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Ulcerative Colitis
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Posted 6/20/2022 5:03 PM (GMT 0)
I had a colonoscopy and found moderate active colitis in left colon. Don't have detail pathology yet. But doctor has asked to schedule appointment to discuss medication option.
I do see blood in stool. But BM are solid and 1 or 2/day. What should be my options? Little worried going on steroid or next step.
Currently, I am on 75 mg 6mp and 4 Mesalamine DR/day. I have been trying mesalamine suppository for couple of months and don't see improvement so colitis must be higher.

Thank you
Posted 6/20/2022 5:19 PM (GMT 0)
A follow up visit to discuss options is pretty common.

You could try upping your dose of 6-mp for a few months, if you've been on it long enough then the upped dose will react somewhat quickly. A higher dose can be used as a treatment and then you can revert to a lower dose for a maintenance dose once your flare gets into remission.

There are steroid enemas and Budesonide which are less systemic than prednisone.

This is a personal thing - I'd prefer to have a biological medication over going with steroid. I had a hip replacement due to long term steroid use to treat my UC.
Posted 6/20/2022 5:32 PM (GMT 0)
I'm with keith, I also hate steroids because they gave me severe osteoporosis in my mid 30s. Have been on a couple of biologics, they were much more effective than 6mp/mesalazine type drugs and I had zero issues with side effects (I would even argue that biologics are safer than 6mp). Not sure where you're based but where i live the only reason they try 6mp before biologics is because it is cheaper. Not because it is safer.
Posted 6/20/2022 7:30 PM (GMT 0)
If your doctor is pushing prednisone then make them justify it. Have them go over the pros and cons of steroids, especially the side effects. Ultimately the decision is up to you.

I have an understanding with my GI that there will be no more steroids for me. He said that he wouldn't prescribe any additional steroids because I have a new hip from steroid damage.
Posted 6/20/2022 8:41 PM (GMT 0)
You may get more benefit from using enemas instead of suppositories as the enema can reach further so I would ask about that first.

Since your symptoms are mild you should be able to avoid prednisone. That's generally only used as a rescue med when you are in a severe flare.

6MP is dosed by body wt -- usually 1.5mg/kg of body weight so your dosage of 75 mg means you shouldn't weigh more than about 50kg (110 pounds). If you weigh more than that maybe you need an increase dose of 6MP to get you back in therapeutic range.

Your next step with meds would be a biologic. There are several options. Docs usually start with Humira, but that seems to work better for Crohn's than UC in my opinion. If you have a choice I would suggest Remicade or Entyvio. Entyvio seems to be the "safest" since it was specifically developed for UC and if it works you will love it.
Posted 6/21/2022 2:33 AM (GMT 0)

CCinPA said...

6MP is dosed by body wt -- usually 1.5mg/kg of body weight so your dosage of 75 mg means you shouldn't weigh more than about 50kg (110 pounds). If you weigh more than that maybe you need an increase dose of 6MP to get you back in therapeutic range.

I think it starts that way and then they do blood tests as you progress. I’m about 190 lbs and I couldn’t tolerate more than 25 mgs per day because of the way my body metabolizes 6-mp.
Posted 6/21/2022 5:55 AM (GMT 0)
I also metabolize azathioprine funny. We tried a dose increase from 100 to 150mg but when my blood enzymes (6TGN and 6MMP) came back unfavourable I was switched to 50mg azathioprine plus allopurinol which changes the way it is metabolized.
Posted 6/21/2022 7:43 AM (GMT 0)

CCinPA said...
You may get more benefit from using enemas instead of suppositories as the enema can reach further so I would ask about that first.

Since your symptoms are mild you should be able to avoid prednisone. That's generally only used as a rescue med when you are in a severe flare.

6MP is dosed by body wt -- usually 1.5mg/kg of body weight so your dosage of 75 mg means you shouldn't weigh more than about 50kg (110 pounds). If you weigh more than that maybe you need an increase dose of 6MP to get you back in therapeutic range.

Your next step with meds would be a biologic. There are several options. Docs usually start with Humira, but that seems to work better for Crohn's than UC in my opinion. If you have a choice I would suggest Remicade or Entyvio. Entyvio seems to be the "safest" since it was specifically developed for UC and if it works you will love it.


Do you use enemas on entyvio?
Posted 6/21/2022 5:31 PM (GMT 0)

Theanxiousaries said...
Do you use enemas on entyvio?

Patients do if they are flaring. It's not needed for maintenance if you are in remission and on Entyvio. If you need enemas for symptoms relief then you probably aren't in remission.
Posted 6/21/2022 9:38 PM (GMT 0)

Theanxiousaries said...
Do you use enemas on entyvio?

Yes ... I used them when I first started both Entyvio & Remicade until I was in remission and then I backed off slowly to make sure I didn't back slide. No problems at all to throw every tool you have -- oral & rectal -- along with a biologic to get you where you need to be. It was a few months ago that I stopped oral mesalamine, Doc told me I could just stop but I went slowly. I wanted to make sure I remained stable. I don't want to rock the boat. Maybe I have PTSD from that last flare that makes me so cautious. I loved Entyvio ... was really depressed when it stopped working. I hope it works for you.
Posted 6/21/2022 10:52 PM (GMT 0)
Dear Pam,

I had very similar symptoms to yours for my UC for a number of years. Then I got to the point where mesalamine (both rectal and oral), although helping my UC, was not putting me in remission. I was deadly afraid of going into biologics like Remicade or Humira. I tried 6 MP but had terrible nausea side effects that I just could not tolerate. Long story short, I finally went on Humira: within 3 months I was in remission, and it lasted for almost 5 years! The biologics are very, very safe medications. When you look at the data it's amazing how safe they are. I personally did not have any major infections while on Humira. So, you may want to give a biologic a try (it could be Remicade, Humira, Entyvio, etc.). If you go with Remicade or Humira, you have the advantage of already being on a 6MP, which protects you from developing antibodies to the biologic medicine. I would guess that if you add a biologic you will quickly get into remission.

Hope this is helpful. Ask any more questions if you need to.
Posted 6/22/2022 3:13 PM (GMT 0)
I would ask to try mesalamine enemas. The suppositories never did anything for me. Your symptoms are so mild.

tonito has a good other perspective.
Posted 6/22/2022 3:27 PM (GMT 0)
Thank you all for your advice.

I am on 6mp 75mg/day. My liver enzymes are on border and sometimes go high too. So increasing dose may not be option. I have been on 6mp for almost 9 years and fully in remission. In October 2021, after memmogram, they found lymph node and asked me to come back after 8 weeks. I was really scared and try to reduce 6 mp little bit on my own. After 8 weeks, memogram was fine but started seeing blood that never went away even after going back on full dose.

Definitely steroid is off. I was on it almost for year in 2013 and see issues with bone. May be biologic is the way to go.And may be entyvio??

I have to meet GI over this so I will keep you all updated on how it goes.Thanks
Posted 6/22/2022 10:08 PM (GMT 0)
Pam,

If you are concerned with 6MP and liver problems and cancer (and this medication has caused cancer to some: I know of one excellent doctor and researcher, Marla Dubinsky at Mt. Sinai in NY, who simply does not prescribe 6MP because of the cancer risk), then you might want to drop that medication. If you go to a biologic like Entyvio (likely the safest of the bunch), then you won't need 6MP, because I don't think Entyvio gets antibodies. So yes, I like your idea of Entyvio.

Best.
Posted 6/22/2022 10:42 PM (GMT 0)
You can get antibodies to entyvio but it's less common than with the tnf-inhibitors.
Posted 6/23/2022 1:43 PM (GMT 0)
Entyvio sounds like a good choice. I hope it helps you get back into a long remission.
Posted 6/23/2022 1:59 PM (GMT 0)
I think Remicade works faster (if it works) than Entyvio. I’ve never taken Entyvio so I have no direct experience with it.
Posted 6/23/2022 4:23 PM (GMT 0)
I haven't met GI yet but like to be ready to discuss when I see him.
So how do they start biologics specially entyvio? Will he keep me on 6mp and then start on biologic? I am thinking what if biologic doesn't work for me. I have done well so far on 6mp and if he stops and I flare worse than now.
Posted 6/23/2022 5:49 PM (GMT 0)
Depends on the doctor but in my case they kept me on azathioprine on both infliximab and entyvio...with the idea to wean me off it once I'm in remission. If you're using it to prevent antibodies you only need a low dose anyway.
Since neither of those biologics put me in a satisfactory remission I then switched to xeljanz and stopped azathioprine immediately. I must say I was really happy the day I stopped taking it. And yes i had a rebound flare from stopping it but as soon as xeljanz kicked in it was fine.
Posted 6/25/2022 6:59 PM (GMT 0)
Very happily in a 5 year remission (so far) on entyvio. Infusions are easy — only 30 minutes every 8 weeks and absolutely no side effects. I recall being in symptomatic remission by month 4 but with lots of improvements in symptoms before that. I was on prednisone when I started it but started a taper in the beginning and was successful in getting off it for the first time in a year.
Posted 6/26/2022 10:20 AM (GMT 0)
Remicade worked GREAT for me for well over 20 years. Developed antibodies and switched to Humira. Humira did nothing and was switched to Entyvio. That seems to work well and have had no side effects. I am in a minor flare right now, but doc says it's due to an infection. Biologics are definitely the best option....in my useless opinion. As some of the others have said, enemas usually work much better than suppositories....none of it is 'pleasant', but we do what we must to stay as active as possible and try to enjoy a bit of every short day. Bless you and feel good soon.
Posted 6/29/2022 6:12 PM (GMT 0)
Thank you all. I will update you all once I meet GI(No appointment till September).
Posted 6/29/2022 7:02 PM (GMT 0)
Did you ask to be notified if there are an openings from cancellations?
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