DD is currently in Renflexis. She had only 1 infusion so far. She is in remission for past 1yr or so and was on Avsola but got severe skin rashes which made the lateral move to Renflexis....
Hi, For DD Symptoms quickly improved after the initial entyvio dose. But lost its benefit close to 1year. She is taking Avsola infusion currently. Best wishes.....
Hi all, Anyone here keeping remission taking Avsola? GI prescribed Avsola as DD started flaring after 1+ yrs in Entyvio. Currently she is on 20mg prednisone. She is advised to have pneumonia shot and...
Sorry to know Entyvio loosing its effect. Any flex sigmoidoscopy or colonoscopy scheduled? DD too dealing with similar situation from July and managing with on and off budisonide. She has a flex...
Hi, Welcome to the UC forum. Sorry to read your struggles. Hope prednisone and entyvio combo gives you long remission. As for your q's: Break outs: Your break outs are the side effects of prednisone....
Happy for you Andreita !! Take good care... Best wishes......
UCyousee - Thank you for sharing the link!! Feels better after reading it!! I am wondering if there is any connection between UC and JAK2 mutation ... Thank you for the best wishes.......
Thank you Ambling!! I asked about the accuracy and doctor said false negative is possible, as she is positive he is not doubting it. He said she would be his youngest patient if bone marrow shows...
Hi, Anyone here with JAK 2 mutation? DD Tested positive for JAK2 Mutation. Her WBC was always slightly / more elevated whenever checked- which leads to Hematologist and the blood work. Next is bone...
Andreita, Happy that you found a good specialist! Wishing you a successful surgery! Please keep us posted.. Best wishes.....
Thank you for posting IBD Gal!! I am interested to learn more from the replies. My daughter is currently experiencing the rectal inflammation and urgency though her stools are formed. Best wishes.....
https://www.sciencealert.com/researchers-trick-a-faulty-immune-system-into-repairing-the-gut-of-mice...
DD is taking Entyvio for 8months. Too early to say but so far no side effects other than some sinus headaches here and there. She did have a similar to gout kind of attack which we thought could be...
Hi, Sorry to say Hi here! Welcome to UC forum! For most- UC has 2 faces -an Active /flare up face and a Sleeping/Remission Face. To answer your question: For my DD- I would say during flare up- it is...
DD did not have any vaccine Prior to starting Entyvio. Before each infusion she takes Benadryl allergy and a Tylenol . So far she is doing good and gained back all lost weight and eats normally....
Hi MBwUC, I would suggest you to stick with Entyvio as GI suggested as there is improvements. Sometime it takes time to get into remission. As Jane suggested mesalamine enemas calm down rectal...
Merry Christmas and a Blessed 2021 dear all !!...
Thank you FlowersGal for sharing!! Gives a consoling feeling !! Appreciate much! @ Jane974- She had an FMT via colonoscopy this 2nd flare -but it did not result in remission. May be because the stool...
Thank you Jane974 and Ambling for sharing your thoughts!! Higher level medications always scares me hence the doubt ! @ Jane974 - Regarding SCD - She followed it strictly for close to 2yrs. In...
Thank you Straydog for sharing about Mayo Clinic's website. Will do the research there.....
Hi All, Just checking - Anyone in Entyvio experienced Gout? DD is on Entyvio from June. She is been doing so good and gained back almost all lost weight. Her iron level went up but WBC is still...
I am curious ..Thank you for sharing!!...
Hi, Entyvio worked very quickly for my DD. She started on loading dose in June and her symptoms disappeared within 1week. Prior to entyvio she tried uceris, mesalamine enema , lialda and perdnisone....
Andrina, So happy to know you are doing better! Hope you gain back your healthy weight soon... Not sure you can tolerate - Chicken soup, eggs, Avacado, Almond butter are the list came to mind while...
SCD diet helped DD greatly those days with her symptoms and she gained all her lost weight. But SCD did not gave her a strong remission even though she was on lialda. She had Fecal microbiome...
Hi, When DD was on strict SCD - I used to make SCD Turkey sausage and Butternut squash soup. Also baked salmon. Those days - DD followed All against grain and Urban poser blogs and she still follows...
Hi UC Girl, LDN - may be a good option. I have no personal experience to share but read here in this forum it helped quiet a few. Just a flash thought came to mind while reading your post. Hope you...
DD just completed the 3rd loading dose. Within 1 week of her 1st loading dose her flare symptoms disappeared. Too early to conclude but so far Entyvio is working for her. No nausea complaints but she...
Hi, For my daughter - Budesonide worked in 2 days and gained back 10lbs in 2 months but flared after 2 months while on it . Hope you have done stool check for c.diff... Best wishes.....
Old Hat- My hubby applied clove oil to his swollen bug bites and it calmed it down. The bug bites we so red and swollen and felt so warm .Before this clove oil try- he tried bendryl/ caladryl and...
Andrina- Reading your post and LDN came to mind. May be a try? Best always.....
Much Thanks FlowersGal for your reply. Gives me hope for long travel and gatherings... Best wishes......
Much Thanks Flowergirl for your sharing! Gives me comfort and hope! Happy that you don't need the prep meds. For DD they said the prep meds only needed during the loading doses. Wanted to check-...
Thank you tiredofallthispoop, Lili35 and Straydog for your thoughts and replies. Appreciate much! @tiredofallthispoop: DD's symptoms varies each day. Stool consistency wise there is improvement but...
Could yours be of any allergic reaction? I ask because of the swollen lips symptoms. Canker sores - B complex could be of help. For film on cheeks - Try brushing those parts with salt. My symptoms...
Thank you Ambling ! Appreciate your advice - Valid point !!...
Update regarding my DD: She will getting into next level medication-Entyvio tomorrow. The FMT nor the oral lialda + enema did not give a good result. From 125lb's she landed on 106lb's in this 7...
Sorry you are having oral problems along with UC. Not sure how much help this suggestion will do but sharing incase this will help. Try brushing the cheeks and gums with salt. Salt kills bacteria and...
Sorry to say Hi here! I am not experienced to give much advice. All I can say is this is a very good forum .Lots of sharing and information. Hope humira works for you... Best wishes .. ....
@ Limey- I am so happy for you that the FMT holding strong in you. I remember your posts in the past as very few in this forum gone through FMT. Ty Momto2boys - Hope you are doing good too!! So far...
All, Sharing as an update regarding DD status. DD is scheduled for an FMT tomorrow through Colonoscopy. Reason being - Her c.diff symptoms came back half way of Difficid 10 days course. I am...
Hi, From what my DD going through - I would say bacterial infection. DD does not have any cramps but have rectal urgency and mucus - at times blood from rectum as she is dealing with this from a...
@Lili35- No DD did not have any antibiotic prior to C.diff . The last time she had was in 2011 . Vancomycin . I would suggest to do stool test. The symptoms of C Diff she had in 2011 and this time is...
Hi, My DD too more or less in the same boat. She had been in remission for 8yrs . In November some outside food did not suit well and kicked her UC back to flare. Initially treated as stomach virus...
Sara- I missed what happened. I feel your posts and opinions are very reasonable and not biased.. I am glad that you are back......
Wishing you best results LoLil!! Good that you continued your mesalamine after FT’s.....
@ CGK- DD stopped taking mesalamine I think few years back Now restarting...
Well!! The 2011 fecal transplant strength did not sustain!! DD has moderate - severe UC pan colitis. Staring : Lialda 4 .8 gn daily Mesalamine enema 4 gm every night Budesonide 9 mg daily Have to do...
Thank you all for the good wishes!! @CGK & Sara- The steroid was given to manage till the colonoscopy as DD got so weak due to cough and fever added to her stomach symptoms. I literally asked the NP...
Posting as an update reg DD. DD got stomach virus in midweek of November after eating out. GI office treated as stomach virus till Christmas. As per NP and general Physician some virus symptoms...