So sorry to hear this, Lab. Hope you’re feeling better now. You mentioned that your GI explained that it could be caused by an allergic reaction. Though Remicade had caused me crazy rash and itching,...
This is a review of having Crohn’s for 18 years. Was diagnosed in 2007 and may have had Crohn’s 10 or even 20 years before being diagnosed. Although my Crohn’s is not that aggressive, I ended 2024...
Sending you healing hugs, Clo. Praying for you! Reading through all the posts, you had to deal with a lot of procedures and unhelpful people. Hope you get all the results soon and it ends up to just...
Is it only me who got this side effect from Rinvoq? Since last July and after almost a year, Rinvoq has caused me bleeding and bruising. Saw a hematologist and have been on EPO injections, B12...
Randy and Tom, thank you so much. I had my 2nd loading dose last week. My GI told me that he won't assess the effectiveness of the medicine and I won't see any improvements before 12 weeks....
My ferritin level was 450 last July and I was bleeding and having a lot of bruises as a side effect of Rinvoq. My GI gave me a referral to a hematologist then and although my HB levels were low, she...
Straydog and CurtisW, thank you very much. The doctor at the infusion center, btw she’s my GI’s assistant, informed me that Entivyo + Rinvoq combo is very effective and successful. Praying they would....
Had my first Entyvio infusion today. What side effects should I watch for? Doctor told me first I should have the infusion in half an hour and it extended to 1 hr 45 min. I have had an allergic...
Since Rinvoq is causing me bleeding and bruising and since EPO injections can’t make up for the loss of blood, my GI decided to switch me to the last option I have: Entivyo. Waiting for insurance...
Thank you, Susie. Yes, I read a lot of research articles and very few mentioned that Entivyo could heal fistulas either partially or completely. The rest mentioned it was ineffective with fistula...
Saw the hematologist today and she advised me that I should stop Rinvoq as it is causing me bleeding and bruising. She mentioned that I can take the lowest dose when I informed her that I have no...
Did you develop any allergic reactions while you were on Humira? I was on Remicade for almost 7 years and it was very successful. However, hadn’t it been for developing an allergic reaction to it, I...
@Clo. On a second thought, I decided to listen to my doctor. He convinced me that Entivyo is not successful with fistulas. So, I have no other option left other than staying on Rinvoq. He even...
Dear all, thank you so much. Saw my GI and he was surprised that a small dose of steroids would have caused all these problems. He prescribed an antidepressant for a short time and lowered my Rinvoq...
I posted previously that I could successfully come off of Entocort after being on it for 13 years. This did not last long and I flared up. So, my GI suggested taking a low dose of Entocort and adding...
Thanks Randy for sharing this. Glad that you could take Humira. My GI refuses totally the idea that I might get an allergic reaction from Humira as has happened with Remicade....
@Clo, haven’t started Entivyo yet. Still struggling with Rinvoq though I’m flaring up now. My GI has other calculations. When I told him that other fellows had mentioned that Stelara is a slow burner...
Susie and Tom, thank you very much. I’m still giving Rinvoq the last chance by taking the anti-bleeding meds. However, I still get new bruises every now and then. Also, I have been flaring up and...
A couple of weeks ago, I noticed that I have a lot of bruises. Also, my hemoglobin level dropped from 11.4 to 10.7 in 16 days. Saw my GI and he referred me to a hematologist and had to stop Rinvoq...
I'm a Crohn's patient and have been on Rinvoq for almost a year. When I first started Rinvoq and was on the loading dose, I had vertigo for a month and a half and took Stugeron. Then, I had severe...
So sorry to hear that! Sending you healing hugs :)...
Hope you get better soon, Randy. I had a similar bout almost 3 weeks ago. My fever was 39 C and kept fluctuating between 38.5 and 38 for 8 days. I was put then on Invanz (ertapenem) IV antibiotics...
Had an MRI that showed I have a subcutaneous fistula. For more than a month, I still have perianal pain and itching and took 4 antibiotic courses and failed them all. When I saw my GI, he mentioned...
Clo, thank you so much. That was very insightful. I understand now why people opt for colostomies. Definitely, the idea is terrifying but having this constant pain without seeing any light at the end...
Since 2013, I have started my perianal abscesses. I developed my first perianal fistula in 2016 and for which I was put on Remicade every 4 weeks. After 3 years, the MRI showed that it has healed....
Thank you Clo for your tips on how to treat fecal impaction. I failed the antibiotic round for the 3rd time and my GI put me on the 4th round of antibiotics. He ordered an MRI to rule out a perianal...
Thank you so much, Clo! It turned out I have fecal impaction and the CR surgeon prescribed a compounded laxative and fleet enemas. I could finally have a bm. As for the abscess, after the radiologist...
Hi Randy HS is an abbreviation of Hidradenitis Suppurativa. It’s a dermatological autoimmune disease that appears like infected boils in the armpit, vulva, perianal, perineal and other places. There...
Thank you, Tom. Well, I haven’t discussed with my GI his future plans yet. The tenesmus turned out to be fecal impaction and I had to see a CR surgeon. He prescribed a compounded laxative and fleet...
Thank you so much, Clo. I took antiemetic tablets before taking the antibiotics yet I couldn't tolerate the nausea and had to stop them. When I saw my GI, he changed them to rifaximin and...
My immune system has been very active lately. I keep having perianal abscesses and have had 3 since the beginning of this year. Given that I have long-standing Crohn's and started to have numerous...
Thank you so much Clo for sharing your experience. Yes, abscesses are so painful. I'm now on 3 antibiotics and I'm struggling and trying my best not to throw them up. I don't think I'll be able to...
Thank you Susie. Saw my GI and we discussed all options out there. He mentioned that Skyrizi is similar to Stelara so it won’t be successful for me as I failed Stelara. He added a new antibiotic...
I have now a confirmed diagnosis of HS along with Crohn's. It's really challenging. I keep having this recurring perianal abscess, which would in turn, activate the previously healed perianal...
Have been on it low dose for years. It has helped with Remicade....
This is my 8th month on Rinvoq. Since November 2023, my total cholesterol level was 211. It has always been within the normal range before starting Rinvoq. I tried to control it through diet but in...
Thank you so much, Clo. It’s you who has been a fighter. I really appreciate your insightful posts; they have explained a lot to me. Wish either my GI or my CRS are that understanding as yours. Mine...
Thank you so much, Clo. Scheduled for the MRI fistula tomorrow. It’s day 6 after I had started the antibiotic and the abscess is still there. Actually, they look like 2; one hard felt lump that...
@Clo. Thank you very much for sharing your experience. My GI insisted that I have to see a colorectal surgeon to examine it but I refused as I’m afraid that any cuts in the abscess may cause fecal...
HS is hidradenitis suppurativa. I appreciate your pieces of advice but I am asking these questions as I was looking for someone with a similar experience. I’ve always learned from other people’s...
You are right. I don’t think I’m going to do this at the time being and have to postpone any drastic changes in my diet until my new abscess gets healed....
When I was on Remicade, I had multiple Covid infections. I had then to postpone my infusions for 14 days. Hope you get better soon!...
Have an abscess near the opening of the vagina. It’s very painful and there is a burning sensation. Thought it was caused by HS but it’s under the skin and I have never had HS in that area before...
As you might know. I have been on Rinvoq for 6 months now. Though the colonoscopy, pathology report in addition to bloodwork show mild inflammation (notable lymphoid hyperplasia with no active...
Why does the total cholesterol level keep rising though I’m on the 30 mg dose? It was lower on the 45 mg dose. It was 211, now it’s 242 and a lot of fellows here and in another support group told me...
@Geezernow: Lucky you! Fingers crossed...
Thank you all. Turned out it’s not a form of blockage or obstruction but it was caused by the laxative I had taken. I’m still thinking of bringing the issue of not having a CT enterocolonography for...
My previous post was about a severe abdominal pain that I had in my lower right side. Finally I could see my GI. He told me that I have a reaction to the laxative I had taken (prucalopride). Btw, I...
I’ve had a colonoscopy more than 10 days ago and my GI mentioned that my colon looked “so good”. I kept being constipated for 7 days afterwards. Took a strong laxative the night of the 6th day. The...
@Bacon Girl. Yes, I still have my appendix. I don’t have SIBO now as I don’t have diarrhea. I used to have it a lot before but would think about it. @Straydog. My GI had mentioned it before he put me...