Remicade....one last chance?!

Hi all,

I've been debating whether to get my 4th dose of Remicade in a month and would like opinions.

I tried Humira two months July/August - did not do much for me at all, at some points I felt like I had decreased urgency, but not all the time, bowel movements still bad.

Remicade, I started in September and finished the 3 loading doses by end of October. I would say the second dose did the "most" for me but it was really not any better than the Humira - just some decreased urgency but it still occurred. Just before the 3rd dose I had constant abdominal pain (unusual for me) and bloating (more than usual) for a few days. I also crapped myself 3 times during this 5 day period, which had never happened to me before (other than close calls or a few little leaks -- this was full on mess). Doc had said symptoms could possibly be caused by the drug but to take my 3rd dose and see how it went. 10 days after the 3rd, I had 3 days where I again felt decreased urgency, but after that it was just downhill again. I had another 3 accidents, one a week (been 6 days now...hoping I'm not due again!!), it almost seems that I am worse on the Remicade than during this whole 6 month flare, and the 3rd definitely is not helping any more than the 2nd (very minimally) did. I also noticed my hair starting to fall out very quickly the past week or two, and I was put on prednisone recently (40mg decreasing 5mg/wk) to try to "push through" the 4th Remicade working.

I just don't know if I'm willing to try it at this point, I could possibly try Cimzia after as well and I was going to get a surgical referral for consult. A few weeks ago I was ready to say F it, just cut it out of me, but I am also very interested in doing more with supplements and a naturopath, and I will have easier access to such care soon as I'm moving to a much larger area. I am just getting very sick of putting all these chemicals in me over so many months that have had no effect, and possibly made me worse. The last week I've been getting by pretty well with just one Imodium per day when I first get up - I used it for a weekend work road trip (5 of em), but it doesn't seem to matter whether I take 1, 2, 4, - just lasts about 12 hours and I don't have to go much at all. I didn't use the Imodium for a few days last week, until I had the last accident - then I used it two days in a row, skipped the weekend, and have used it these last couple days. It definitely has helped but I know that isn't a long-term solution, however I'd prefer an Imodium a day to get by over yet another Remicade (or trying Cimzia) that don't seem to help at all. And I'd like to get off the Pred (continuing taper down) if I'm not even going to bother with the Remicade.

At this point I will probably be in the midst of moving when I am supposed to get the Remicade, so that adds another complication. Today, the Imodium has worked really well, doesn't seem to have "worn off" and caused a flood like it usually does...yesterday it was multiple toilet trips after coming home and eating, today I had the same food and have not had to go/run at all -- but not backed up, either.

Apologies for the long-winded-ness, I suppose I am just asking, if 3 Remicades (and it's been 4 weeks since the last one), still haven't done anything, is it worth it to try the 4th? I know that is usually the last straw if the maintenance dose doesn't help. My mom had encouraged me to do it just in case it DID work this time, but I am becoming so against the big chemical solutions that I feel like I wouldn't even want to be on it long-term if it did work! It seems like they eventually stop working, anyway. So far I am leaning toward not doing it...any thoughts?

P.S. I'm also on the supplements listed in my signature but can't tell if they are making a difference, either. Since I am relocating and will have totally different medical care I may just start over fresh with a naturopath - I have a recently diagnosed friend who is on that path and I'm definitely interested in trying it - I could always do Cimzia at a later date if I really want to do chemicals again -- but the Remicade has to be decided now!

MissShell, what is your dosage and frequency for remicade? I would assume you are on the 5mg per KG dosage, at an interval of 8 weeks (which is the standard uc dosage). I would recommend asking your dr to increase the remicade dosage and increase the frequency. As some people here do well with 10mg per kg on a 6 week interval. If it were me in your situation, then I'd definitely get the surgical consultation. Not because it is necessary, but rather I would want to be prepared just in case I do need it.

Silenus, you have some misconceptions about remicade. Yes, it is true that remicade increases ones odds of getting cancer but they are very long odds. The odds of the average person on the street getting lymphoma (without any disease at all) is 2 in 10,000 (or 0.002%). The odds of getting lymphoma while on remicade is 6 in 10,000 (or 0.006%). If those are the statics that are keeping you awake at night, then I think you need a reality check. Where as the odds of remicade improving your symptoms is 60% or more. The benefit far outweighs the risk. I recommend you read "Balancing the Risks and Benefits of Treatment For Inflammatory Bowel Diseases" by the Crohn's and Colitis Foundation of America:
http://www.ccfa.org/assets/pdfs/risk-and-benefits-transcript.pdf

Yes, I realize the cancer odds are low for sure. However, the studies I read described a significant increase in the cancer in young males who were on and/or continue to use Azathioprene for their condition before and during Remicade. That would place me in this group. And we're not talking a mild cancer, we're talking fairly fast death. Again, I realize it's low in terms of odds but I also think its important to not ignore the possibility.
Thanks for the stats, if they're accurate that's reassuring to know! I will probably end up trying it if the Doc recommends. Very frustrating when you have remission for years then the condition collapses out of the blue. Toss in the sudden changing meds and it creates some mad stress for the system.

Silenus said...
Yes, I realize the cancer odds are low for sure. However, the studies I read described a significant increase in the cancer in young males who were on and/or continue to use Azathioprene for their condition before and during Remicade. That would place me in this group. And we're not talking a mild cancer, we're talking fairly fast death. Again, I realize it's low in terms of odds but I also think its important to not ignore the possibility.
Thanks for the stats, if they're accurate that's reassuring to know! I will probably end up trying it if the Doc recommends. Very frustrating when you have remission for years then the condition collapses out of the blue. Toss in the sudden changing meds and it creates some mad stress for the system.

that would be scary and I did hear that too. I checked with my longtime doctor back at home before getting treatment out here, (moved recently before flaring) and he agreed with the new doctor trying biologics for me, but did say if I was a male in my early 20's he likely would not put me on it due to the reason of the higher incidences of cancer.

Thanks Joanna I will check that out...wow one poop no blood or urge, sounds like heaven, or my life 9 months ago...lol.

miss shell, it's weird to be honest!! before i tried it, i thought "this could either go really well or really terrible since it's totally against the SCD." thankfully, it's been great. i am only on day 5 though and have not gone through any taper changes since i started it, but i will be going down to 15 mg in a few days so we shall see.

my resistant starches are 1 green banana in the morning and 1 sweet potato or potato at night. i bake them in the oven and then let them cool- this makes the resistant starch content higher. the sweet potato tastes way better cold than the potato but i figured i'd try both. since they are resistant to digestion, my poops have been large and orange on my sweet potato days haha

soystud, i was eating my bananas VERY ripe with black spots all over them. the ones i have now taste like butt because they are so unripe.

For some people it takes 4 or 5 before they start noticing a big difference. The loading doseage is supposed to be 10mg/kg and then for the 4th infusion on, you hope to drop down to 5mg/kg and do it at every 8 weeks. But, depending on how you react to the drop, you might continue at 10mg/kg or 7.5mg/kg and maybe only wait 4 or 6 weeks.

Are you also taking Imuran (Azathioprine)?

No Imuran, I was on it for two years prior with Lialda and Canasa and doing ok until most recent flare. the doctor I started seeing here took me off everything and put me right on a 60mg dose of prednisone back in June. Later with remicade he put me on imuran again at 75 milligrams, I had been at 125 for years. that didn't really seem to help and I got off of it because I got this awful dead taste in my mouth that nothing would help go away. I never had that side effect from it before but it stopped a few days after I stopped it. Then the 2nd new doc put me back on imuran during the Remicade at 50 milligrams and I did that for a month but started getting that same side effect again and said it was ok to stop since it wasn't helping anyway. I believe that's why he was trying to prednisone again in combination with the Remicade to try to push through this last one but I just don't know if I am willing to keep trying it!

Post Edited (MissShell) : 11/27/2013 11:21:08 AM (GMT-7)

Have they tried increasing dosage (quantity per infusion)?

I'm a 30 year old woman who uses remicade as my only medication currently. I've had an up and down relationship with the drug myself. I have started a blog if anyone is interested in reading my experiences with UC. Thanks!

http://mygutinstinct.blogspot.com/