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13 weeks on azathioprine and ............

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Ulcerative Colitis
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Posted 5/5/2017 7:38 PM (GMT 0)
I have been taking azathioprine for 13 weeks now and have reduced my steroids from 40 mg, every 14 days, to 15 mg. I am feeling really frustrated because I am still going about 10 times a day (3 to 4 times on a morning then am okay until late afternoon then I go about 4 times more). I still see blood but not every time and it is not very much. In fact if I didn't catch it on the paper I probably most of the time wouldn't know it was there.

I really need some reassurances that this is still early days on the azathioprine or shuld I have sopped bleeding by now and seen a reduction in my bms. I have been taking pred for over a year and it never got me into remission. I know I have come off it.

I had a blood test to check metabolites last week but not had the results yet. I take 150mg of AZA a day. Could this be increased?
I feel so fed up. I really waned the aza to be the solution.
Posted 5/5/2017 8:46 PM (GMT 0)
I think you should be thinking more along the lines of why isn't the pred taking care of it. You prob shouldn't be tapping down if your symptoms aren't gone.

i don't think Aza works to stop specific symptoms. It works on the immune system in general.

When I'm on pred, I don't taper if I still have symptoms. As soon as I see blood or get D, the doc has me stay where I am on the pred dose for a few more weeks or increasesnit, depending on how bad it is. Again, my doc hates pred as much as I do so he hates to do that. But it all depends on what's worse for you. I'd put more faith in pred to get u back feeling better and look at aza as a long term fix in combination with other meds.

Also your doc can do a blood test to see what your levels are for the aza- if it's at a therapeutic level. Maybe you can ask for that?

Sorry you're dealing with this! Hope you find some relief.
Posted 5/6/2017 2:20 AM (GMT 0)
Any discussion about adding biologics like humira or remicade? 6MP (sister med to aza) wasn't enough for me and i needed remicade. I fpund remussion through remicade.
Posted 5/6/2017 7:48 AM (GMT 0)
Remicade or Humira out of the question because of my other health problems. Surgery is the next step.
Posted 5/6/2017 11:39 AM (GMT 0)
Azathioprine is dosed 2 to 2.5 milligrams per kilogram of body weight for ulcerative colitis patients. I weigh 150 pounds (or 68 kilograms). 68mgs x 2 = 138 mgs per day. 68mgs x 2.5 = 170mgs per day.

If your weight is similar to mine then 150mgs a day of azathioprine is just right.

The other factor in azathiprine dosing is your CBC and LFT blood test results. If your numbers are out of range on the high or low range then you might be limited to lower doses.

You can always ask your gasteroenterologist about even higher doses (like 3.0mgs per kilogram) given your limited options. Sometimes being slightly low on your WBC (leukopenia) and stable is fine if your symptoms are minimal. My gasteroenterologist says he does that for Crohn's patients sometimes and occassionally for UC patients.
Posted 5/6/2017 1:41 PM (GMT 0)
I weigh 180 pounds. So without converting it to kg I guess I could afford a dose increase of possibly up to 200mg. liver function tests are normal and so is cbc. I do have neutropenia so have to be cautious there.

Would lower doses take longer to reach therapeutic levels?

I am going to phone the specialist nurse on Monday.
Posted 5/6/2017 1:56 PM (GMT 0)
With neutropenia they likely won't increase your dose of azathioprine. You can certainly ask but that would exasterbate it. A dose increase typically take 6-8 weeks to be seen.
Posted 5/6/2017 6:15 PM (GMT 0)
Since you can't add more meds or increase doses, have you tried VSL 3 probiotic or diets for UC? The dose for VSL 3 is super high in research studies, but studies show that remission/response rates are really high for VSL with meds compared to meds alone.
Posted 5/9/2017 2:59 PM (GMT 0)
There is blood test that checks Aza level in your blood. It will tell you that you don't have enough in your blood or You have it enough but it's not working for you.

Blood test checks MMP and TGN levels. I did with Prometheus but I think there are generic ones too.

Hope you feel better soon
Posted 5/11/2017 9:23 PM (GMT 0)
Blood test came back that I am not at therapeutic levels. They were originally being cautious due to my neutropenia but my white count has been within normal levels for the last few months.

They have increased my dosage to 200mg.

If dosage is based on weight, what would happen if I lost weight? Would I be over dosing.
Posted 5/12/2017 1:21 AM (GMT 0)
A few pounds up or down don't matter. If you were to loose or gain a lot of weight then I'd contact your doctor.
Posted 5/12/2017 2:10 AM (GMT 0)
You will be doing blood work every few months, so you will know if any issues come up. You could always reduce the dose to get things back on track. I was hoping that you had an update saying you were doing better, but I guess finding out you're not in range is at least a step to getting you healthy.
Posted 5/29/2017 2:04 PM (GMT 0)
Well, I have been taking 200mg of Azathioprine now for two weeks and have reduced the pred to 7.5mg.

When you have a dose increase is it still slow acting? How long would it be before I would notice any real benefit.

My frequency for most of the time is 4 on a morning and maybe two on an evening still with blood. Some days however I can go 8 plus times with some urgency and diahrea. I have never been able to get off pred and have never been on a dosage as low as this. I would have expected to be really bad at this dose so maybe the aza is working a bit. I am still taking 3600mg of Mezavant and using asacol suppositories in the morning and salofalk enemas on a night.

I feel so fed up. I have been flaring now for nearly two years. I am stressed out with this and also stressed out with my work and my teenage sons. I just feel like I am getting nearer and nearer to surgery.

I am going to Spain in August and really want to be well.

Is it still early days on aza?
Posted 5/29/2017 2:35 PM (GMT 0)
Early days, yes. It will take at minimum of 6-8 weeks to reach ideal therapeutic (healing) affect on aza. If they've changed you dose (typically they do start low dose and increase dose) than it's 6 weeks since the last increase. With dose increases, it's usually 2-3 months until you know for sure. 200mgs of aza sounds like a good dose to stay on.
Posted 5/29/2017 3:18 PM (GMT 0)
Thanks John. That has given me a glimmer of hope.
Posted 5/30/2017 9:20 PM (GMT 0)
I took azathioprine for more than 8 months at three different dosage levels. The only observable effect was that it lowered my white blood cell count, which led to my GI discontinuing it. Some UC cases just don't respond to it.
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