There has been an enormous amount of focus by many pharmaceutical and biotech companies in the past several years to figure out how to bring biosimilars to the hands (or doctors’ hands), specifically with regards to people with ulcerative colitis and other auto immune system related diseases.
The question that many people have, doctors, nurses, and especially patients and concerned family members is….
Do they work, and are they safe?
I am very interested to find out how people who use this website are doing if they have been using any of the biosimilars.
Some questions I have are:
How did your doctor explain the new medication to you?
Were you pressured by your insurance company to begin using the biosimilar for cost reasons?
Did you notice anything different? (positive/negative)
How have the results been?
Anything else you would like to add..?
Here are a few headlines/stories and their links that might be interesting for you:
- Systematic switch from innovator infliximab to biosimilar infliximab in inflammatory chronic diseases in daily clinical practice: The experience of Cochin University Hospital, Paris, France
- Biosimilar infliximab use in paediatric IBD
- Switching from reference infliximab to CT-P13 in patients with inflammatory bowel disease: 12 months results
Thanks again for taking a few moments to check out some of this info, for sure there are many many UC’ers who are taking biologics to treat UC, and I’m hoping that before too long, we will have some feedback from either some folks who were involved with the clinical trials and/or feedback from people who began using the biosimilars once they were authorized for use. As some of the authorizations for its use as a marketed product are different in different countries, there is definite potential that in your particular country something is not yet available, however it may be another country…(seems to be just how it works).
Thanks for reading,
Adam
I started site shortly after being diagnosed in October of 2008 with severe pancolitis (when my whole colon was inflamed).
For me, it was a very rough start with severe symptoms. Getting bounced from medication to medication was not easy or too helpful. But, I did meet another UC’er, changes several parts of my diet, and of course the rest is history.
Leave a comment, ask a question, take advantage of our past experiences here, use the search boxes, they are your friends to0:)
I’ve written 2 different ulcerative colitis ebooks, you can check them out here.
And, the Free eNewsletter, which has important updates can be joined here.
HI! I stumbled on your site after listening to a youtube video with Tara Rosas Crohns disease. I do have concerns about remicade. My daughter is 15yrs old and has been diagnosed with crohn’s disease. She has been taking remicade infusions for 2yrs now. I have very mixed feeling about this drug. She has not taken any other drugs since her diagnosis. Currently she has no symptoms. We have talked to her dr several times about weaning off remicade and they are very hesitant. They tell us she will need to be on this med for her life! I do not believe that and we have been looking for alternative methods. My daughter has gained 60 + lbs on remicade. She also gets severe headaches after her infusion. She does not like how she feels, especially the weight gain. The doctor does not see this as a problem. She can eat now but it seem she has very little energy. I have read some thing about remicade and do not want her to be on this medication her whole life. Is it possible to wean her off the med or should she stop completely?
Your doctor sounds like a jerk, as he dismisses your daughter’s feelings and symptoms. Side-effects should not be taken lightly. Massive weight gain, malaise, headaches, etc should not be tolerated. I would do some research into the long-term side effects of the medication your daughter is on. I personally think it’s dangerous to purposely weaken someone’s immune system… My personal experience: I was very very very sick with a severe bacterial infection back in 2015 and I almost didn’t make it, and I was NOT on an immuno-suppressant, but if I had been, I most certainly would have died. Also look into immuno-suppressing drugs and cancer statistics, especially lymphnoma… And make your decision based on not only the short-term side effects, but also the long-term risks. I’d definitely look into seeing a different doctor, and at the very least, get another opinion.
Thanks Polly,
We did find another doctor to work with us ( my PCP) She is willing to work with us so she can wean off the medication.
Yes it is possible to wean off the med, and yes it is possible to get off them completely.
Stay on the med. You don’t want to lose something which works. No symptoms is the best.
Eventually, she might develop antibodies to the medication.
Until then, if Remicade is covered or you have no problem paying, stay on it.
I started on infliximab following a flare that didn’t settle with temporary prednisone use (i was not keen on using steroids at all for any length of time). I had had several years of successful uc treatment with a combination of 6mp and salofalk sachets before starting on infliximab.
I had immediate resolution of my flare following the first infusion. I had infusions for 5 months (Oct 2016 – Feb 2017). Approximately one week after each infusion i would get quite lethargic and nauseated – i didn’t attribute any symptoms to the infusion because they took so long to appear (i also work in a hospital and thought i was just picking up whatever bug was floating around).
It turned out that due to infliximab use, i developed tuberculosis. The screening blood test for TB (Quantiferon gold) had returned a negative result prior to commencing infliximab.
All quite scary since TB is very uncommon these days! The theory was that i had picked up a TB infection during a trip to South America (2014) that lay dormant until my immune system was lowered with the infliximab use.
So my infusions were ceased (Feb 2017 – June 2017) until i had my TB under control. I had no active colitis flares during this time – which is common as they work out dosing of infusions based on population norms; some people require regular infusions, while some can tolerate up to 18 months between infusions.
When i restarted my infusions, i unfortunately had an allergic reaction! (Not major, thank goodness, i had great nurses looking after me and they brought everything under control very quickly). Apparently this is also very common – reactions following a cessation in treatment – and I’m now no longer eligible to receive infliximab (i have heard that this is a 5 year exclusion)
So to cut a long story short, I’m now on Humira (adaludimab – same active drug; in the ‘mab’ family – but different mechanism) which is going fine.
NB I’m from Australia and therefore haven’t had to deal with insurance companies as I’ve been treated under our public health system.
Please feel free to ask me any questions!