Hi, I was diagnosed with Crohn's in Sept. 2012. I had a fistula and a micro-perf of my pouch. After 19 days in the hospital, my doctors decided to start Remicade. NONE of the testing-biopsies, blood work... showed Crohns. So, I've been on it since and have started to experience pain in my lower back that comes and goes, and in my ankles. My last 4 blood checks were totally normal, with SED rate as low as 14 (the most recent, it was 33). I'm on 9 week cycle, and my GI doc has ordered go back to the single dose.(the doubling the dose is a long story). I was under the impression that once you increase the dosage, you can't go back. Of course, did I ask him yesterday when I was there-no. Can anyone help me with this issue? Thanks!
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What was the reason to reduce the dose? Was there an assumption that your arthritic symptoms are a side effect of the Remicade?
I would wonder if you have developed antibodies over time and Remicade is losing effectiveness. If that is the case, halving the dose will certainly show an increase in your symptoms. Maybe time to switch to Humira or Simponi if your symptoms worsen or do not improve.
I don't think that it is true that you cannot reduce the dose of Remicade once you are on a higher dose. The idea is to get into remission, then reduce the dose/frequency to whatever sustains the remission. I believe what you are thinking of is when you come completely off Remicade long enough for it to completely clear the system. That is when antibodies can really form in earnest and returning to Remicade could be useless or bring on severe allergic reactions.
Jan
I would wonder if you have developed antibodies over time and Remicade is losing effectiveness. If that is the case, halving the dose will certainly show an increase in your symptoms. Maybe time to switch to Humira or Simponi if your symptoms worsen or do not improve.
I don't think that it is true that you cannot reduce the dose of Remicade once you are on a higher dose. The idea is to get into remission, then reduce the dose/frequency to whatever sustains the remission. I believe what you are thinking of is when you come completely off Remicade long enough for it to completely clear the system. That is when antibodies can really form in earnest and returning to Remicade could be useless or bring on severe allergic reactions.
Jan
Thank you Jan. Do you think the symptoms will come back? Worse?
No, my doc didn't think my joint/back pain was the result of the Remicade. Am I putting too much on the blood results? It's interesting that my colorectal doc mentioned getting off Remicade when I saw him last month. But he sounded very positive about it.
He said let's cut your dose in half. With the caveat that if things go down hill, I will have to go back on a biologic.
I appreciate your time.
Lisa
No, my doc didn't think my joint/back pain was the result of the Remicade. Am I putting too much on the blood results? It's interesting that my colorectal doc mentioned getting off Remicade when I saw him last month. But he sounded very positive about it.
He said let's cut your dose in half. With the caveat that if things go down hill, I will have to go back on a biologic.
I appreciate your time.
Lisa