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Starting Biologics in remission ?

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Ulcerative Colitis
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Tblock1985
Regular Member
Joined : Jun 2017
Posts : 169
Posted 11/11/2019 1:12 AM (GMT -7)
Hey guys, I’m seeing my Gastro Doctor tomorrow for a general check up and discussion about Biologics. For anyone that doesn’t know, I just come out of a major C-Diff infection which put me in hospital. I also had a very slight UC flare underneath to also combat, which thankfully I have now got rid of aswell as the C-Diff after being so unwell for 2 months. I been in remission roughly 3 weeks now. Now, the reason why we are going to be discussing the Biologics is I have been getting roughly 2 flares a year and whilst the Pred has always got me in remission, my Gastro team are not keen on giving me 2 rounds of pred in a year period all the time. They are happy one course of Pred a year, but anything more they feel another route is needed. I have never been on Biologics but here it’s very successful at getting long term remission and that’s what I’m aiming for, especially with my wedding next year in Italy. I don’t want to be flaring twice a year. Would it be worth going straight on the Biologics even though I’m in remission? Or is it better to wait until a flare appears, then go on it? Obviously I’ll discuss with my Dr, but would like opinions to. I’m currently on 150ML Azathioprine a day and I also take mesalazine.
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Sara14
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Joined : Mar 2007
Posts : 7223
Posted 11/11/2019 6:48 AM (GMT -7)
I think it's really just up to you. My doctor agrees with your doctor's line of thinking regarding pred doses per year though. Biologics haven't helped me so far (other than possibly for 2 months), but I'm hoping they still do.
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iPoop
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Joined : Aug 2012
Posts : 16389
Posted 11/11/2019 7:04 AM (GMT -7)
If you are not well-managed on azathiopurine and mesalazine, then I do think starting a biologic to make your well-managed isn't a bad idea. The one thing that would be hard as you have no symptoms now, is how do I know if starting remicade/humira is actually doing anything at all (a point I would bring up with your doctor)?

You did not mention your dosages or weight, so just a quick checkup on those:

What's your weight in kilograms? Are you about 75-kgs? I weight 165-pounds or 75-kilograms, Azathiopurine is dosed at 2.0 to 2.5 mgs per kilogram. So, my dosage of aza would be 150-mgs a day.

What's your dosage of mesalazine? It really depends on formulation, but you should be on 4,000-4,800 mgs orally per day. There's some variations based on brand (like pentasa granules/satchels are okay at 3,000-mgs a day). Have you considered using mesalazine retention-enemas at 4,000-mgs a day as a maintenance treatment?
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Tblock1985
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Joined : Jun 2017
Posts : 169
Posted 11/11/2019 7:42 AM (GMT -7)
Ipoop, well obviously being in hospital I did lose a lot of weight so I’m slowly building it back up since remission. I’m currently 65 kg , but my healthy normal weight is 70 kg. I weighed even less in hospital 4 weeks ago sad I have had a recent blood test and all come back healthy and postive with the Aza I’m currently on. Messlazine I’m on 1,600 twice a day so 3,200MG a day. My medication isn’t to drastic right now in remission
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Tblock1985
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Joined : Jun 2017
Posts : 169
Posted 11/11/2019 7:43 AM (GMT -7)
Oh and I take nightly pred enemas to for maintaining remission. Will slowly come off them in a few months thigh like I usually do when in remission
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Tblock1985
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Joined : Jun 2017
Posts : 169
Posted 11/11/2019 7:48 AM (GMT -7)
I was in remission once for 4.5 years so I know I’m capable of long term remission. But I do think I really need to consider the Biologics route as flaring twice a year is not what I want.
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iPoop
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Posts : 16389
Posted 11/11/2019 8:19 AM (GMT -7)
Aza dose is good then, mesalazine might be a little low (but might be fine depending what brand). Steroids have a cumulative affect on us, I have osteopenia (the lesser cousin of osteoporosis) due to being on pred 1.5-years-cumulatively. The rectal route steroids are, of course, safer than pred but still if you're talking over many years and taking steroids twice a year, then that's not a very good place to be in.

Certainly a much harder choice to go on biologics when overall feeling well. If you're struggling and flaring badly then it is always a much easier choice.
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Tblock1985
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Joined : Jun 2017
Posts : 169
Posted 11/11/2019 8:34 AM (GMT -7)
Yeh exactly that’s my point. Whilst I’m feeling great now, I really don’t want to get to next year and start flaring just before my wedding. I’ll discuss with my Dr tomorrow, cheers guys
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Sara14
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Joined : Mar 2007
Posts : 7223
Posted 11/11/2019 10:53 AM (GMT -7)
Yeah, tough decision since you won't know if they're doing anything. Good luck!
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Tblock1985
Regular Member
Joined : Jun 2017
Posts : 169
Posted 11/13/2019 1:45 AM (GMT -7)
Hey guys, had a good chat with my doctor and I explained to him how well I’m doing now, but how recently I have been flaring twice a year. He wants me to go on the Biologics from Jan, in preparation for my wedding in May so we can try and achieve longer term remission. Only issue is I got to have a colonoscopy before sad not to keen as I’m doing well right now, but I am due for one and I have to admit, I been avoiding it as best as I could. I know it’s important for the obvious reason and he wants to check the bowls before he starts me on Biologics to.
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Tblock1985
Regular Member
Joined : Jun 2017
Posts : 169
Posted 11/13/2019 4:19 AM (GMT -7)
Also another question. Is it safe to take both Azathioprine and Remicade? Obviously I’m on AZA now and have been for years with no issues. Will they take me off the Aza to put me on the Biologics treatment?
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Sara14
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Joined : Mar 2007
Posts : 7223
Posted 11/13/2019 4:24 AM (GMT -7)
Sounds like a good plan. My doctor also wants me to get a scope as soon as I start doing better, which also concerns me, because if I ever get totally better, I don't really want to irritate things with a scope, but I get why they want to scope us.

They will likely keep you on the Aza because it can help prevent you from forming antibodies to the Remicade. Ask your doctor to confirm this is his plan. Your risk for cancer (lymphoma, melanoma) is slightly increased being on both, but it's still a low risk and you've already been on the Aza.
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Tblock1985
Regular Member
Joined : Jun 2017
Posts : 169
Posted 11/13/2019 4:45 AM (GMT -7)
Thanks Sara. Yeh I’m a little concerned messing with my bowl whilst I’m doing so well but my Dr reassured me there is no evidence whatsoever that a colonoscopy causes a flare up and reassured me it will be fine, but said it’s important I get the scope as I have had the disease 8 years now and my only scope was when I was diagnosed.
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Sara14
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Joined : Mar 2007
Posts : 7223
Posted 11/13/2019 4:47 AM (GMT -7)
Oh, yeah, it's definitely time for you to get one then.
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straydog
Forum Moderator
Joined : Feb 2003
Posts : 18981
Posted 11/13/2019 7:12 AM (GMT -7)
TBlock, my gi puts his patients on Imuran with Remicade & Humira, alot of them do this. Relying on pred only with flare ups is not good on a long term basis. It's better to start something now rather than waiting for the bottom to fall out.

My dr says the same as yours, the prep does not cause a flare, if there is inflammation present it can aggravate things. And the prep can make us feel funky for up to a week. You are long overdue for a scope.

Take care.
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Tblock1985
Regular Member
Joined : Jun 2017
Posts : 169
Posted 11/13/2019 8:27 AM (GMT -7)
Thanks Straydog
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iPoop
Forum Moderator
Joined : Aug 2012
Posts : 16389
Posted 11/13/2019 9:06 AM (GMT -7)
Yeah super common combination to take thiopurines (azathiopurine/imuran/6mp) and biologics simultaneously. I'm on 6mp and remicade simultaneously.
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naturalcurl
Regular Member
Joined : Nov 2010
Posts : 254
Posted 11/13/2019 7:27 PM (GMT -7)
Good timing Tblock. Me too. The infusion center left a message to start Entyvio, my first biologic, but I feel better at the moment. l will stop the 5mg of Prednisone, use Rowasa/Canasa less frequently and see what happens. It has always been a sure thing that symptoms return. There is a one in 163,000,000 of winning the MegaMillions jackpot but that's greater than zero, right?
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FlowersGal
Veteran Member
Joined : Feb 2017
Posts : 1414
Posted 11/14/2019 9:23 AM (GMT -7)
Just remember entyvio is slow acting so you might want to stay on your rectals for 2-3 months!

Good luck! I’ve been in remission for over 2 years on entyvio. No side effects or problems.
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Tblock1985
Regular Member
Joined : Jun 2017
Posts : 169
Posted 11/14/2019 3:57 PM (GMT -7)
Excellent cheers guys
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