Hi.. I am on Xeljanz .I was on 20mg a day, had to go on 5 mg twice a day due to severe bruising. My creatine level also was elevated. I have been on just about all of the biological meds.. My Dr....
Went to the Best Neuro- Ophthalmologists.. in New York City ! They all said I have Optic Neuritis.They wanted to be sure I didn’t have Multiple Scleroses. Had a Spinal Tsp.. that really hurt.. had...
Thank you so much for answering back so quickly… I guess I will bite the bullet and start it… the only other option is a colectomy.. which is totally life changing.. The only thing that scares me is...
Hi…. I am suffering very badly with my UC.. Had it for over 35 years! Been on every Biologic.. Remicade, Entyvio, Humira, Stelara.. which caused me to lose 75 of my sight in my left eye. Not much...
Hi! I have had UC for about 35 years. I have tried Remicade, Humira, Entyvio, Stelara.. which according to the top neuro ophthalmologists..caused me to lose my sight in my left eye. There are a few...
Thank you so much for responding.. i am so sorry you had such a terrible experience.. but are feeling better 😀. I was put on a 10 day course of an antibiotic called Dificid.. allergic to...
Last Tuesday night.. wound up in the E.R. I was vomiting and had severe stomach pain .. and on the toilet for hours . They did a cat scan with contrast and saw my Descending colon is very inflamed ....
Thanks so much! Wishing you lots of good luck! Feel better👍...
Hi! Is anybody on Entyvio? Just had my third infusion. The side effects are extreme nausea and this infusion.. not the other two upset my stomach... Going to the bathroom... more.. I have had my...
I am so happy you are in remission! Congratulations! People are saying and showing the hair loss on Entyvio Warriors.. on Facebook... of which I am a member. People are holding clumps of hair, and...
Hi.. I am having my second dose of Entyvio.. this week! I am terrified of the side effects people are posting.. For example.. severe joint pain, fatigue, nausea, and severe hair loss.. The side...
Hi everyone! I have unfortunately suffered with UC for 25 years. Tried Humira, developed antibodies against it, tried Remicade.. put me in the hospital for tachycardia, tried 6MP.. made me vomit!...
I had a colonoscopy two weeks ago from today . In the first six days, only passed blood clots.. about 15 times a day.. On day 7.. started with severe diarrhea.. going about 15-20 times a day. My Dr....
I had a colonoscopy two weeks ago from today. For six days later... had only blood clots in the toilet bowl.. about 15 times a day . Then turned to diarrhea... going about 15 times a day. Was tested...
Hi.... I had a colonoscopy on Wednesday... with the usual biopsies.. this time, the Dr. removed a polyp. I have been running to the bathroom ever since, about 15 times a day.. with blood and clots...
Hi ... is anybody else on Onfi.. I tried many meds .. which gave me bad side effects... It will be $8000.00 for 30 pills.. Anybody try the generic. I need a Medication that won’t make me too tired .....
Hi I have had UC for about 22 years now. Prednisone.. all different strengths depending on how bad my flare is and 4 Lialda a day ..is what helps me. Unfortunately... in January Lialda is going to be...
Hi.. I will be 70 in March .. and have had only 2 Grand Mal Seizures in my life.. I actually broke my shoulder in three places during the second seizure .. Tried a few meds that didn’t agree with...
I think any season change... brings it on😫...
Hi.... I tried Keppra.. made me extremely nuts.. and another drug .. gave me a fever and made me vomit .. Anyone out there on Onfi? My only bad side effect is a very distended stomach. He was going...
Hi.. I have had Ulcerative Colitis for about 25 years .. I am almost 70. I have been off and on Prednisone for most of the time. Highest I have ever on was 60 mg.. to a taper all the way to ten .. On...
To Not So Sickly Girl.. Thanks for responding FMT.. May be my only option. My UC is so severe thanks to the Vancomycin and Flagyl ......
To I am curious... thanks for responding.... Doctor mentioned it.. Don’t know anyone in person that has done it... Everything has side effects, but can’t do more antibiotics....
Thanks for responding. I was put on Vancomycin, took it for six days and it made my UC worse .. switched to Flagyl.. made me sicker. Went back on Vancomycin , and am bleeding and very nauseous . Dr....
Hi Thanks for responding.. Was on Vancomycin for five days .. made me so much sicker.. The Dr. put me on Flagyl.. He would like to do a fecal transplant.. I am very afraid of side effects.. My...
Hi... I have had UC for almost 19 years.... I am on Lialda, and CBD oil.. and was doing pretty well! Nine days ago, I attended a baby shower.. ate Caesar Salad.. and about two hours into the party.....
Hi.. Had a Grand Mal seizure four years ago.. Wasn't put on meds..Dr. said wasn't necessary with only one seizure. Had second one a month ago. Abmbulatory EEG.. Shows right temporal lobe epilepsy .....
I was in remission for about six months .... on Prednisone and Lialda.. Had some uncomfortable feeling.. as though a brick were in my upper stomach.. Had a colonoscopy in July.. Dr. felt it was...
Hi.. I am having the colonoscopy on Thursday.. Had one in July.. Dr. Feels it still is the best diagnostic test to see what is bothering me.. The prep is actually worse than the procedure .. I...
Hi.... I have had UC for about 18 years now.. I will be 68 in March.. I go in and out of flares... Prednisone and Lialda have brought me out of flares.. Depending on the dose .. I have been going...
Had the colonoscopy Friday..In severe pain and still bleeding more.. Dr. Saw me yesterday as an emergency.. No fever.. Wants me to start 6MP.. increased my Prednisone to 30mgs from 20....... and...
The Dr. seemed to feel without biopsy results .. I had left sided distal Mild/ moderate UC. Yes I tapered from 40 mg down to 20. Thanks for your reply......
Hi everybody .. I had a colonoscopy done on Friday due to pretty nasty blood clots.. Have had UC for about 17 years now. I am on Lialda and 20 mg of Prednisone. The Dr. Took biopsies and ever since...
Wishing you much success with the Enyvio.. Let me know how you are doing with subsequent infusions!!!!!...
Surgery will be my last resort.. Still have many options... I will try the Fodmap diet.. Not to restrictive . Then there is the SCD.. and paleo diets. There was a study being done in Boston .. Where...
Hi.. Haven't posted in a while . I have had this dreadful disease for about 17 years . I am now 67.. Started as Ulcerative Proctitis.. and has progressed higher up since .. I am on Lialda and failed...
Thanks for googling it for me.....
I have been on Lialda for 13 months now.. I didn't know that it could cause bloating......
Hi.. I had my yearly Colonoscopy.. and Gastroscopy. My Dr. said this years test.. showed my colitis was improving.. On Lialda and now on 2.5 mg of Prednisone from 40mg. (Am on Prednisone for one year...
Sorry you don't have a colon.. But happy the Cannbus oil helped you......
My original post I typed 4 instead of 3... Lialda .. I failed Remicade and Humira.. Built antibodies against.. So had to stop. the 15 mg of Pred. And 3 Lialda are letting me leave the house, but...
Thanks everyone for your replies.. I am currently on 3 Lialda/day and 15 mg of Prednisone. I tried Remicade and Humira, Cortisone enemas, and so far am functioning and am able to leave the house ....
Hi!! I am currently on 4 Lialda pills a day, and went from 40 mg of Prednisone to 15. My hair has fallen out quite a bit and I gained 20 pounds since I started Prednisone . I have been on both meds...
Went to the Dr. yesterday, as an emergency.. I was peeing blood and going every five minutes with severe pain. Dr. tested my urine in the office- results.. A urinary tract infection. Put me on an...
Since I was on Lialda and am on Prednisone.. I am symptom free. That's why I was hesitant to try Generic Colazal.. But the expense of Lialda is prohibitive . Pentasa, Asacol, are in the 600.00/ month...
Hi.. I live in the U.S. I have left sided UC. I have trouble retaining enemas...I looked into the patient assistance program.. If your household earns $47,000 or more you are not qualified for any...
Hi.. I have been on Lialda, and on Prednisone.. Seems to help with my UC symptoms.. Going 40 times a day with blood and stools. With insurance my Lialda is costing me $485.00 per month which is...
Thanks for your replies. I am doing weekly shots. I have a call in to my Dr. to try to explain what is going on!!! Obviously I can't do the shots more than weekly.. Guess I have to try something...
I have been on weekly Humira Shots, for two months now, just had a Prometheus test done.. The Dr.s assistant just called that the Dr.said that there is no trace of Humira in my blood???? Could that...
Hi! I am on Lialda.. Which is costing me $500.00/ month now since the New Year has just started and have a 3200 deductible ... It seems to be helping my flare but am also on Humira weekly and 20 mg...