Remicade?????

I don't really understand what you mean by that. I was on Remicade for about six months because 6mp made my WBC go really low. It was great and had no side effects on me, and got me off of steroids. My veins really suck though, and I had had quite a few IVs throughout life, so by the time I was in remission my hand and arm veins were too scarred to take an IV ever again. I would have needed a central line (which I will also need if I ever have to have an IV for any reason), and since that carries a risk of infection, and so does Remicade, my GI said that I would be safer to go off it unless I start to have bad symptoms again. Most people stay on it for maintenance, but most people have better veins than I do. The only symptoms I have now are fatigue, mouth ulcers and joint pains, plus a slightly elevated sed rate-- as good as I ever get. If you, unlike me, can tolerate 6mp, it's usually considered a good idea to stay on it when you start Remi, because it makes Remi work better and decreases your chances of getting an allergy to it.

How long have you been on 6mp? It can take up to 6 months to work fully. Also some people who don't respond to it, do respond to azathioprine, even though they are pretty much the same thing. So if you are dead set against taking Remicade unless you absolutely have to, you still have options.

I don't really know what you mean by holistic? Probiotics can be useful in tandem with your other meds. You can also keep a food/ lifestyle diary to see what sort of triggers you might have.

For more general info on Remi you can poke around on www.ccfa.org, as well as on www.remicade.com, which is biased of course but is up-to-date. For more personal stories, go to www.ibdsucks.com, register (you can use a fake name and e-mail address if that makes you more comfortable), then click on "pharmaceutical drugs." You will see a link to "Remicade survey" which is a list of people's personal stories with Remicade, and another to something like "Remicade and Humira" which is more of a discussion thread. I think there is also a Remicade yahoo group but I don't know the url and I unsubscribed after I went off it.

If you think you might need it, do whatever you can to start saving cash for the co-pays. Get a Health Savings Account or something if you possibly can. That stuff is expensive. Also take a blanket or poncho to the infusion centers, because Remi is refrigerated so you'll get cold during the infusion and you can't really put on a jacket over an IV.

Did I experience... the hard time? Yes. We had a very hard time financially because I could not work for 2 years and was turned down for SSDI (just had a court hearing on that two weeks ago and am waiting to hear). We were maybe slightly better prepared than you because I was dx'd with IBD when I was 13 so I always knew disability could be an issue, but nothing makes it not-rough. Our credit is now dreadful and we were a terrible burden on my parents (DH is a grad student and doesn't make much money yet).

On balance, although it was expensive, Remi was well worth it to me financially, just because I am able to work again.

I see what you mean now about the short life of the drug. Well, I figured, it might have scary long-term effects that we don't know about, but we DO know that prednisone will pretty much kill you if you're on it long enough (it took a few years off my grandfather's life according to the docs).

They do use a very small needle for Remicade. So if you can take any IV at all, you should be able to manage it; otherwise you may need a central line, as will I if I ever need the stuff again. My understanding is that, with active disease, the benefits outweight the risks.

Are you having blood tests to measure liver functions, WBC, and whether the 6mp is at therapeutic levels? Some people need to take more of it than their weight would indicate. Also make sure your doctor recommends you for a flu shot.

I have also met a few people with CD who went on liquid diets (the prescription kind) or even TPN for a while as "gut rest" which can also help induce remission. You could ask about that as an option if you think you would prefer it. I tried the liquid diet thing when I had active dz and it did no good, but it has helped some people.

IBD is sort of epidemic on TNH, by some weird coincidence.

Prednisone can cause mood swings so may on its own be partly responsible for the "depressive stupor."

I'd never even heard of it till I came here, got to know Becky and then bang, she transfers it to me psychically I reckon!

I was diagnosed just over a year ago, but other than being quite naughty I think I'm now pretty much in remission (touch wood). There is life after prednisone I promise you. My acne has actually gone, my weight dropped back down to a perfectly normal level. My sensitive skin is reacting to it not being around though, because the joy of steroids is that they controlled my eczema. I'm still dealing with the fall-out from that, but my wonderful GI prescribed me some topical steroid cream and life got better!

I started on Asacol, but the Crohn's was actually in part of my small intestine too, and Asacol doesn't dissolve quick enough (on purpose) so I switched to Pentasa. Much the same, but without the coating, so it tends to dissolve in my mouth if I'm not careful - ick!

Can't help you with the other stuff I'm afraid, but having just pulled out of the other side of my first experience with Crohn's I'm here to tell you that life really can go back to nearly normal. The horrible thing about the steroids is that every time you think you've gotten a handle on the side-effects another one pops up. I've never known a drug with so many side-effects. It's not fun to deal with, but it really did help me, and the side-effects do almost entirely disappear. The main long-term side-effect you have to watch out for is the fact that it easts away your calcium, so you should have had a bone scan or two, and you should be taking a calcium supplement I expect.

I'm amazed at the difference Remicade has made to Becky though. At one point she could barely even walk and now she keeps telling us about her weight training!!

Good luck with your journey, because it isn't easy. In spite of everything though, I think I've changed quite a bit as a result of Crohn's. It has forced me to slow down, which in turn forced me to think about some things differently.

Kerri.

I haven't weight trained in months. Lazy.

I did figure out where the university gym was today!

I have been on Remicade infusions for about 2 years not for Crohns but for Rheumatoid Arthritis. I get an infusion every 8 weeks and the results have been great. I haven't had any serious side effects and I have had no problems with the infusions. It is scary to go on a powerful drug. I too was very worried about it and I also have to be on Methotrexate along with the Remicade as this is how they use the drug for RA..in combination. though my Rheumatologist did say that they are now testing using the Remicade w/o the methotrexate. I am also on a low dose of prednisone;5mg a day and we want to try to cut that down since I am doing so well on the Remicade so here's hoping I can do that. Hope you do as well with Remicade for Crohns as I have for RA. Good Luck

I'm looking around to get help for my 21 yr. old daughter whom has had crohn's since she's been 9 yrs. old. Has had very great results on Remicade, with NO side affects at all.
But her age, is forcing her off her Dad's Ins. She is working but her Ins. only starts after three mths., then only pays 75%. Which is about $800.00 every six to eight weeks. Does not make near enough on present job....need help!!!

I don't know where you live, cherry or Isabella, but I'd look around and see if there is a Support Group for IBS &/or Crohn's near you. Not only will you get moral support, but they might have answers to some of your questions, including how to afford the treatments, perhaps.

When I was in college I went through a rough patch which coincided with the death of a close family friend. The University had a functional mental health program for it's students. I went to their support group and it was an enormous help. Just being in the same room with other people who have experienced what you're experiencing is good medicine. It's what popped into my mind when I read the last couple of posts.

____________________

Of all the wonders of nature, a tree in summer is perhaps the most remarkable; with the possible exception of a moose singing "Embraceable You" in spats.

-- Woody Allen

I recommend that you go on the Crohn's web site. There is a new treatment option, still investigational, but promising.

The treatment is a series of infusions of stem cells (Prochymal).

IF ( a big IF ) it works, it would be a huge therapy change in the treatment, and onset of remission, of CD.

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Is it true that if you have been on Remicade, and discontinue, you may not go back on it?