Remicade dose / interval change likely?

I am not understanding your dosing. IV infusions usually start at 5 mg per kg of body weight and max out at 10 mg per kg of body weight. Take your weight in kg and multiply by 5 or 10 to see what dose you are on that would be close to the numbers you listed.

It might be that you finally turned the corner and your calprotectin could be close to normal now since your last one was 3 months ago. You might want to get it tested again to check. If it's working only you can decide if you want to risk rocking the boat by changing anything. Usually once you get to a level that works for you you just stay with that dose.

I have been on Remicade for approximately 10.years. when I am flaring we have increased the dosage to 10 every 4 weeks. When I improve we lengthen the time frame by 1 or 2 weeks at a time for a couple of infusions and check all My levels. Currently I've moved to 7.5 every 6 weeks now. It's taken me since 2022 to go from 10 at 4 weeks. I am on dual therapy with methotrexate. I've also been on Remicade every 2 weeks, then every 3 weeks and then every 4 weeks. It's important to know that insurance will.not pay for it every 2 weeks or 3 weeks (except for the 2 week loading doses) so it's an out of pocket expense and the GI and infusion place may have you sign waivers regarding liabilities...although they may not do that anymore....or at all...unless it's a special case. (Meaning you are very very ill)

Once I became somewhat "stable" I have not been under the every 4 week dosing period, but we have had to move the time frame and dosage around. My best trough level is at a minimum of 13 with 0 antibodies or no more than 3. Antibodies above 5 throw me into a flare.

So lowering your dosage is possible but it must be done after you are stable and done with extreme care with labs and scopes.

Everyone is different. Symptoms do not necessarily indicate internal damage or amount of healing that's occurred. So, personally, I would not rush anything.

Clo

Post Edited (clo2014) : 5/24/2024 2:15:43 AM (GMT-8)

Thanks, very interesting and encouraging. I’m over-excited with suddenly feeling well, but I’m actually quite cautious by nature, so no impulsive moves are likely. It certainly remains to be seen if I’m even stable or just enjoying a little break.

I’m more curious now about the higher dose I’m on, given the ranges you both mentioned with many more years of treatment. I did find a study or paper back in the fall discussing use of a high dose whe it was first started, but I was too tired and sick to pay proper attention - hopefully I’ve filed that somewhere that I can find again. I don’t get great answers from my doc usually.

I’m confused about antibodies detection - when I ask, I’m told that there's one measurement only, which shows the drug level, and which if positive means no antibodies are present. I’m not sure if I’m asking the wrong question or if there are different ways of testing and this is just how it’s tested here. It seems like an important part of the information that I’m missing though. I’ll try again when I see the doctor next week.

Coverage is being coordinated through an inscrutable process by the drug company and provincial and private insurances. It’s hard to get a clear answer, but I imagine eventually they'll want to stop that and I’ll be switched to the fully covered biosimilar. (That's not been mentioned yet though).

I’m motivated by your responses to put together a good list of questions for the doc appointment next week and will let you know what comes from it.

Thanks!

I’m not on remicade. But my opinion is to not rock the boat until it’s been stable for quite awhile. I’m thinking at least 6 months. Personally I’d go even longer than that. It’s nice to have a goal, and I understand going in every 4 weeks for an infusion is a drain in itself. But I’ve seen too many people post here that they were doing great so decided to take a medication break and disaster eventually struck. I’m VERY cautious by nature though. 😀

Thanks everyone, I appreciate the advice and will heed it and go slow. I really don’t want to risk losing the way I feel now.
OldMike, very true! I didn’t enjoy being 92 lbs I must say, I felt very vulnerable and weak. But I’m a small person (in a family of small people) and 98 lbs actually gets me a normal BMI (though is not enough for bone building). I'm exercising again now which certainly helps - I’ll be happy to be an active 110-pounder again maybe by fall.
Doctor visit tomorrow morning.

I stayed I mesalamine for a long time after I was in remission on Remicade. I think I didn't stop completely until last year. I very slowly weaned off -- dropped 1 pill a month until I stopped (I had been taking 6 pills/day). Took me about 6 months to wean off completely. Doc said I could just stop, but I am super cautious so went slow. I was too afraid that I could rock the boat.

Midge, the "status quo for 3 months and then re-evaluate" would be my IBD gastro's advice to patients feeling better after long flare. Surprising, though, that yours forgot about the Mezavant! Sometimes they don't record our medical history as accurately as it should be saved/updated in our chart, whether paper or online. I just noticed the mention of anti-spasm drug Rx in the 1st paragraph of my GI history recently added online-- so I protested to the NP that I hadn't needed that type of med since my pre-2010 years! The NP then replied that gastro had probably put it into recent history as a reminder of my past need. (I would prefer chronological mention, not reminders.) / Old Hat (40+ yrs with left-sided UC; in remission taking Colazal)

Thanks for all the responses. Hmm I’m glad I mentioned that about the mesalazine. I did try to wean from 4 to 3 a while back and thought it caused me trouble. At that time I was still feeling poorly all the time though so, as you all know, hard to tell what’s causing what. I ended up going back to 4 and staying there. Based on the comments here p I’ll take it very slow on the withdrawal - one down a month seems like a good suggestion, much slower than I tried before - and if I seem to do badly without it I'll just keep going with it. Certainly agree that doctors can be pretty cavalier about making changes. Thanks for all your input!