Methotrexate vs. Remicade -- Help me pick my bride!

[sibelius]

So, my doctor told me I need to get married soon, and the bride will either be Methotrexate or Remicade. I hear they're both pretty high-maintenance, but I'm sure we'll be old cro(h)nies in no time!

I know there's been some recent discussion here about remicade -- how do you think it compares to methotrexate? My parents are both doctors, and they had an immediate negative association with methotrexate, although my GI said it's a great drug that has the potential to work very well. But even though my doctor seemed to prefer that one, he suggested starting with the Remicade instead, while still leaving the decision up to me and my family.

There is a sea of information out there on the web, and I'm not quite sure how to sort through it all -- particularly when deciding between two drugs that are potentially [1] life-long and [2] equal candidates -- any advice or experiences would be much appreciated!

:sign0085:

 

[Kev]

Hmmm, I looked at metho (didn't look deeply into Remicade, couldn't afford it, so why bother). I REALLY didn't like what I saw. Nasty potential side effects, and it seemed to me rapidly diminishing returns... 2/3 chance of it working 1st year, but only 2/3 of 2/3 the next, and so on, and so on.. IF I understood it correctly. those numbers... say for argument sake a group of 20 14 respond ok. next yr it drops to 9 .. then to 6... Well, think that's how the scenario is supposed to play out... Pretty long odds. And those side effects, really scary.

Sad fact is that, if LDN didn't work, or ceased to work.. Metho is about all I've got left to turn to. On the plus side, you can inject it yourself, avoid trips for IV infusion. and I don't recall (could be mistaken) it has the anti-body potential of Remicade... nor the cost. I mean, if one can afford it, has insurance to pay for it.. well, I'd probably go Remicade.. Someone else on here was looking @ remi, and I suggested they inquire about Humira... but her dr raised concerns about a possible link to a form of cancer (I think) which is why he suggested Remi.. I don't quite understand it... I thought, aside from the mouse protein issue, they were extremely similar. don't know how one could be linked to cancer, other not.. Anyway, someone else expressed an opinion that Remicade is not a life long proposition... that typically its benefits don't last longer than 5 years, but I don't recall seeing any scientific or anecdotal data to back that theory up. The preference thingy between Remi & Humi MAY be just that dr's are more familiar with Remi... And, that the cancer risk from Humi may also apply to Remi, or may be so small as to be discountable. Like, folks are at risk of a lightning strike, yet how many people do you know who've been hit by same? A poor analogy.

Well, now that we've got the meds straightened out, lets move on to your bride. You realize I'd have to sleep with her 1st. Send her over, and I'll get back to you

 

[saidinstouch]

Kev you are in fact correct about the fact that both are "linked" to cancer. Both Humira and Remicade carry a label indicating they have the potential to increase lymphoma incidence, but it is basically such a small increase it is almost statistically insignificant and could be a matter of sample size.

Sibellius I would recommend remicade first if you can avoid it. Methotrexate is a NASTY drug and should only be used in dire circumstances...I.E. all other options have been explored. Its teratogenetic(I think that's the word for causes germ cell mutations in both males and females and requires you to be off the drug for 3-6 months before considering pregnancy from both male and female perspective), it causes nausea, anemia, diarrhea, and many other nasty effects. Additionally, it causes rapidly dividing cells to die due to inhibition of purine base synthesis leading to DNA Synthesis inhibition. The cells of your intestines are rapidly dividing and so MTX leads to mucositis and damage of the intestines. There are some treatments like administration of folic acid to help prevent some of this damage, but in general MTX is a very nasty drug...if it weren't so nasty, it wouldn't be one of the most effective chemotherapeutics around.

I'm not saying remicade is better, but I would definitely choose it over MTX. The research I currently do revolves around MTX and I know that being close to going on it myself, I am very VERY unhappy with that prospect, whereas I've been on remicade or humira for 2+ years.

 

[sibelius]

Thanks, Kev and saidinstouch. One question that just occurred to me:

Methotrexate is an anti-folic acid medication. However, as I've been tapering off prednisone this past month and a half (started at 40mg, now I'm down to 20 mg), my GI's been having me take daily folic acid supplements.

Seems like a contradiction to me, that now I'm boosting folic acid, and later I might be suppressing it? What's the role of folic acid in all of this?

 

[Kev]

Hey Sam, I haven't the foggiest. Maybe someone on here has some info on this?

And, saidinstouch... Can you clarify something for me.. Am I to take it that, if it came down to a choice between remi or humira, you'd recommend remicade 1st?

If so, can you educate me on your reasoning? I'm guessing its remi has been around longer, or the results ### are slightly better for it than humira. That's the part I'm not getting.... my gut instinct would have had me thinking humira is the 1st choice of the two... no mouse protein, easy self injectors, lower cost, less risk of antibody issues. See, I tossed those opinions at another poster on here recently, AND according to him (his doc).. Well, his doc told him he favored remi over humira CAUSE humira posed the 'cancer' risk. If they both do equally (or near enuff it don't matter).. then either that doc is wrong, or he deliberately mis-informed his patient. Anyway, you've been on both... is there something I am missing that would tip the odds/scales in favour of remicade over humira?

sorry to have hijacked this post.. just I'm really intrigued over all of this now!

 

[BWS1982]

That was Kitty in her I have Crohns thread, either Support forum or Treatments forum, maybe she will see this and elaborate any further info?

 

[saidinstouch]

My docs have pretty much told me both medications carry the same risk of lymphoma...which is still essentially no higher than the expected level for the most part. It is a slightly higher risk but it is very small. The reason I recommend remicade first is that I got better results from it and its been around longer. The potential reaction from the mouse protein is pretty small with the administration of benadryl and if you are properly monitored you will be perfectly safe should a reaction occur. Obviously some of this is personal preference for me, so the choice of humira vs remicade shoul d be made by each person and their doctor. I was very happy with remicade and while the humira is working well, I feel it isn't quite at the level of my remicade relief. Granted I was on a very high remicade dose and a comparable dose of humira would probably be as effective for me.

You are right that it seems contradictory, but the reason MTX works is that cancer cells are dividing much more rapidly. Many chemotherapeutics work by exploiting this fact. Drugs can target a cancer cell because of their rapid division compared to normal cells meaning their needs to survive are different. A toxic chemical can kill cancer cells more selectively by targeting the DNA, RNA, or protein synthesis pathways. If you induce toxicity in any of these pathways, cancer cells will be affected more greatly than normal cells, but normal cells obviously feel side effects too. You should check to be sure that you are not meant to take folinic acid because from a quick read on wikipedia, folic acid can cause adverse effects when taken with MTX. This is a rescue agent known as leucovorin that works because its conversion to tetrahydrofolate is not dependent on the enzyme which MTX inhibits. This allows a low level of purine base synthesis allowing slower dividing cells to divide properly while cancer cells divide more rapidly. This is probably as clear as mud to you, but I tried to explain it in simple terms taking a lot of this information directly from wikipedia since remembering the details is a rather massive task. I've been doing research on MTX for 1.5 years now, but I can't really specify what, just that it has the potential to make the drug much less harmful.

I'll try to answer any more questions you might have, but really make sure to check with your doctor about folic vs folinic acid with MTX. Also read the wikipedia pages on methotrexate, folic acid (especially the part on anti-folates), and folinic acid. It is possible that the lower dose we take calls for folic acid, but just check to be safe since there is a difference between the two and they have different modes of action and effects in the cell.

 

[BWS1982]

Ever since "Doc" that newer fellow came here I've continually run into references to Wiki, perhaps it shouldn't have been said to him to refrain from using it as a reference, since even the more informed/educated individuals who're in the medicinal field refer to it? I know it greatly varies on whether it's a trustworthy source, but not having seen "Doc" around since his arrival, I've wondered about this...

Not to be hard on you Saidsintouch, just observing....

 

[Kev]

Yeah, I hope that any comments I made about Wiki didn't put anyone off.. Like, I have nothing against it.. Think they tested it against a highly respected 'printed' version of an encylopedia... and they were on par (tho both did contain 'errors')

Just that, I would opt to use a pharmaceutical reference book versus a 'general' encylopedia if looking up something pertaining to drugs.. same as I'd bow to a medical reference book vs Wiki, or Britanica, in looking for medical info

Yeah, folks.. if anyone on here ever infers a 'judgement' from something some one here has posted; I think it's a mis-understanding. this is the 'friendliest' group on the net you will ever meet.

 

[butt-eze]

I tried remicade and have discontinued. However, I would choose remicade over methotrexate. I am choosing humira over methotrexate now. My concern with methotrexate is the affect it would have on my liver, among other things.
I have had chemotherapy and I'm not really worried any longer about how that will affect me. I never felt that bad. Ok, maybe a little.
Also, as weird as it sounds, I like relaxing to having infusions. It is the only time I am forced to sit down and not chase after my son, clean the house, etc. I can eat a snack, watch a movie, and read a magazine. It was my time; and, in a sense, my reward for all I've had to go through. Infusions aren't bad that bad.
Any of these drugs have scary side affects. This is why we need to be pro-active about getting involved in our local CCFA chapters, raise money, and awareness to find a cure. Or at least a safe drug!
Get involved!

 

[saidinstouch]

Wikipedia just happens to be an easy to reference source and they do a good job explaining methotrexate in simple terms. If I felt the information wasn't right I would definitely have went elsewhere, but as I said I've been working with MTX for a year and a half doing research leading to a phase 1 clinical trial in the near future. What I posted has been verified during this time by a group of research scientists and the professor I work for who has been doing research for probably 30-40 years now. I love this research and am glad I'll be continuing similar research at UCSF for grad school. Having this disease just makes me more interested in learning what I can during school and reearch experience to help all of us out, and sharing what information I can (and feel I actually know well enough to share) brings me some sense of contribution to our cause.

I do agree that wikipedia is often not the most reliable of sources, but it also depends on what you are looking up. A drug like MTX which is completely generic now has no reason to be improperly changed whereas a political candidate or a bigtime CEO might want their entries to be biased. I take no offense to skepticism or doubt about using wikipedia as a source because I agree that taking it at face value is a bad idea. However, it is often a great place to start research and follow the referenced sources to gain a decent background on a subject. Literature searches are often a lot easier after gaining a fundamental understanding from wikipedia.

Here at UC Santa Cruz, there is a professor who is working on a project to show the trustworthiness of wikipedia entries and he has been getting excellent results that might actually be included in wikipedia in the near future using a coloring system to show which parts of an entry are more or less reliable. Its a complicated machine learning process based on a users edit/revision/rollback history. Hopefully it will be available soon so we can lay to rest the quality of wikipedia entries .

 

[sibelius]

Thank you all for the great information and advice! I've just scheduled two appointments for Remicade infusions, one next week and another 2 weeks after that. If all goes well, I'll settle down with a "regular" schedule of every 6-8 weeks. The biggest concern about it that my doctor had, is that it might not hold it's power, but I suppose there's only one way to find out!

For me, the biggest issue here was simply picking one. Although I like to feel like I know exactly what I'm doing, I'm also very trusting, and I have a great doctor who told me that either would be a reasonable decision. I'm really comfortable at this point picking either (although methotrexate is a little scarier now!) but you've convinced me to go with Remicade first (which is what my GI had suggested anyway). You're right -- they both have scary side effects, but they both have wonderful promises, too. If Remi doesn't work, maybe I'll try methotrexate in the future -- I hate to even consider that divorce would even be an option, but what will be will be.

 

[saidinstouch]

Your doctors concern is legitimate as remicade does have a tendency to lose its power after 2-3 years. You can up the dose and increase the frequency to maintain some of the effectiveness but even then your time is somewhat limited. However, a lot of people get excellent relief during their time on remicade. By the time you should even have to think remicade might be losing its effect, there will be more options out there than MTX, humira, cimzia(just recently approved), tysabri, and prednisone as the heavy hitters.

 

[sibelius]

He had the same concern about another drug I've been using, Flagyl (Metronidazole). I used it for a week as a transition when I started the prednisone a month and a half ago, and all of my pain immediately went away. But he took me off it after a week, because it sometimes loses its power, and he wanted to "save it as a bullet" if it is ever needed again. Of course as soon as I dropped it, the pain started to come back. I just started with the Flagyl 3 times/day again last weekend, because the pain was really coming back again, and since then have been again almost pain-free. Our short-term goal, at this point, is to get down to only one medication - Remicade. After we achieve that goal, and if I can get fully into remission, then we'll see where to take it from there.

This is all very new, as I was only diagnosed in January, and my symptoms began last October. I planned my winter semester at college before the diagnosis: I piled on 18 credits (the maximum offered), including the 2 hardest classes I've ever taken in my entire life, figuring I'd push myself to never sleep, work harder than ever, and get my first 4.0 at college (this was my 3rd year). So the Crohn's definitely could have hit at a better time! Needless to say, I *did* sleep... a lot... and it was a rough semester, but I ended up finishing surprisingly with a 3.97 (got an A- in my easiest class - go figure!), which was my best GPA ever, and I also got an award for an essay I wrote for one of those 2 hardest classes (which I had turned it at the very last minute after 2 extensions. The professor was very understanding of my illness, in terms of giving me lots of extra time for essays, and also one of my other professors in particular was *very* understanding, which helped me a lot emotionally, as well as academically. "I care about what you do in class," he'd say. "But I care more about your health." He even offered to have me completely skip the final exam, or at least take it instead after the summer vacation, so that I wouldn't have the extra burden. Of course I'd have none of that -- I took it anyway, "informally", and did quite well!).

So I'm off to a "good" start, even if it's also been quite rough as well.

 

[sibelius]

Question: how do you generally feel after a Remicade infusion? Does it make you drowsy for the rest of the day , or do you generally feel pretty normal?

More directly, would it be safe to drive for 3 hours afterwards? I'm thinking of meeting some out-of-town friends for dinner the day of my first infusion (my appointment for the remicade is at 10:00 in the morning), and they'll be about 3 hours away, which is too close for me to pass up the opportunity! (Though I might have to pass it up, if the Remicade will make me drowsy.)

 

[saidinstouch]

I'm glad to hear your semester went so well and that your professors were so understanding! I've been mostly lucky with my crohns and aside from a poorly timed surgery, it has been fairly tame in how its affected my schooling.

I'm surprised your doctor is worried about flagyl losing its effect as I know some people use it as a maintenance medication. Some antibiotics lose their effects, but I wasn't under the impression that was a concern for flagyl. However each doctor has their own experiences. Your goal of getting down to just one medication like remicade is really the best way to go and I hope you get great results from remicade!

 

[saidinstouch]

You would not want to drive 3 hours afterwards if they give you benadryl which seems to be a fairly standard protocol. In general I would say wait a good 4-6 hours for the drowsiness to wear off and to see how you feel before you really decide. If it is the day after, then you'll be more than fine to go see them assuming you are driving the day after as well. If you are given a benadryl shot, then expect to just be dazed most of the day. I usually was exhausted till sometime in the evening and would either nap or just relax and take it easy the rest of the day. Treat myself to some sort of tasty meal and just make it a day all about me! Its a great excuse to do something like that and put a positive spin on the day.

My thoughts aren't exactly coming out well right now so hopefully you get what I mean and it isn't lost in my crappy typing .

 

[BWS1982]

Not sure what it means, but in my 4 infusions so far, none were supplemented with any Benedryl, I'd know that, as I practically become narcoleptic after that stuff (I was far to lucid and alert for my infusions for any Benedryl)

 

[saidinstouch]

Weird...it is typically given so in the event of an allergic reaction you already have benadryl in your system to seriously curtail your bodies response and make a potentially serious reaction a lot easier to handle. I thought it was fairly standard protocol as 3 different doctors and 3 different infusion centers all basically required me to take the stuff when I was first seen and I chose to continue taking it after the centers knew how I would react just for my own piece of mind. Most people won't need it, but it is always nice to know you have the backup just in case!

 

[BWS1982]

Yeah, I'm aware of why it's administered, but perhaps it was foregone in the hospital for the first infusion, due to me already being in a very large hospital? Who knows. I played on my laptop and PSP while the first infusion was in, not possible if I was on benedryl unless it was a very small amount that my body wouldn't have such a reaction to it as it normally would?

 

[saidinstouch]

You would know if they did a benadryl shot. That BURNS like hell!!!! If they didn't give you a pill to take, then I guess they have their own policy or your doctor didnt prescribe it.

 

[sibelius]

Well, it turns out I hate the dates wrong -- the remicade is on Wednesday, and I'm planning to meet my friends on Thursday, so there shouldn't be a conflict after all.

So, how does this work? Do you just lie there calmly with a book or T.V., or sleep, or chat with someone for 2 hours? Do they strap you down with 3 metal rings around every joint and a piece of duct tape over your mouth? I suppose I'll find out soon enough on my own.

 

[saidinstouch]

Usually it is pretty relaxed and you just read or sleep or whatever for the duration.