What are your thoughts on biologics?
Biologics are one type of treatment for IBD that help reduce inflammation. Answer any of the prompts below that apply to you.
•If you're currently on biologics, share your experience. Did you find one that worked right away? Did you have to switch to find one that worked? Do you experience any side effects?
• If you were on biologics in the past but not anymore, what made you stop?
•If you're considering going on biologics, is there anything making you hesitant?
•If you haven't or wouldn't consider them, tell us why!
All experiences are valid!
IMO, testing must establish a direct link of an autoimmune disorder to bowel inflammation before the use of potentially dangerous biometrics. I have seen medical flow charts which assume a connection between bowel inflammation and autoimmune disorders with no testing first, often based on the lack of relief from conventional treatments only.
This is a great perspective. Thank you for sharing your opinion. I think you are on to something here. I hope you have been feeling okay lately. Best, Elizabeth (team member)
I've been on Remicade for 12 years and my UC is totally controlled... however whenever anything else happens to me (had vasculitis last year) then the first thought is 'side effect'. The lack of post marketing data correlating biologics and adverse events should be adressed.
Hi
. It is an issue that once a drug is through the trial phase and on the market the primary way that adverse events are collected is through direct reporting. It is important for individuals to ask (or insist) that their doctors report potential adverse events/side effects or self-report. Here is the FDA MedWatch page for reporting and learning about these events: https://www.fda.gov/safety/medwatch-fda-safety-information-and-adverse-event-reporting-program. How are you doing now? Best, Richard (Team Member) I am part of a research programme in England. I started on Entyvio which worked well for 2 years, then I was moved on to Humeira, and again I was in remission for 2 years. Then after 2 years the inflamatory markers in my blood went up and symptoms returned, so now I’m on Stelera the past 18 months, and so far, so good. 👍
I started Entyvio in October 2023. I’m currently on Sulfasalazine as well.
I should mention that I have had Ulcerative Colitis for 30 years, diagnosed in 1994.
I also have Sarcoidosis.
Both of these diseases cost me my liver, I was transplanted in May 2021. I am concerned about side effects- I started having a problem with rashes on my arms, legs, and back around the same time I started the Entyvio. It may be just a coincidence, or maybe it’s a side effect. Tomorrow I am having my umpteenth colonoscopy to see what things look like in there. I will tell the doctor about the rashes I have and see what he says. I also have an appointment to see a dermatologist next week.
Being retired and on Medicare, I’m not paying anything out of pocket. I am paying a small charge for the Sulfasalazine. When I was working, I was able to get Asacol with a reasonable co-pay. It’s not possible now, but I seem to be doing ok.
The colonoscopy tomorrow will determine what to do next as far as meds go, as well as the usual check for inflammation and polyps.
All things considered, I’m not doing too bad…Hi
. Hope the test yesterday went well. It is good that you are going to see a dermatologist. There are a number of potential causes for the rashes. I can tell you that my wife has a severe form of a different autoimmune condition (in her case juvenile idiopathic arthritis) and after she started a new biologic about five years ago she developed a form of psoriasis. There is no way to be certain if the new biologic was the trigger for the psoriasis, but it is a possibility. More importantly she was able to start a treatment (in her case some topical creams) and it is well controlled. Hoping you are able to get some answers and treat your rashes. Best, Richard (Team Member) With Entyvio i developed horrible side effects like weight gain swelling in feet and ankles.
I was on Infliximab/Remicade for about 3 years. Good suppression of symptoms but it ended up damaging my kidneys. Have been off it for a year and still have suppressed kidney function. This is one of the potential side effects unfortunately.
Thank you,
, for sharing your experience with the community here. I am really sorry to hear that you experienced kidney damage from the Infliximab/Remicade. Unfortunately, as you mention, this can be a potential side effect, and everyone has to decide from themself about the potential benefit vs the potential side effect when it comes to these types of treatments.
How you are doing currently? Are you able to manage your kidney function in addition to your inflammatory bowel disease well? Or at least experience some relief? This community is here for you! -- Warmly, Christine (Team Member)
