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Should I be adding medication?

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Ulcerative Colitis
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Posted 1/13/2019 8:27 PM (GMT 0)
Hello everyone, I'll be seeing my GI this coming Wednesday and I should be getting my blood test results to see whether or not I can take aza.

Right now I'm on my sixth week of nightly Pentasa enemas (4g/100ml), Inflectra (5mg/kg every 6 weeks), and currently 10mg of Prednisone (will taper down to 0mg in 1.5 weeks).

After seeing my symptoms get worse during the first few weeks of nightly enemas, I'm finally starting to see good results (1 BM per day, less bloody mucus than before using the enemas). I think if I continue the enemas, I can get rid of these symptoms.

I think the enemas are working, so should I try aza if the doctor suggests that I try it to really push me into remission? Or should I wait a bit and see how much inflammation the enema can get rid of? I'm asking this because I'm actually sorta afraid of the side effects of aza and I don't really want to be on too many drugs if I can avoid it.
Posted 1/13/2019 8:32 PM (GMT 0)
You could wait and do alternating taper on the rest of your pred. You could add a steroid enema foam while tapering the pred as well.
One step at a time if you are having improvement.....
q
Posted 1/14/2019 1:18 AM (GMT 0)
How about upping the Inflectra to 10mg/kg every 6 weeks? I’d have your Inflectra blood levels tested before adding another medication.
Posted 1/14/2019 1:34 AM (GMT 0)
I actually got my Inflectra levels checked last time, the doctor changed my infusions from 8 weeks to 6 weeks.

My GI actually said that he doesn't want me to be on too many anti-inflammatories/immunosuppressors at once so he probably won't be too pushy on the aza I think.

My GI also mentioned that I would only be on the aza for a few weeks if I remember correctly... Is that going to do anything because I've heard and read that it can take weeks or months for it to fully take effect?
Posted 1/14/2019 4:05 AM (GMT 0)
Some type of aza or 6mp is the recommendation with Remicade, so your doc's advice does not sound right.I guess if you get antibodies you can switch to Humira or something. But a low dose of immune suppressant is recommended to keep the Remicade working - not just for eliminating symptoms.
Posted 1/14/2019 2:20 PM (GMT 0)
Tough call whether to wait or add another medication. When I am unsure of which path to take, I often wait a little while and ask for some diagnostic tests to assess where I am at. You could have your inflammation levels checked, with a FCP stool test or CRP blood test, see what they say and then decide on the aza.

Aza takes 3-months to work, so I cannot imagine using it shorter than that would accomplish anything. What your doctor might've said is aza for no longer than 2-years.
Posted 1/14/2019 7:29 PM (GMT 0)
The 5mgs/kg is a low dose, even at 6 weeks. My GI will go as high as 15mgs/kg.

You'll probably get a faster improvement from the biological increase vs's Aza.
Posted 1/14/2019 7:47 PM (GMT 0)
Upping a biologic could help but then maybe not. If you took the infliximab antibody and concentration test might help give you some data to tell whether your levels are low, and therefore an increase in dosage might help:
https://www.labcorp.com/test-menu/29496/infliximab-concentration-and-anti-infliximab-antibody
Posted 1/14/2019 8:31 PM (GMT 0)
Pretty much all IBD Drs are starting to realize that combo therapy with an immunomodulator can dramatically increase how long and well you respond to the biologic. I chose methotrexate as it has the best safety profile IMO.
Posted 1/15/2019 7:15 PM (GMT 0)
I'm going to tell my GI about my situation with Pentasa and see what he thinks (especially since he only prescribed 2 weeks). I'm also going to double check what he said about the duration I'm going to be on aza, if I decide to take it, and ask about my Inflectra levels.
Posted 1/19/2019 8:33 PM (GMT 0)
Update:
My GI said that I can start tapering off the enemas by using it every second day and he prescribed me the 2g enema.
For some reason he doesn't have the actual results of my Inflectra dosage, he suspects that it's low that's why the clinic was told to increase the frequency of the infusions. Also he asked for the dosage again because of that.
My GI wants me to start aza (for 6 months) when I'm off the prednisone and stop taking calcium supplements (is this necessary?).

Current: Inflectra 5mg/kg every 6 weeks (received 6 infusions total), nightly Pentasa enemas (4g/100ml) (starting week 7), right now at 5mg of Prednisone (will be at 0mg in 4 days), 2x calcium 500mg + vit D 400IU
Soon: Inflectra 5mg/kg every 6 weeks, 6-MP 50mg once daily, Pentasa enemas (4g or 2g/100ml) (taper?)

Post Edited (k1002) : 1/21/2019 1:46:42 PM (GMT-7)

Posted 1/20/2019 12:55 AM (GMT 0)
Calxium supplements concurrently with pred is good, as pred is calcium-leeching. Continue the supplement if you wish, no harm in it.

Azathioprine helps some.
Posted 1/20/2019 5:47 PM (GMT 0)
Just adding cal with magnesium and D.....have your iron checked as well.

Why are you tapering the enemas?
q
Posted 1/21/2019 8:58 PM (GMT 0)
My GI said that I can start tapering once I feel well enough, so I will eventually, but not soon.

For those of you who take 6-MP or anything similar, when do you usually take it? I was only told to take it once daily, 1 hour before eating or 2 hours after, and avoid milk. When's the best for full effect and more importantly with less side effects? Also I drink milk during breakfast every day...
Posted 1/21/2019 9:06 PM (GMT 0)
Hola I used to take imuran every evening after dinner. Sometimes immediately after (that's what the pharmacist's label on the box said) and sometimes up to 2 hours after. Apparently that reduces (chance of) nausea.
Posted 1/21/2019 9:23 PM (GMT 0)
about 20% of people starting thiopurines (6mp/azathioprine) experience nausea, which typically goes away after a couple weeks. To lessen the odds of that, take 6mp just before bed with a light snack. Having an empty stomach when you take them worsens the odds of nausea.

I never experienced a nausea from it.
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