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What's next? 6-MP doesn't seem to help.

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Ulcerative Colitis
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Posted 6/3/2016 7:15 PM (GMT 0)
I developed intolerance to mesalamine, so I've been on 50mg mercaptopurine (6-MP) for the last 6 months. My blood work is fine, supposedly, but my year+ long flare shows no signs of letting up.

I'm only functional day-to-day because of prednisone, which I desperately want to stop using. Unfortunately, when I try to taper my symptoms come back at around 20 mg, and then I need an even higher starting dose to get it back under control again. I'm guessing I'm prednisone dependent. We did try a very slow taper 2.5 mg every two weeks and that still didn't do the trick.

I'm going to my GI doctor next week but she tends to rush through appointments. I want to go in knowing what the "usual" next steps would be based on your experiences...

1. Should I expect increasing dose of 6-MP and see if that works by itself?
2. Or... should I expect trying a different immune suppressant (Imuran?)
3. I'm open to trying biologics. Is Remicade usually the first one tried?
4. If we go to Remicade, would I still stay on 6-MP?

Thanks!
Posted 6/3/2016 8:12 PM (GMT 0)
1.) 50mgs is a pretty low dosage of 6mp. Possible it could be raised, it all depends on your current bloodwork. Yes, if you're bloodwork is all within range for key values. No, if you're currently very close to being out-of-range on any of your key blood test results. 6mp is weight dosed and a 1.0 to 1.5 milligrams per kilogram dosage is prescribed for managing ulcerative colitis. So, a 68 kilogram (150 pound) person would have a 68mgs per day dosage (at 1.0 mgs per kg) or a 102 mgs per day dosage (at 1.5 mgs per kg).

-If you have a recent CBC blood test, look at your WBC, RBC, and platelet related results. Make sure they are not on the low end of the test's in range values. Low values for any of the ones I mentioned are a definite No on dose increase.
-If you have a copy of your hepatic function panel (lft) test results then see if your numbers are safely within the tests normal range. Elevated out of the range values indicate a possible toxicity response (have elevated liver enzymes) and is a definite No to a dose increase. In this case, ask about adding Allopurinol.
-You could ask for a Thioprine Metabolites blood test to see if you're within therapeutic range for 6mp. It gives you 6-TG and 6-MMP scores that help determine optimum therapeutic dosing.

2.) No. I think 6mp or Imuran would produce the same results.

3.) You should have a choice between remicade, humira, simponi, or entyvio. The most common one's tried first are humira (a self-injection) or remicade (given via IV).

4.)Yes. The best results and least odds of antibody formation (to remicade/humira) is achieved when the patients is concurrently on both 6mp and a biologic. I tapered off of 6mp after achieving remission. Studies only say initially on both.
Posted 6/3/2016 9:33 PM (GMT 0)
Thank you, iPoop. Your response was very helpful and informative. I'll ask my doctor about the Thioprine Metabolites blood test as you suggest.

I was very ill when first put on 6-MP and only weighed 140 lbs. I'm back up to 160-165 lbs (~75kg) now which is a good weight for my height (5'11"). So probably I should go up on the dosage of 6-MP a little based on my weight increase alone. That's something I hadn't considered before so thank you!

My last blood work was done last week. The nurse calling with the results told me over the phone that everything was good. I pulled the actual numbers from their online website today. The hepatic liver panel was all in normal range, so yay! There were a few things flagged on the CBC test but those flags are mostly in the "near normal" category. Of the ones you mentioned WBC is slightly high, RBC normal, platelet stuff normal except MPV slightly high.

One thing that was new to me was the immunoglobulins test on the CBC:
IG% [High] 1.3% (Normal range 0.0-0.5)
IG# [High] 0.14 K/uL (Normal range <0.04)

I tried to compare it to older tests done earlier in the year but the IG test isn't even listed on them. Is having high antibodies just a part of active UC, or is it a result of the 6-MP and/or prednisone? I'll have to ask my doctor about this when I go in.
Posted 6/3/2016 11:48 PM (GMT 0)
6mp lowers your WBC and you said yours was high, your weight has increased since the initial dose was given, so all of these point combined point to a dose of 75mgs - 112mgs daily. Ask about an increase and also the thioprine metabolites test. If your gastroenterologist agrees on a dose increase (given your bloodwork) then it'll be about 6 weeks until you notice the results from that increase. You might be able to get by without the biologics. I'm not familiar with the IG results, they didn't do that for me. Good luck.
Posted 6/5/2016 4:58 PM (GMT 0)
@ipoop I've been using Imuran at 100 mg dosage for two weeks, I should ask for the same tests and look for the same things right? I'm around 61 kgs, is the dosage too high? When do you think I should ask for a Thioprine Metabolites blood test?
Posted 6/5/2016 7:27 PM (GMT 0)
Imuran is dosed very differently. It's 2.0 to 2.5 mgs per kilogram for uc. For 61 kilograms a dose of 122 to 152 mgs a day would be typical. Again dependent on bloodwork. Yes, you should be monitored through bloodwork, CBC and LFT. Thioprine Metabolites is a good diagnostic if you're struggling and not sure if you're within therapeutic range.
Posted 6/8/2016 7:58 PM (GMT 0)
Just an update as I saw my GI doctor today....

I thought it was odd, but she did not want to increase my dose of 6-MP despite my weight increase and WBC results. She does want me to start a biologic, though. She recommended Entyvio because it has less side effects than Remicade or Humira, and is most effective for UC patients. She said something like 80% success rate with it.

However, because it's a newer drug and more expensive, she said most insurance companies will not cover it until other biologics have failed. Guess a call with my insurance provider is in order!

In short, I'm hoping to try Entyvio if it's covered, if not going to try Humira.
Posted 6/9/2016 2:59 PM (GMT 0)
The biologics do fairly well, but it is less than 80% for remission. Maybe symptom reduction is 80%. Nothing today is near 80% for remission.

good luck
Posted 6/9/2016 4:15 PM (GMT 0)
Seems a lot of gastroenterologists have little faith in immunomodulators (Imuran, 6mp). Wonder if it just isn't as good as expected or something.

Seems a bit overly optimistic on 80 percent. The general odds for biologics are 62-65 percent see an initial response. Of that initial group who were responders, 32-34 percent go on to achieve remission within a year. They're awesome when they work but like any treatment for uc, nothing works for everyone. I'm currently in histological remission thanks to remicade.

Entyvio is a gut-specific biologic, meaning it only surpresses the immune system within your digestive tract. It should therefore have less risk of infections elsewhere in the body (like the rest of the biologics do).

I'd have your doctor formally request entyvio, if it's denied then choose among remicade, humira or simponi.
Posted 6/9/2016 8:06 PM (GMT 0)

iPoop said...
Seems a lot of gastroenterologists have little faith in immunomodulators (Imuran, 6mp). Wonder if it just isn't as good as expected or something..

I recently was recommended by my gastro doctor to switch to 6mp as she said she has had the best results with it. It's interesting though ... it does seem like there are favorite drugs for different doctors.
Posted 6/9/2016 10:16 PM (GMT 0)
After doing some reading on Entyvio Ulcerative Colitis studies, my doctor saying 80% did seem wildly optimistic. I was reading more like 44-48% obtain clinical response after 6 weeks, and 42-45% maintaining remission after 52 weeks. I think the slightly higher rates came with treatment every 4 weeks versus 8 weeks.

My biggest concern on Entyvio is cost. While I have insurance it still can be staggering to have to meet the deductible and/or out of pocket max. I read some people were getting billed upwards of $30,000 for an infusion (although how much was actually paid by the insurance or the patient is another matter). Regardless, I would much prefer the lower risk of side effects after being on prednisone so long.

It's still so tempting to just go with Humira because it sounds so much easier to deal with as a self-administered shot. It also looks like it would be so much cheaper on my out-of-pocket costs through my pharmacy plan.

Anyway, still working on seeing if I can even get Entyvio approved..
Posted 6/9/2016 11:08 PM (GMT 0)
If you get approved, sign up for entyvios patient copay assistance /www.entyvio.com/entyvio-connect. Humira has a similar one.

I'm not on entyvio, but remicade. I'll use it as an example for the billing. My insurance is billed $6,600 for my remicade for two months worth. They disallow half the cost, magically making it disappear. It's now $3,300 and the insurance pays most. I'm left with $30 for my doctors appointment copay ( the infusion is in my doctors office) and a $5 copay for remistart (remicade's patient copay assistance). Remistart pays $500 for me. My total cost $35 every 8 weeks for remicade, my only uc medication.

Disallowing half the bill is typical.
Posted 6/10/2016 12:54 AM (GMT 0)
Simponi is self administered and it's supposed to be less painful than Humira. I only tried Simponi, no Humira, so I can't tell you which is easier/better. All I know is that none of the biologics worked for me. I had much better luck with 6mp. I think in your shoes, Entyvio isn't a bad plan, at the same time, when presented with similar options, I wish I had just gone for Remicade right off the bat since it has the highest likelihood of inducing remission. Entyvio is slower to show response and it's less effective. 40% vs. 65%. It's great that Entyvio has less side effects, but it also has lower response rate. Remicade is the least convenient with the long infusion time, but it can show results literally overnight. If you're really die-hard about getting off steroids, I would think that could be your fastest route off. Of course, you need to do what your GI recommends. I am sure she's very well-trained and she's looking out for your best interests.

Sometimes you have to try a biologic and fail to move to another. If that's the case, trying Humira/Simponi wouldn't be a terrible option and they are really easy.
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