So many options, which one to choose?- Update at the top!

Glad it went well. Of the above mentioned choices, which do you feel is best?

Notes:

1.) Imuran/6mp is going to taking about 3 months to kick in, during which you would be concurrently on pred.

2.) Humira is going to take about 6 weeks to kick in, during which you would be concurrently on pred. Humira is slightly cheaper on an ongoing basis then remicade is, thus insurance prefers it. Why? Humira pens are self-administered at home. Remicade is hospital-outpatient procedure with supervising nurse time, and that makes billing a bit more expensive. With humira, the insurance controls the specialty-pharmacy and the pricing more closely. Remicade, the hospital controls pricing.
Effectiveness between Humira and remicade is a crapshoot, some swear by one over the other, but never a scientific study saying which is better. Either is a safe bet.

3.) Regarding taking Imuran for antibody prevention, that's really not necessary for humira. It's an extra precaution you can take but it might not really be needed. The whole antibody thing started with remicade, an older medication and for it there's sense in it. Humira is newer and humanized (remicade is not) so it is less likely to happen.

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Moderator Ulcerative Colitis
John, 40, UC Proctosigmoiditis
Rx: Remicade @5mgs/kg/6wks; daily 75mgs 6MP, 4.8g generic-Lialda, and rowasa
Is it unpatriotic to wipe your bumm with George Washington bills if there's no tp in a stall and you're otherwise in dire-straights? I think George would understand...

I think my decision would depend on how long you've been on prednisone and how long you've had between flare ups. The fact that you're on a high dose of pred and still having trouble keeping weight on, to me, is a bit worrisome. I could eat a store empty on pred, and the way I looked was representative of that.

I'd probably be proactive and want to start something, option 1 in my opinion, will just cause you to lose time and end up back in a flare up - as it did last time you tried it. You never know though, we all want to hope we don't need to escalate medication, but for me, I tried to taper off so many times without luck, and I was on prednisone for so long... I don't see much positive about waiting around hoping. Actually I did finally get off without adding
meds but the "remission" lasted such a short time, it wasn't worth it.

If you've been on long courses of pred 2x in the past 2 years, and had a failure to taper off, and each course lasted months at a time, you probably need something stronger to maintain. Imuran/6mp could be a good option, but it takes long to work, and if you're underweight, you may not have time. I'd go for Humira probably. If you had done what your stepdad said in dec, you would already probably know whether 6mp would work for you.

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Moderator: UC
Currently: no meds 6/15 Step 1 J-pouch Surgery Complete 9/15 Step 2 Complete 11/15 Step 3 Complete
From Sickly to UC Free
Give a man a fish and he will eat for a day; teach a man to fish and he will eat for a lifetime; give a man religion and he will die praying for a fish

I think plan one is in the trash already. I’ve been on prednisone since 11/2, failed to drop below 30 once and went back to 40. This is my 3rd flare up since diagnosis in 2013, and although my disease has been scaled as mild on my most recent scope it was moderate on my 2016 one.
I don’t want to burn a bridge and jump straight to an anti TNf but I also just want off the blinking prednisone. I should add that my weight is low more because I am really small, not even 5 feet tall. My “normal” weight is between 95-102.
pounds depending on how much running I am doing. Usually higher the more I exercise. I am at 101 right now with all the prednisone fluid retention.
I just don’t want to revisit the horror movie of the toilet bowl anymore. I am over it. My disease is also only through my sigmoid by my rectum was a hot mess in December, my doctor looked shocked when he did a quick recto scope then. He told me “good luck” and sent me on my way with a scope in January and a higher dose of prednisone.

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43 yrs old diagnosed with proctosigmoiditis 6/13/13
meds- 4 Lialda (sfRowasa when needed)- supplements: probiotics (1 VSL3 cap, 1 culturelle and 1 reuteri) 1 gram krill Oil, 1TBSP p. seed powder, 2 g curcumin. Allegra for seasonal allergies as needed. Allergic to sulfites. Currently gluten/dairy free (except yogurt) and eating lots of RS.

iPoop said...


3.) Regarding taking Imuran for antibody prevention, that's really not necessary for humira. It's an extra precaution you can take but it might not really be needed. The whole antibody thing started with remicade, an older medication and for it there's sense in it. Humira is newer and humanized (remicade is not) so it is less likely to happen.

Where is this coming from? I've seen another poster recently say the same thing.

I thought this was hypothesized - and subsequently proven wrong - years ago, shortly after Humira first came out.

Humira can induce antibody formation just as Remicade can. Being a 'humanized' protein doesn't make it non-immunogenic.

I just got off the phone with my husband’s stepfather at UCSD, he says that actually 6pm/Imuran is still better with Humira as well. It helps prevent antibodies, makes the drug more effective, but it is more important with Remi.

His take was to hold where I am on the prednisone for now until biopsies come in from my scope. He said if there is inflammation visible in biopsies but not from the scope, start with just 6mp and save the humira as a backup. His concern is that my age would leave me with too few options since my disease has been relatively mild. I see his point, I just want this over and am impatient.
I haven’t had any bleeding since December 22, everything is pretty normal. I think I am more terrified to taper than anything else. The head game from this disease is brutal. I feel like I have PTSD.

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43 yrs old diagnosed with proctosigmoiditis 6/13/13
meds- 4 Lialda (sfRowasa when needed)- supplements: probiotics (1 VSL3 cap, 1 culturelle and 1 reuteri) 1 gram krill Oil, 1TBSP p. seed powder, 2 g curcumin. Allegra for seasonal allergies as needed. Allergic to sulfites. Currently gluten/dairy free (except yogurt) and eating lots of RS.

Re the antibodies discussion, I am at an academic hospital and they told me I can stop azathioprine (imuran) when I start entyvio because there is not the same risk of antibodies as with remicade. And the point is you are more immunosuppressed on the two drugs than if you just took one of them, so that is a risk which should not be ignored. Unfortunately my symptoms did not allow me to stop imuran, and this friday I will probably agree to switch from imuran to xeljanz (so I will be a bit of a guinea-pig doing xeljanz and entyvio concurrently, although if i get a strong remission from xeljanz I will stop entyvio).
I am 36. I have had UC for 4 years and at the moment it is only active in the left side, and only really bad in the rectum. xeljanz will be my last option before surgery. The only time age was relevant in my treatment plan was in trying to get me off prednisone - the hospital were very clear that i should NOT stay on it...and eventually we found out it gave me osteoporosis in my spine (you could have a dexa scan to check this, it's wise to do it after 3 months on prednisone, my previous hospital didn't bother and now I have to take another biologic designed to treat bone cancer, to reverse the osteoporosis...). Most important thing in my dr's view is my quality of life. I am on a part-time sick leave from my work because after 3 years of non-stop flaring I have fatigue and still spend every morning running to the toilet. Do I want to do this for the rest of my life? Not really...
When I have been in the hospital for my entyvio infusions, I met other patients much younger than me who have been on remicade for 4 years, 8 years, 10 years, with no symptoms and no problems. For two of them remicade was also their last option before surgery (because the other biologics had not been invented yet). You just never know until you try. You could be one of the lucky ones where it holds you in remission for 20 years. Even if it only works for a short time, there are now many other classes of biologics (as ipoop mentioned) that you can try after that, and there is so much research into ibd treatments I expect even more new options in the coming years. Also leaving an inflammation untreated for too long can allow it to fester into something more unpleasant, not least a higher risk of colon cancer (and I don't say this to scare you because the risk is probably small but it's something to think about).
Well sorry for the long post, those are just my thoughts...i wish you lots of luck in the next step forward! [as an aside not related much to this post, do they only use remicade in the US? In my country they try to put people on the biosimilars i.e. remsima or inflectra if possible, because they are much cheaper]

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DX pancolitis 2015
Last remission 2016
(Moderately severe) left-sided colitis since 2018
Have tried nearly all drugs and quack options available
Currently working with Entyvio, not sure it is working with me.

beave said...
But wasn't that debunked years ago when large scale data started coming in that showed similar rates of antibody formation for Remicade and Humira?

Not to my knowledge but I could be entirely wrong. If you can find the study and data then post it and I'll be glad to give it a read. The whole antibody thing seems to be a bit of a gray-area, where we kinda think we know what is going on but aren't always right. Some get antibodies while following the best practices. Some do not follow any best practices yet do not get antibodies.

Yesterday evening, I spent a lot more time than I should've crawling scholar.google to see if I could back my claim but unfortunately could not lol. I read one thing that said it was as effective at preventing antibodies to start a biologic while on pred, as to start a biologic while on immunomodulators, which I found interesting. Certainly, it seems, initial exposure to a biologic is a high period of risk for antibody formation. Having waning levels of a biologic (too low of a dose) seems to trigger antibody formation too. Mirrors viral infections for us though, that initial exposure to a virus is when our immune system aggressively tries to stop an invader, and when the virus is nearly defeated through other means (body temp rise, etc etc) our immune system aggressively tries to find antibodies in case we encounter that virus again or a similar variant thereof. And, of course, a biologic looks no different to our bodies than a virus does (like influenza or the common cold).

Post Edited (iPoop) : 1/17/2019 6:27:14 AM (GMT-7)

Lots of good advice here. I would only add that worry about any biologic (or all types of them) only giving a few years with nothing left but surgery - that my be overly pessimistic. In a few years there will be even more biologics, and possible more non-biologics (like SSI) or even probiotic/FMT options. Then there might be stem cell therapies.

SO roll the dice, get a few years or longer. Check options again in the future if you need to.

good luck

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11/08: ischemic colitis and scope perf colon. 12cm colon/ileocecal resected. IV antib:sepsis.
01/10: Dx: Mod. UC pancolitis. Rx: Lialda 3x.
02/11: Major flare w/antib:sinus. Rx: 40mg Pred taper. 6mp.
07/11: Histol remiss rt/trans; worse sigmoid. Rx: Rowasa & hydrocort
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Curr: 1-2 soft-formed stool, no urgency: Lialda 2x, NO PRED, probiotics, Vit-D/C

Yup, I feel like I know what I want to do, but I also know I shouldn’t make a decision without full information. So waiting for biopsies which I was told should be in today, tomorrow, or Monday at the latest. But as soon as we get them, I think the choice will be clear. If all of my colon comes back looking good, I may just chance the taper. If the biopsies come back as pancolitis, Humira here I come. If they come back good everywhere but rectum and sigmoid I am going to do Imuran/6 mp.

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43 yrs old diagnosed with proctosigmoiditis 6/13/13
meds- 4 Lialda (sfRowasa when needed)- supplements: probiotics (1 VSL3 cap, 1 culturelle and 1 reuteri) 1 gram krill Oil, 1TBSP p. seed powder, 2 g curcumin. Allegra for seasonal allergies as needed. Allergic to sulfites. Currently gluten/dairy free (except yogurt) and eating lots of RS.

I think that's a good option and I wish you luck! I wanted to keep the biologics in my pocket, and i was a non-responder anyway, so holding out didn't do much for me. I guess it gave me hope, and it might have bought me some time, but in retrospect, it probably wasn't worth it since I prefer life after surgery. I feel a lot less stressed knowing I am able to do what I want when I want, without the implications of UC and treatment being a burden on my daily existence. It's great if you can get in remission and stay there, but fighting for it all the time, is a big loss of your time.

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Moderator: UC
Currently: no meds 6/15 Step 1 J-pouch Surgery Complete 9/15 Step 2 Complete 11/15 Step 3 Complete
From Sickly to UC Free
Give a man a fish and he will eat for a day; teach a man to fish and he will eat for a lifetime; give a man religion and he will die praying for a fish

Good luck, here's hoping you've got the right decision and will re-enter a remission asap! It's always a crapshoot, and what we always do what we feel "from the gut" is right. And you have a backup plan if more meds becomes necessary. There's 6-8 weeks between popping an aza/imuran/6mp pill and it having a result. The 3-month figure is often cited, as they intentionally start you at a very low dose, then bump that dosage up after you get a couple good blood test results. As such, it is the highest dose you gotta wait 6-8 weeks for the true affect.

Expect initial frequent blood draws (weekly or every other week). Usually a standard Complete Blood Cell Count (CBC) and Hepatic/liver function panel (LFT). When you first arrive at the lab, tell them you have a standing-order for repeat blood work and to code it that way within their system. Standing orders simplify the visit, you don't need a paper in-hand with lab work orders every time you visit. Rather, you are already in the system and they can very quickly print labels and get you seated for the draw. After a few good blood results, they might go to monthly, then to ever other month, and it stays at every three months for the duration you are on that medication.

Did they test you for the TPMT enzyme before starting 6mp/aza/imuran? It's not always done, but a good one to see if you're a poor candidate for the drug and will likely have a bad reaction. https://www.labcorp.com/test-menu/35601/thiopurine-methyltransferase-tpmt-enzyme-activity-erythrocytes

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Moderator Ulcerative Colitis
John, 40, UC Proctosigmoiditis
Rx: Remicade @5mgs/kg/6wks; daily 75mgs 6MP, 4.8g generic-Lialda, and rowasa
Is it unpatriotic to wipe your bumm with George Washington bills if there's no tp in a stall and you're otherwise in dire-straights? I think George would understand...

Thanks iPoop! I had all the blood work done in December when I had to go back up to 40 mg of pred, TPMT, Quantiferon to check for TB, and Hepatitis screenings. All came back good to go.

I picked up the Imuran today (50 mg) and took it with my lunch, I know it will be a long haul with the prednisone. I am on a calcium supplement called “bone up” that my previous doctor suggested. I take it 3 times a day plus a multivitamin with more calcium and vitamin d. My first round of blood work is scheduled for 10 days in to the Imuran so my doctor will get it before the weekend and we can go over it and change plans if things look funky. If it looks good, then I believe he said we up the dose (started at 50 but I think the ideal dose for my weight is 71 mg, we would have to do 75, though). The we test weekly for two weeks. If all looks good we go 2 weeks after that, the monthly for a while. It is a lot of extra work but if it works in the end, then hooray. If not, I am taking it if I need it to go with a biologic.

Pred plan is to slowly ditch the colocort (half an enema nightly for a week and a whole sfRowasa nightly, then less colocort over the next two weeks) while holding oral pred the same. Then drop 2.5 mg every 7-10 days unless I see bleeding. If that comes back we make “adjustments” at that time. Still only going 1-2 times a day, no bleeding since December when it went from off to full on, book it to the bathroom to pee blood and pss big clots out my colon 3-5 times a day. This was all in my rectum apparently, just really badly inflamed.

So far this doctor has seen me for one office visit and sent me 4 messages via the patient portal, I am so happy with how he is communicating.

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43 yrs old diagnosed with proctosigmoiditis 6/13/13
meds- 4 Lialda (sfRowasa when needed)- supplements: probiotics (1 VSL3 cap, 1 culturelle and 1 reuteri) 1 gram krill Oil, 1TBSP p. seed powder, 2 g curcumin. Allegra for seasonal allergies as needed. Allergic to sulfites. Currently gluten/dairy free (except yogurt) and eating lots of RS.