Confused and frustrated
I have UC for almost 30 years and have been able to manage it with Sulphasalizine and some use of topical enemas.(both steroid and non steroid) About 3 years ago, I started having strong flares and the anti inflammatories have stopped working. I started Humira and saw limited results, but had a lot of side effects, like congestion, fatigue, and Nausea. My Dr switched me to Entyvio and I have been on it for about 7 months and am still getting mixed results and still having the same symptoms as the Humira. I did do a dose of Prednisone, which worked with the Entyvio, but once I came of the Prednisone,(or reduced the amount) the symptoms came back and I am unsure what to do next. I am thinking of dropping the Entyvio and trying something else as I am getting little relief, but a lot of side effects. I am sometimes unsure with being on the anti-immune system infusions if the side effects are the UC or the meds. I am really frustrated and confused. Has anyone had similar experiences or offer any encouragement?
Hi
, I am so sorry you are going through! Switching meds is never easy. I am also still trying to figure out what biologic will work at what dose (I tried Humira and then moved to Remicade - which worked okay, but started to lose efficacy after a while). I've noticed that any side effects I have with the biologics are present for a day or two after the injection/infusion but that otherwise they don't last. Are yours happening for weeks afterwards? -Eshani (IBD Team Member) Hi there! Thank you for reaching out! Yes, the symptoms seem to linger for prolonged periods of time, but not 100% sure it's not the UC. I was getting the Enytvio infusion every two months and it staying in my system long enough. They just moved me to monthly. I am due for my next infusion this Thursday, but am still lousy for waves every day. I am trying to decide if its worth another infusion as the results have been mixed at best.
Hi
, yes, sometimes it's hard to tell what is the disease and what isn't. Have you talked to your doctor about the symptoms? I would have that conversation before stopping the medication, personally. -Eshani (IBD Team Member)
Sorry you aren't having any luck with the biologics. I was on Remicade for 8 years before it stopped working and am now in Humira but I have been lucky as I know others like you have not been so lucky.
There are a number of other biologics now you can try. Sometimes what works for others might not work for you. I had one side effect with Remicade but only lasted a few hours.
Have you though about asking your doctor about clinical trials in your area? There are a few new drugs out there.
Let us know how you get on.
Vern - IBD Team Memberhey, I’ve been dealing with UC since I was 13 and I’m now 35. Until 6 months ago I weighed 102-108 lbs my entire life and could never gain weight and avoid eating to keep symptoms at bay, a chef who eats 1 meal a day isn’t normal, from ages 21-34 I was on 0 meds with very little symptoms probably cause of the starvation … during Covid I flared up like I never had before, was extremely fed up of the pain, diarrhea, and hunger feeling, I did some research and came across a certain medication that on the Canadian govt website said is used to treat chronic diarrhea. The medicstion was an opiate. So I took it upon myself to test out self medicating. I made sure NOT TO ABUSE and use truly like medicine. 20mg in the am and 20mg in the pm, after 4 months of medicating. I gained FIFTY pounds, and 0 symptoms and was CRUSHING 3-5 massive meals a day, 1-2 bowel movements a day that were solid and the length of my arm. I was extremely surprised by these results.. has anyone else here been prescribed opiates ? What results have you had ?
