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Methotrexate and Remicade Infusions

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Ulcerative Colitis
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Posted 3/25/2017 5:25 PM (GMT 0)
Hi, I have been on Methotrexate and Remicade Infusions for almost a year now with little to no success.

I would like to know if anybody else has the same experience. or if there is anybody who reached remission around or after the one year mark.

I am considering coming off these medications and trying something else as I feel I am poisoning my body for nothing.

If there is hope that there is remission after 1 year on these drugs I would hate to quit and waste all I have done so far.

I would also like to know if anybody has achieved remission on these drugs and gone off them and what was your result. Have you had to go back on them and if so were your results good and speedy?

I would really appreciate any feedback you have to offer.

I have had chronic ulcerative colitis for over 30 years.
I have been on many combinations of drugs over the years..none helped me.
I have had long periods of remission.
Smoking cigarettes kept me in remission and every time I have quit smoking within 2 days I am in full blown colitis attack mode.
I have been cigarette free for almost 5 years now, which means for me that I have been in full blown colitis attack mode this whole time.

I currently take 25mg. Methotrexate once a week
I am currently on 600ml Remicade every 6 weeks.
Posted 3/25/2017 11:12 PM (GMT 0)
Sorry to hear about this.

Any idea how the inflammation itself is looking compared to a year ago?

Have you ever noticed any improvement on these drugs at all?

If you really feel it's not working, it is probably time to try another biologic. I don't think you are going to see results after a year if you haven't yet.

Could you get a levels test done to see how much of the drug you have in your blood? I assume it would want to be known how the levels are. Maybe you don't have enough of it in your body. Maybe you have enough and it's not working. Maybe you have built up antibodies to stop it working.

What's your GI saying about all this?
Posted 3/25/2017 11:14 PM (GMT 0)
I wouldn't see it as wasting what you've done so far. Obviously it's not ideal but the only way of knowing if the drug will work on you is to try it, so it is a necessary step in seeing if you can find something that works.
Posted 3/26/2017 1:10 AM (GMT 0)
I was in the same position, but I was deemed a non-responder long before the one year mark. I think if I were in your shoes, I would probably get stool tests to try to rule out any other possible situation impacting symptoms, and if nothing is found, I'd move on. Did you have the test to see if you have antibodies to Remicade? A year without a noticeable change in symptoms is definitely too long. You should have seen changes immediately, or after you completed the loading doses. I'd be mad at my GI if they let me suffer for a year waiting for nothing. I had surgery and it's the only way I've been able to be free of all the drugs.
Posted 3/26/2017 10:59 AM (GMT 0)
If you haven't seen an improvement after 6 weeks on remicade then it's time to try sonething else. There's other biologics like entyvio.
Posted 3/31/2017 2:03 PM (GMT 0)
Hi Maid Marion,

I started out a year ago on Remicade, and Methotrexate was introduced with my second dose. The Methotrexate actually induced my symptoms, so having had two tries at restarting it with no success, I am now on mono-therapy with Remicade and am more or less symptom free.

My GI didn't initially want to try mono-therapy, but as I wasn't developing antibodies and my inflammation had gone down, he admitted it was looking like the methotrexate was the culprit. It only took a week or so after coming off that the symptoms subsided and the Remicade has been wonderful since - it may be worth discussing a trial of this with your GI?
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