Top Down Approach - Should I do It?

I am a 40 year old male. My Crohn's returned this year after a 26 year remission (med free) after a resection at age 13 (diagnosed age 9 in 1979). I happen to be one of those "lucky" ones with only mild to moderate symptoms. My bloodwork showed I was slightly anemic at first but 6 months later all in the normal range. I feel good with plenty of energy throughout the day. I have some cramping pain now and then that goes away in a minute. I am constipated as some are, but my worst symptom is that my middle right finger, and now a toe on one foot, is inflamed and becomes painful at night to the point where I can't bend my finger. Within minutes of waking, the pain goes away and the movement returns. I understand this may be a form of rheumatoid arthritis.

It seems that the concensus on this forum is to take some kind of med to keep the inflammation in check to avoid strictures and prolong surgery. My doc wants to start me on Remicade infusions with a skin test for TB, chest x-ray, and test for Hepatitis B and possibly 3 vaccinations if I am not immune. Infusions to be 1st week, 2 weeks later, 4 weeks later and every 8 weeks.

I asked about Pentasa or Asacol but he strongly recommended the Remicade which is done in their own facilities.

I am not losing weight, weak, or tired and my blood counts are good - but the inflammation is there as evidenced in my finger and toe. Should I start Remicade or is this overkill as a first option?

 

I'm pretty new to CD, but I'm already on my 3rd med combination, not really knowing if this will be the combo that works (Asacol, Pred and MP6). My GI is definitely a bottom up kind of guy, in terms of medication. I mentioned that I had read that many doctors are now starting from the top up, but he didn't really respond favorably. I understand the idea of getting into remission with the least medication possible, and really, how do they know what will really work when you're initially diagnosed, but given my circumstance, and the fact that it takes more than a month to find out if something is going to work or not, I wish we would have started at the top, since that seems to be where we're headed anyway.

I will say that the worst part of the CD (except for the horrible fatigue in the beginning) for me has been the arthritis pain. Mine was in both pinkys and my knees and ankles. Saw a Rheumy and he ruled out rheumatoid arthritis, said it was Crohn's related. It started about a week after my initial diagnosis, and although the first round of pred knocked it down, as soon as I tapered to 20 mg it came back. My GI ramped me back up on pred, and I'm now down to 20 mg again after about a month, and seem to be doing better now then on the first taper.

It seems to be a crap shoot, man. It takes so long to figure out what's going to keep things in check. I know that we'll find the right combination, but sometimes it just seems like it's taking forever. Kinda wish we would have started at remi, but then again, I don't know for sure that would have worked either!

Good luck to you Gumart, I hope that you find the support you're looking for on this site. It's been a terrific place for me to find information about all the different medications, and more than that, the folks here have a wealth of information to share. Recently I had a horrible reaction to Immuran, and was talking to my GI about the next step and before he could even say anything I said, "so are we going to try 6 MP?". He was like "how do you even know that?" I said "I read obsessively about my disease and I belong to this message board for people with Crohn's, called Healing Well". He said "that's really cool".

I am a person who has a mild case of Crohns. Although I can tell you that I have had multiple surgeries related to Crohns, my Crohns itself is considered mild. I have been maintained now for almost 5 years with Asacol.

But...it sounds like you have left your disease untreated for a longtime and I have a feeling that some surprises are in store for you after your test. The reason I say that is I had a nearly 20 year remission med free once too. It ended with emergency surgery due to a complete obstruction. The disease if not properly treated at all times will continue to do its damage on a microscopic level without you even knowing it.

So I do believe you need meds. I would also wait until after the test to see what condition your intestines are in. If things are bad, then I would go with Remicade, if not too bad, I think a milder med such as 6mp might be a better option. Good luck and keep us posted.

Nanners -

Please excuse my highjacking the thread to ask you about the final line of your signature.

Somebody said...
Currently my Crohns is in remission, but my joints are going crazy!

Are you talking about your peripheral joints? I realize with a 2nd dx of fibromyalgia this may be hard to sort out. But typically, at least in kids, having a flare of Crohn's arthritis in your legs/arms/hands/feet is a often a sign that their CD is in fact flaring.

And the e-Medicine article here

http://emedicine.medscape.com/article/179037-overview

also says that this is usually associated with a flare of CD.

FWIW - offered in hopes of helping you get those joints feeling better and avoiding more surgery!

Sorry to hear that. I have OA too but not that bad.

I sure hope you get feeling better soon. Know what you mean about surgery shy...

When I was finally dxed, they started me on Remicade immediately.  It put me into remission, where I have stayed for 4-5 yrs (on Humira now and Cimzia previously).  We have tried over the years to get down to a lesser drug, but only the biologicals work for me.  I am all for trying them first, if you need to. 

I will also say that my arthritis has been flaring constantly for almost 2 yrs now yet my bowels are in remission.  So much, in fact, that my GI is now questioning my Crohn's dx.  So, they do say that having an arthritis flare is normally a sign of the Crohn's flaring, but it hasn't been so in my case.  And we are having a heck of a time treating the arthritis without hurting my stomach or elevating my liver enzymes.  I would definitely give Remicade a try, if you can afford it and aren't too scared of the risks (I know several people on here will not try the biologicals), as that can help with the arthritis as well.  And yes, definitely see a rheumatologist. 

Thanks, Ivy, for the link. This is not a new idea, as the article implies. The step down vs step up debate has been raging for more than six years, now. In fact, it has been regularly debated at the annual IBD conference in the States in December.  

 

For your doctor to be considering you for remicade use means that the smaller meds would most likely not be effective and they are saving time, money, and a lot of pain. Honestly, I was one that went through a lot of the smaller meds in the hospital and finally my doc said that we were just wasting time that I could be healing with. I have been on Remicade, humira, and cimzia and am currently back on Remicade again. There are pros and cons to both approaches but there are a lot more options now at big gun meds if one does not work. When I was put on Remicade, there were no other option for a few years till humira came out. There are also several more in the beta testing phase.

If you are doubting your G.I. then why not get a second opinion? I can see how you may be a little weary but why not ask to make sure. You have been very fortunate to be able to keep your disease in remission for 27 years without medicine but it obviously was still active on the microscopic level. This disease takes a combo of good diet, exercise, and maintenance meds to treat it. It sounds like you are already practicing good habits with your diet but need to be on something to keep your disease suppressed. This disease can strike fast or slow if left untreated but it will strike. You only have so much intestine and if you go with the resection theory you could end up with short bowel syndrome. Not all resections are done laproscopic and the more you have, the more likely it is you will end up in open surgery. They do not get easier with each one. If your disease can be reduced to mild disease like you are making it sound, you may be able to control it with asacol or pentase. Methotrexate or 6 mp actually sound appropriate for what you are describing. Remicade wouild be the easiest due to the fact that it is only 1 time every 4-8 weeks. Not treating it always ends bad.

my new dr is wanting to wait on starting remicade for a while. He used to start people out on Remicade and it put many of his patients into remission. However now, 5-10 yrs later, he's having those remission patients coming back because it is wearing off and they will have to go to the 'less ineffective' drugs like 5ASA, 6mp, etc. which will probably not be as effective for them. He is of the opinion to keep that penny in your pocket until nothing else is working and then move to the biologics. (I think I'm heading there already, but we're going to try and give Pentasa another try as long as my insurance covers most of it) If none of those drugs work they'll probably have to start with the more 'dangerous' biologics like Tysabri (has a chance to kill you with little warning but it was only in 2 patients during the trial and none since it was put in the market so it is a very very rare chance, but it's still there)

I have the opinion of working your way up. You don't want to put all your eggs in one basket.