22 yrs of mildish UC but my doctor is recommending Entyvio/Vedo after a recent flare. My calproc numbers have fluctuated between 80 and 160. I feel I might be able to achieve remission with good discipline but my doc is holding out the carrot of the wonders of Entyvio and a flare free life. I don't relish the idea of infusions but living flare free is certainly and attractive idea. I thought I would ask the brains trust for adice. Does anyone have any thoughts on what they would do in this position? Would you stick with Mesalazine and attempt to achieve remission or is Entyvio worth the effort?
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To Entyvio or not to Entyvio
- Thread starter Jhutc
- Start date
Thank you for responding. The flares are not often and tend to be more self inflicted (I have had a number of periods of long remission which lull me into a false sense of security), they can be reasonably bad calproc 300 but not bad by the standards of many of the members here. I am in Australia so the coverage is pretty good and as far as i'm aware the out of pocket expenses for Entyvio are pretty low if you qualify for it.
It is always a bit line ball so I tend to take the advice of fellow UC/C sufferers very seriously. Doctors have protocols for when they suggest things that are not based on personal experience.
It is always a bit line ball so I tend to take the advice of fellow UC/C sufferers very seriously. Doctors have protocols for when they suggest things that are not based on personal experience.
I was in a similar situation 2 years ago, wondering if I should start Entyvio. I decided to go ahead and had a very good response. Unfortunately after two years my body stopped responding to it and unless something changes I will have to discontinue. I had no side effects but the improvement wasn't 100%. It stopped the flares and substantially improved my condition, but I wasn't completely symptoms free. Apparently it is normal for the drug to stop working after a while. If you have the option I would time it with your life plans. I 'wasted' my first good year on covid lockdowns, but was able to travel a lot in my second year.
Bufford
Well-known member
- Location
- Northwestern Ontario
It doesn't sound like your symptoms are all that bad. I've been offered Entyvio but declined due to the bad experiences I have had with other treatments including Remicade which was a very unpleasant experience forcing me to stop after the 3rd loading dose. The other thing to consider are that biologics including Entyvio put a strain on the liver. Little is known about the long term effects because these drugs are new. I would first look at options such as diet and lifestyle before taking these treatments.
Yes, I am wary of any new drug being pushed as the solution to my problems. I believe my UC was triggered by taking Accutane (Roaccutane) which was pushed by my dermatologist.
I have in the past managed quite well with a disciplined lifestyle but as soon as I relax too much I can trigger a flare. My GI is really pushing hard for Entyvio. He seems to think that he gets a good response with it and it is the safest option, as it is nearly 10 years old he said he 'can sleep at night' prescribing it. I really hope this isn't a kick back situation from the company that makes it (certainly not making that claim though).
@nofun can I ask what your fallback option was? i.e. what are you taking now?
There is a study at the moment looking at the results of taking mesalazine and Entyvio https://clinicaltrials.gov/ct2/show/NCT05205603 but it is due to complete in 2025.
My thought is that as Entyvio seems to stop working at some point it make a lot of sense to keep taking mesalazine with it. Anyone know more about this combo therapy or have any thoughts about it?
I have in the past managed quite well with a disciplined lifestyle but as soon as I relax too much I can trigger a flare. My GI is really pushing hard for Entyvio. He seems to think that he gets a good response with it and it is the safest option, as it is nearly 10 years old he said he 'can sleep at night' prescribing it. I really hope this isn't a kick back situation from the company that makes it (certainly not making that claim though).
@nofun can I ask what your fallback option was? i.e. what are you taking now?
There is a study at the moment looking at the results of taking mesalazine and Entyvio https://clinicaltrials.gov/ct2/show/NCT05205603 but it is due to complete in 2025.
My thought is that as Entyvio seems to stop working at some point it make a lot of sense to keep taking mesalazine with it. Anyone know more about this combo therapy or have any thoughts about it?