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Just got back from an e-doc visit...Prednisone + remicade + 6mp?

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Posted 8/9/2012 4:44 PM (GMT 0)
I'm running out of options. And feeling very defeated. We're going to keep going with the remicade, and I'm being thrown back on prednisone (50mg/week and taper 10mgs each week, to get me well enough so I can go on my honeymoon this month), but in addition to all that I'm starting 6mp. Is this at all safe? I'm really terrified about taking all three of these at once. The doc said the 6mp will take a while to build up in my system, so by that time I'll have tapered down on the prednisone a little... And the disease is being *very* aggressive, so I don't want to question this too much, but it does seem like a lot!

If this doesn't work my only other options are to try humira (which I can't afford), have surgery, or get a second opinion.

Has anyone else ever had this combo before?
Posted 8/9/2012 5:38 PM (GMT 0)
Urgh, sorry that you are having such a hard time of it at the moment :-/

The most dangerous drug by far out of those three is Pred, so once you're off that it will be okay as far as relative risks are concerned. It'll take 2-3 months for the 6MP to start working, so that's probably why the doctor is giving you steroids in the meantime.

Also, another reason why GIs often like to prescribe an immunesuppressant and biologic together is that the immunesuppressant helps to delay the buildup of antibodies to the biologic. Though usually the patients starts them at the same time. How long have you been on the Remicade for? It's possible you might have built up antibodies already, which is why it is not working. That's what my GI thought happened with me, although I never had an allergic reaction: the Remicade just didn't work.

A pity you can't give Humira a try... Good luck!
Posted 8/9/2012 6:27 PM (GMT 0)
Honestly the doctor didn't even want to put me on pred... I just ended up breaking down and crying at the appointment because I'm supposed to go on my honeymoon at the end of the month and I'm just so sick of feeling like crap and I didn't think I was going to be able to go because of all this. So it was more of a pity-pred. I also got some ativan to take the edge off.

I was started on remicade in April, had 3 infusions at the lowest dose and then they bumped me to a higher dose which didn't seem to do anything and now I'm massively flaring. I'm not sure why they weren't started at the same time.. I think we were just trying to do the most gentle thing to see if it would help, but at this point it is just spiraling out of control and I feel like we need to be more aggressive. I'm really hoping all this stuff helps so I don't have to have surgery :\
Posted 8/9/2012 7:04 PM (GMT 0)
I supose you have a lot of help with your wedding! All that meds may have limited effect if your are so stressed.

In this situation pred is the way, and you have to relax about the moon faced photos. Smile!

Like NCOT said, today, Remi along with 6mp or Imuran is almost the usual protocol. Go ahead!

Have I said to relax? Know how to meditate? Long praying walks? Right now I'm trying to learn that :).
Posted 8/9/2012 7:53 PM (GMT 0)
Well, the Pred should work at least - it's the only med which has worked for me so far - but it's such a two-edged sword. Still, I hope it enables you to enjoy your honeymoon at least.

Yeah, the Remicade is not likely to work now :-/

Surgery may be the best option if your Crohn's is in a relatively limited area. Resections are extremely common and give many people years of remission. If you're like me and your entire colon is affected, then you're a bit more stuffed... :-/
Posted 8/9/2012 7:55 PM (GMT 0)
Yeah, my whole colon is affected. It's all gotta go if I do have surgery. Then there is always the risk of it coming back somewhere else.
Posted 8/9/2012 8:47 PM (GMT 0)
Yep, it's rubbish isn't it? Can't even have a j-pouch with Crohn's, but have got to have the external bag. And the knowledge/fear that the disease will creep its unwelcome way back.
Posted 8/9/2012 9:44 PM (GMT 0)
Yeah, sometimes I just feel like this really isn't worth it. Maybe I'm being melodramatic, but I was never a good "card player" and I hate being dealt the crap hand in life.
Posted 8/9/2012 10:03 PM (GMT 0)
Feel the same way. Even pre-Crohn's, I was never going to be one of life's super successes - you know, being an athlete, CEO, or whatever. Now every time I read an 'inspirational' article about somebody with severe Crohn's who works 80 hours a week, does 3 different sports and has 4 kids, I can feel even more of a failure!

I jest, but only by the skin of my teeth. I don't know - I suppose I'm an oddball because everybody else seems to find inspiring articles actually inspiring, but I just can't relate to them. They do nothing for me. But I read your posts and I can think 'yes, I understand'. I dunno why. Maybe that's a bad sign for you!
Posted 8/9/2012 10:17 PM (GMT 0)
It definitely is! I'm too negative. I wasn't always this way, it's been a slow gradual process from getting clobbered over and over again (not even just by Crohns). I've been through the ringer and I just want to get out. I read those stories, too, and I hope someday I'll have some miracle turn around but it's hard to keep thinking that way when it seems like the metaphorical boat is going to crash. I will always hope, though, and keep on keepin' on... even though most days I'd rather not. I do enjoy life so much, when it's not like this.
Posted 8/9/2012 10:36 PM (GMT 0)
I'm a pessimist by nature, albeit made much more severe by depression and Crohn's. I try not to feel absolutely hopeless, but on the other hand it's hard for me to feel hopeful. I don't see any med working, when all the meds before me have failed. Surgery scares the pants off me. It's frustrating because I want so badly not to be ill and tired anymore. I'd have surgery - and a stoma - in a heartbeat if it could guarantee me being well again, but with Crohn's you can never have that guarantee and I'm not a huge risk-taker.

I do feel annoyed with myself that I wasted my life pre-Crohn's. I feel now that if I could become well again, I'd really try to make what I could of my new-found energy and health.
Posted 8/9/2012 11:13 PM (GMT 0)
I think most of us are, tbh. It's hard not to be when our doctors cram us full of drugs and well-intentioned people shove remedies in our face. It'd be nice if there was just a simple solution to this all so we could be done with it.

I know what you mean about the surgery. I am in the same boat. But try what you can for now and see how you do. If you're like me, you're probably pretty high-strung most of the time when you are feeling like junk... So do try and find something to help take that edge off, even if it's a prescription. Sometimes a good drug induced sleep can be the best thing ever when you've gone months of not being able to fall asleep either from pain or anxiety (or both).

And... don't have regrets. You can still do things even with Crohns. You might have less energy and feel like garbage, but you can always accomplish *something*... even if it's just lending a helping hand to some grumpy lady on a forum :P
Posted 8/10/2012 1:43 AM (GMT 0)
and my wife says I'm negative.

I'm quite sure that's a Crohn's sympton too...
Posted 8/10/2012 1:57 PM (GMT 0)
Cheers, WZ :p

Do agree, getting enough sleep helps enormously. I don't sleep that well typically and, although I'm used to it, I do feel better after those quite rare nights I get 8 or more hours sleep.

I think lending a hand on forums is all I'm capable of most days :p ... Fatigue is a problem with me :-/
Posted 8/11/2012 1:02 PM (GMT 0)
There are assistance programs that help with the cost of biolologics. They are from the drug company and on the actal drug's name website under "support" or "co pay assistance". I've never used humira--I know they have one-- but I've successfully used the programs for remicaid, enbrel and now orencia. (I have rheumatoid arthritis along with the Crohns). It usually turns out to be $5 or $10 a month, and works along with your insurance. It may not be the route you will end up with, but I wanted you to know that there are programs out there that help with the high costs.
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