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Remicade seems to have failed... next course?

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Ulcerative Colitis
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Posted 3/27/2016 11:15 PM (GMT 0)
Hi all.

I have been flaring constantly since December of 2014.

I was hospitalised back in January and given a dose of IV steroids followed by a course of oral steroids and started on Inflectra (a Remicade biosimilar). Initially I saw some improvements in my condition, although for the majority of the time I had a strangely swollen neck, so I didn't really get to enjoy the benefits of being less UC afflicted.

Now I've had my 3rd dose of Inflectra on the 16th of this month and have tapered down to 5mg of steroids, and the symptoms are returning. Starting to notice quite a lot of blood in stools, stool frequency (still around 3 times a day) is increasing, I can tell that this the familiar downward trend.

I was told by my IBD nurse that if Remicade didn't work I am entitled to try either Entyvio (vedolizumab) or Humiria.

But my question now is: do I wait and try a higher dose of Remicade? Or do I switch (most likely to Entyvio, the infusions are shorter and that sounds more promising). Has anyone switched biologics and had success?

Regardless of what I do, they told me the earliest I could have another Remicade infusion would be a month, and probably the same to switch to another biologic. I could add Pentasa (meslamine) in the meanwhile? It's quite a long while to wait, especially if symptoms are severe and I really don't want to go back up on steroids, considering I've been on steroids at some level for nearly 6 months now.

As always, any help welcome.

Thanks
Posted 3/28/2016 12:31 AM (GMT 0)
They can test the Remicade levels in your bloodstream to get a good indication as to whether you may have developed antibodies, in which case no point in continuing with Remicade. If not, then I know for some more frequent infusions and a higher dosage has worked. Remicade worked for a few months with my husband but then he developed antibodies. Tried Humira next but it did not work. Many are having good luck with Entyvio, but you need to patient with that one as well.

If the mesalamine was working you should stay on that. Many continue to take the mesalamine with the biologic. Also, many doctors recommend that you take an immunosuppressant while on the biologic to try to deter formation of antibodies. 6MP or Imuran.

Good luck. If they work, and you can bear them, you may find yourself on steroids longer than you would like while you experiment with the various biologics. But they are not a long term solution.
Posted 3/28/2016 12:55 AM (GMT 0)
I failed Remicade and Humira but went on Entyvio over a year ago and what a miracle drug it has been
I have my UC under control , it did take 6 months Now I go every 8 weeks for an infusion that only takes 30 minutes turn
Posted 3/28/2016 1:02 AM (GMT 0)
I have heard they can test remicade levels, but as far as I can tell they haven't tested them, nor do they intend to. Not entirely sure why, I will ask about it.

I've already tried Imuran and was violently allergic to it. I was offered the choice of 6MP and Remicade initially and chose Remicade, I suppose I could look into 6MP but I am hesitant as I reacted so badly to the last one.

Sounds like nothing has worked for your husband, sorry to hear that. How is he now?

Glad to hear you had success with another biologic! 6 months is certainly a long time for it to kick in, though!
Posted 3/28/2016 4:17 AM (GMT 0)
How about simponi, humira or entyvio? there is also the option of increasing the dose, but the first step there is probably the antibody test to see whether you're a good candidate. I had my dose increased, since I was a nonresponder, the larger dose didn't do anything.
Posted 3/28/2016 8:53 AM (GMT 0)
I would try increased dose and shorter interval of remicade before changing medications. There are some on this forum that achieved remission with remicade slowly over a year. If/when you switch, I would try either simponi or entyvio.
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