
Doc said I could try it before I have to perhaps go to PLAN B PREDNISONE. I'm going on a month trip, never took Pred, and ccertainly don't want to try another new
drug while away a month.
just wondering if anyone tried that?
I have had a flare up for about 2 months now after remission for 3 years! My dr gave me uceris and I have been taking it for 4 days and I have no improvement in symptoms. I was so excited about the reduced amount of side effects from prednisone but I don't see a point to this med.
I have left side UC. I was excited to read how well it should have worked. However, not the case for me. I found after 14 days still ZERO symptom relief. As though I was taking nothing to control my symptoms. In fact I was getting worse. I am now on prednisone. My gastro suggested perhaps my erosion was too low for the drug to give full effect. . Glad I at least attempted.
Works pretty good
After my flare-up, my maintenance drug wasn't working. Doctor gave me a week sample that took away all blood and diarrhea. Then kept me on it for 3 months. Better than the usual symptoms, but still have more gas than usual in my lower colon, and 3 movements a day, 2 mostly prompted by gas buildup. It's a little uncomfortable. But I won't know for another month if it will bring me back into remission--I'm not sure if the gas is normal, but I did see it as one of the side effects. I'm a little concerned.
Helped Control a Flare Up
After visiting the ER due to a rough flare up I was prescribed Uceris. A few days of use and my UC symptoms were getting less severe. By day 5 things felt under control. I do have what feels like a caffeine rush after using it, but it is minor and lasts a short period. For me it's easier than the prednisone side effects!
(Note: I also take Lialda daily so my results could be due to the combination)
Not as fast acting
THis is the first time I have used Uceris. Initially, I could feel it at work. After one month of use my symptons haven't been controlled like prednisone. The positive side, Uceris doesn't have the horrible side effects of prednisone. Canasa seems to work best for me. In addition I am on a wheat/gluten free diet and, a diet high in probotics. This seems to reduce the flare ups.
Didn't work for me
My doctor put my on Uceris after my 2nd flare up May 2014. I was hopefull since this is a drug that is supposed to target the colon. For me it did nothing. I might as well have been taking sugar pills. After a month the doctor took me off the Uceris and put be on prednisone. It doesn't seem the pred is doing much either. I hope Uceris works for someone.
So after my Ucerus post-and it not working for me...
I hope Ucerus is a viable option for some of us even though it didn't work for my case.
Tomorrow I'm going in for a flex sig and other tests because my GI wants to try out the new Entyvio on me.
I'm a tad freaked out as this will be my third biologic after antibodying to Remicade and minimal results with Humira.
Oy, I feel like a guinea pig but I'll do it for the sake of experience and report on it when I can.
Has anyone here tried it yet?
I am about a year out from my 2 month dose of Uceris and I still feel amazing! There seems to finally be an end to my 6 years of drugs that didn't work. I still take Apriso daily, but I can finally live life and I hope this continues because I don't ever want to go back!
I was told it was basically a half dose of prednisone. I took it for a week during a flare up and it did nothing for me.
It put me back in remission when many other drugs failed me!
9 mg time released tablet once a day.
I can now go on vacation with more confidence than worry!
Hoping my remission lasts awhile.
I've been on Uceris for a little over 2 weeks. I feel great. The pain is significantly reduced! Not totally symptom free, but so much better!
Sadly not a miracle drug for me
I started on Uceris almost a year ago as a maintenance drug. I had good results for the first month when I was near remission, and it doesn't have any of the adverse Prednisone side effects. Sadly it became less effective over time and I ended up having to go back on prednisone in March to stop a lingering flare. It seems that Uceris is a good drug to maintain remission, but not so effective in stopping a flare. My GI doctor told me to nix it two weeks ago as her and some of her colleagues were not convinced of the efficacy long-term.
I started taking Uceris 8 months ago because I started having kidney problems due to prednisone. Within a month of starting it I was able to start fully tapering down on my prednisone and my kidney function has significantly improved. My UC has stayed in remission and thankfully I havent had any of the nasty side effects of steroids. We've discussed coming off of it as well but due to the fact that I am currently pregnant and doing so well on it, my GI, husband, and I decided it was safer to stay on it. It has definitely been a lifesaver in the interim before my surgery.
2 weeks on Uceris worked for me
My Doc gave me 2 weeks of Uceris samples, and they worked magic on me - I was symptom-free after just a few days, and it literally brought me back to life!
I got my insurance co. to fill a 30-day prescription, but by then I didn't need it anymore - but I carry it with me when I travel just in case I flare again.
SCD, Probiotics & supplements are still keepin' me goin' strong and symptom-free!
I'm on my 2nd round of Uceris. I first took it during a mild-ish flare and it immediately stopped my symptoms and got me into remission. After my most recent colonoscopy (about 2 months after stopping the Uceris), my doctor still saw signs of active disease and wanted me back on it for 60 days. I'm about 30 days in with the same results as before. I feel good and have zero of the usual side effects that come with Prednisone.
one week on Uceris
I have been on Uceris for one week. The doctor put me on it for 8 weeks due to a severe flare up. So far, there is a significant decrease in symptoms and I am hoping that it will continue improving. The only side effect I have been experiencing is stomach aches / cramps a few times a day. I'll take the cramps any day over a flare up!
Love love love it
I love love love it but it took me 8 weeks to get there.
I was recently in a b a d flare up when my Dr suggested Uceris. I fought it for several months. I had been on prednisone for over 2 years and DID NOT want to go back on a steroid. Defeated after months of trying to control the flare I finally gave in. But, not before I called a Dr of Pharmacology friend, she told me it was either Uceris or Remicade. I had to give Uceris a shot. It took 8 weeks for me to notice a difference and get over the initial side effects, nothing major just a few headaches. So very happy I finally gave in and started taking Uceris.
The first time I used Uceris it worked like a dream. I started to see an improvement as quickly as I did with prednisone but wasn't nearly as fatigued as I was when taking prednisone. I also wasn't as moody as I was when on prednisone. A few months later, I was flaring again so I started a round of Uceris. I didn't see any improvement the second time around (but I didn't get worse either). Since there was no improvement, my doc and I ended up switching my maintenance meds before starting me on prednisone. That seemed to do the trick.
Uceris - Much better than Prednisone
I had a terrible flare-up....I ended up in ICU on Christmas Day. Of course, I was prescribed Prednisone. I complained to my GI about the nasty side effects and he immediately switched me OFF Prednisone and ON Uceris, with no "tapering off" of the Prednisone. He explained that only about 10% of the drug goes into the bloodstream so the drug mainly stays in the intestinal tract. I experienced absolutely NO side effects with the Uceris and there was no tapering off with the Uceris either. Now I take a monthly injection of Simponi. I love it. My colonoscopy last week showed 2/3 of the large intestine 100% healthy and the other 1/3 scarred but in complete remission/healed. Apparently, Simponi actually reverses the damage from UC but that's a different blog.... :)
Uceris seemed to work
I was given a two week trial by my Doctor to try and replace the prednizone I had been on. Within a few days my flare had slowed quite a bit. The doctor wrote me a script for Uceris but unfortunately my insurance wouldn't pay for it and I couldn't afford the $1300.00 a month for it. So he is now trying Budesonide which has similar ingredients but targets the upper colon and my UC is mainly in my lower colon so he is unsure if it will help me. He don't understand why my insurance will cover more expensive UC drugs but not Uceris and neither am I. I only hope the Budesonide works as well so I don't have to go back on stronger drugs with more side effects such as prednizone.
Uceris and Me
This worked great for me. I was on a 8 week course. We had one problem that I was experiencing an allergic reaction to Apriso and didn't realize it. So.. I was put on both medications. I was taking Uceris and Apriso for about three weeks. I had urgency, frequency and basically shooting diarrhea everywhere and I was running to the bathroom day and night. I had a family member pass away and needed to go to the Funeral.On fluids. I did not eat and drank liquids and before leaving the house that morning and took the Uceris. I forgot to take Apriso. That afternoon I started feeling a little better. By the next day I was a lot better. I was away from home and had left the bottle of Apriso (by accident) on the shelf. Three days and extreme stress later and I didn't think to much of it until I got home a few days later and took the Apriso. My symptoms started with severity once again. My boyfriend asked me if it was the Apriso causing a side effect. I called the doctor and we all agreed I was having an allergic reaction. I stopped taking it and did start to feel better. I was kept on course with the Uceris by my physician for the next four weeks. I am in remission ever since. It has been one full year and I feel like a normal person. I was on Uceris for a month.
UCERIS allowed me to get off prednisone with much fewer typical steroid side effects. It helped reduce my flare and very little withdrawal symptoms when I got off of it a few months ago, as I continue my Remicade treatments. Thankful I have insurance when reading other people's stories.
Was given a prescription for Uceris in February 2014 to try and get me off of Prednisone . Had it filled and when I went to pick it up insurance did not pay a dime and it was over $1600.00 for 30 tablets. Needless to say I did not get the medicine and will wait to see if the price goes down.
I was in a flare for a long time and pared with Rowasa, Uceris doused the flame within 3 days! Although, I think I experienced minor steroid withdraw within 4 weeks. I prefer 9mg once daily rather than 10mg pills 4x daily.
I stress for UC you have to treat from both ends. Don't let retention enemas scare you! They get easier as they go and so much better than surgery.
Uceris for me more like useless
I did 10 weeks for a flare and had to stop and go back on prednisone. :( We had hoped for the best but symptoms got worse and it didn't work for me unfortunately
Hoping others have better results
Uceris, the final nail in the coffin to a post-baby flare
Uceris was the drug that worked for me this time round. I was 4 months in to a post-pregnancy Crohn's flare up that was reluctant to go away. A colonoscopy showed that the prednisone and Asacol cleared up most of the flare, but in the lower colon north of the rectum. I went on Uceris in September, but since my insurance wouldn't cover it, my doctor would give me samples as they came in. My symptoms started to ease about 1.5 weeks into treatment. Note that I had also upped my SCD yogurt intake to 2 cups per day (although I was only going gluten free not the whole SCD). Although there were multiple gaps in the free drug availability and my symptoms would come back after a few days off. Finally in January my insurance coverage changed and Uceris was covered. My Dr. prescribed it for 6 weeks and I've been in remission since. Uceris had no side effects for me, and I think it worked well because of my flare's location was exactly where the drug targeted.
Uceris worked for me!
I honestly don't remember when I diagnosed with UC as initially it was diagnosed as IBS (late 90's). I had a horrible flare in 2012 and was in the hospital for 5 days. It took lots of Prednisone and time to fully recover. Last June I had another flare, although not as bad as 2012, and my GI told me about this new drug called Uceris. It sounded like a miracle drug and I was willing to try just about anything. I started it on 06/24/13 at 9 mg per day, ending on 07/26/13. It worked wonderfully with none of the nasty side effects. I take Liada daily, but I have been flare free!
I tried Uceris starting in August 2013. I had been on a progressively worsening flare since April of 2012 and it was not responding to prednisone, canasa, or Asocol HD. My doctor proscribed Uceris with the Asocol and kindly gave me some coupons (the meds totaled over $2,000 a month and the insurance wasn't gonna pick all of that up). For the first month things got better, bleeding was greatly reduced and frequency was down. I thought I was finally going to get to remission. I renewed the prescriptions and it was on the second course that things took a turn for the worse. My hair starting falling out in clumps but I also started growing a beard. I had terrible edema swelling in my arms, legs, and face that was extremely painful. To add to all of that my symptoms came back worse than when I started on the meds. By Thanksgiving I was in severe flare and so sick I could barely function. I stopped all meds and my doctor gave me a referral to an IBD specialist. They did another colonoscopy and found that the disease has spread to engage more than half of my entire colon when it was initially isolated to the rectal area. All while on meds. After I got off all meds and had been desperately ill for three months the disease swung back to mild. They now have me on Lialda and symptoms are moving back to moderate. So to sum up - not only did the meds Uceris included, not help but I seem to be worse off while on them.
I began taking UCERIS after spending two nights in the hospital recieving iv steroids. It helped a little for like a week. And then did not help at all. And I ended up back on prednisone. The one thing i did like however was Uceris has way less side effects compared to prednisone.
True no side effects other than the sticker shock when we paid over $1100 for first month! Few months later price went way down but not sure why. Be sure to check out Uceris discount card! Although no bad side effects like the prednisone, it did
not stop flare up from occurring so had to go back on dreaded prednisone. After several months of weaning, now off prednisone thanks to LOW DOSE NALTREXONE (LDN). I urge all of you to google this cheap FDA medicine that your
Dr never heard of. Your Dr may roll his/her eyeballs at you but give LDN a try! Other than some minor issue with vivid dreams
at first, there are no negative side effects and no frightening stats about cancer risk. Costs about $35 per month. Start with
liquid so you can tweak. You have to get med from compounding pharmacy. Adam, please contact me if you would like me to submit LDN review. Have you done LDN survey? I have
done a lot of research on this and recommend great website
LDN Research Trust.org. Spread the word on LDN! Best, Larry
Anyone is welcome to email me about LDN.
Response: Hi Larry, several stories on LDN you should read here from the site: http://www.ihaveuc.com/category/ulcerative-colitis-drugs/low-dose-naltrexone-ulcerative-colitis-drugs/
that link will take you to them. thx, Adam
Diagnosed with UC 4 years ago. Still in the middle of my first flare-up (having not had a flare-down). Have gone through a number of meds. Currently on Mesalamine capsules, Hydrocortisone enemas (both for several years), and Uceris (for about 7 months).
Previous prescription meds include Colazal (trade name), Mesalamine (time-release capsules and suppositories) Prednisone, Remicade, Imuran (could not keep down, discontinued), and Humira. I have also taken a number of supplements, and am still taking some. I tried homeopathic meds from a quack in India (for about a year) and acupuncture (4 sessions). Neither provided any help. I've also tried the SCD diet (with negligible success). Just finished my 2nd liter of Extra Virgin Olive Oil. I have another liter on hand and will discontinue when finished if no improvement. I've also tried self-administered Colloidal Silver and am about to start a Hydrogen Peroxide program (looks promising – we'll see).
A waste of money
It was expensive and did absolutely nothing for me at all. I have been in a flare since the beginning of September and I have tried Uceris and Endocourt and neither helped and the Endocourt made the bleeding worse. My doctor also had me try 6MP and I thought I was going to die. i got extremely ill and had a sore throat for a month. It took me six weeks to get back to some sort of normal. I just started using Humira yesterday. I know it is only 24 hours but I have made a LOT less trips and don't feel awful at all. Hoping this is the one that might stop this horrible, never ending flare. I actually feel more like the old me in 24 hours of this than in anything else he has given me except Prednisone. It works for me too, but of course my doctor doesn't like it so, too bad. I wish everyone else luck with this or any other drug, but it did nothing at all for me. Wishing all of you good health and happiness!