Remicade- Almost but not Quite

I'm assuming the 10mg/kg every 6 weeks is limited by your insurance? Because my doctor has assured me that she doses people up to 15mg/kg every 4 weeks although I would probably have to fight to the grave to get insurance to cover it. As for adding an immunomodulator, it will not only potentially directly help treat your UC but it will also help the remicade work better and allow you to maintain higher infliximab trough levels. I would give it a shot before you switch biologics/drugs as whatever you switch to may not work at all. Bridgeing to another drug would be hard if you are refractory to steroids as entyvio takes a while to work, if it does at all, so you would probably have to try bridging to it with tacrolimus. The other option would be to just switch to xeljanz.

Post Edited (Curious Crapper) : 1/14/2019 7:20:10 PM (GMT-7)

It is fairly common for people to be dosed at 10mg/kg every 4 weeks. I didn't have to fight my insurance at all to get the 4 week dosing. If your insurance denies it, the doc should be able to appeal it. However, any dosing above that would be pretty difficult to get approved.

That said, if you flare after 2 weeks, it is not likely that switching to every 4 weeks will get you into a solid remission.

If adding an immunomodulator (6-MP can take 3-6 months to work) and upping to 4 weeks doesn't work, I'd move on to Simponi. Entyvio is also an option but given that you have severe pancolitis, I'd be worried that you could lose your colon before the Entyvio takes full effect.

Depending on how liberal your insurance is, Xeljanz (a JAK inhibitor rather than a biologic) might also be an option. The advantage of Xeljanz would be that it only takes 8-10 weeks to tell if it will work for you.

Is remicade the only UC med you are on? Sometimes we need multiple meds simultaneously to conquer a flare.

Have you had a remicade/infliximab concentration and antibody test to see how your levels are? Typically run 24-hours prior to your nest infusion, to see what your true minimum concentration is.

https://www.labcorp.com/test-menu/29496/infliximab-concentration-and-anti-infliximab-antibody

The general max for remicade is 10mgs per kilogram every 4-weeks. I would ask about being simultaneously on remicade and your choice of thiopurine (azathioprine/imuran or mercaptopurine/6MP). Might just be the helping hand you need with both meds to get into a remission. Thiopurines take about 3 months to work, so it is by no means a fast-pass.

Being steroid-refractory (non-responsive to steroids) makes it more difficult. There's always cyclosporine/tacrolimus that can be used in the place of steroids.

One thing to remember is that it takes a lot more medications to initially achieve a remission than it does to sustain it. So, right now focus on achieving a remission, and once in a sustained remission then you can start tapering meds to find out what meds and dosages are truly needed. So, keeping a remission might mean only remicade without the thiopurines.

Journal of Crohn's and Colitis said...
5.2.3. Azathioprine (AZA) and 6-mercaptopurine (6-MP)

AZA and its metabolite 6-MP are purine analogues which interfere with the synthesis of adenine and guanine ribonucleotides. AZA crosses the placenta and its metabolites have been determined in fetal red blood cells.153 In a recent study evaluating prospectively the pharmacokinetics of thiopurines during 30 pregnancies, a metabolic shift towards higher 6-methylmercaptopurine (6-MMP) production was shown in mothers but without clinically relevant toxicity. In cord blood, thiopurines’ active metabolites (6-TG) were detected in levels reaching on average 50% of maternal levels.104 In this study, 60%of infants had anemia and, therefore, immediate postnatal blood count assessment of children exposed to thiopurines in utero might be considered. Fetal exposure to AZA and 6-MP has been reported in several hundreds of cases.99,100,136,154 The adverse pregnancy outcomes described in these studies were an increased rate of spontaneous miscarriage, preterm delivery and low birthweight,99,155 which could have been caused by the underlying disease rather than by the use ofthiopurines.156 More recent controlled studies102,103,106,111 and a metaanalysis157 reported no increased risk for adverse pregnancy outcome in IBD patients treated during pregnancy with thiopurines, compared with pregnancy outcomes of IBD patients without this treatment. An association with preterm birth, but no congenital malformations, and low birthweight was shown in one recent meta-analysis.98 A few cases of immunologic and hematologic abnormalities and chromosomal aberrations in newborns and infants, probably caused by immunosuppression, have been described.100 However, a prospective study following 30 children exposed to thiopurines in utero revealed neither developmental nor immunologic abnormalities in these children during a median follow-up of 3.8 years.107

It has been reported that 6-T6 passes through the placenta,158and in the absence of further safety data it should not be used during pregnancy.

Both of yalls input makes me feel a lot better. The brief information I read about 6mp and the bottle itself indicate that it’s dangerous during pregnancy, so I assumed so.

I’m happy to know that I may not necessarily need it one I’ve maintained remission.

I hope this is my key! As you all understand, I’m sick and tired of being sick and tired all the time!

Remember that the levels we take these immunomodulators at are much lower than the patients who use them for organ transplants. Some of the side effects listed are due to the dosing levels.

I've been flaring lightly on vacations. Really depends what you plan to do for a trip.

Certainly cruise ships have bathrooms everywhere.

If you go to something sandals/dreams self-encapsulated resorts in the greater Caribbean area then you basically stay on the grounds all day, with access to food, pools, the ocean and of course many bathrooms. Done a few of those sandals/dreams things, being a northerner sometimes you gotta escape the winter and fly south to thaw out and read a book on a beach for a while lol. No problem with bathrooms, while there.

They have excursions on cruises/resorts where you can go on a trip for a few hours. Did those. One we had a long wait for another van to meet us, and I got to explain to a guy who knew only Spanish (and I know only English) that I had to use the bathroom. He said to go into an abandoned house we were parked next to and go. That was fun, crapping inside some vacant house in Costa Rica lol, but at least I was out of eye-sight and didn't poop myself.

If you're outdoorsy, then there's always camping, hiking, kayaking/canoeing, nature watching. You're surrounded by facilitrees, and can just poop in the woods (maybe like a concerned squirrel chattering above you in the trees). Don't necessarily have to be expensive vacations. In fact, I'm often happiest in the mountains with a backpack and in the serenity of nature, far from a cellphone signal, roads, or any signs of mankind, etc etc.