Remicade?????

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.

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 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 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

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

I was admitted to the hospital in february with severe pan colitis. They started me on prednisone very high doses with no effect. My GI told me my options were surgery or trying remicade. I obviously chose the remicade. I've been off work for nearly 3 months gradually cycling down the prednisone. Not the nicest drug in the work might I add. Haven't had acne like this since I was 16 or so. The upside is the hunger. Lost a grand total of 50 pounds so it's helping in my weight regain. Just have to be careful not to irritate bowels. I just had my 3rd infusion of remicade. Had a slight reaction but nothing severe. They just gave me benadryl and cleared up. Feeling a lot better from when I was in the hospital. Not 100% but certainly much more liveable then before. With proper diet and medication hope to be in remission in near future. As for staying on Remicade I'm hoping to get off of it when the time is right. I've discussed with my GI about the next drug and he's suggested Immuran which is another immune suppressant but not as nasty of side effects as opposed to remicade.

has anyone tried using holistic support for their immune system while on remicade?

My grand father was on Remicade for nearly 2 years. It worked great for his Psoriasis and Arthritis. But this past year we unfortunately got to see the side effects of this drug first hand. After being in the hospital for nearly two months they determined that he had acquired a bacterial infection on his lungs which took nearly 30% of its ability to work. Fortunately enough it wasn't cancer but what he went through was definitely tough. If you do plan to use Remicade I highly recommend keeping up with all of the tests needed to track your progress and health. Just after what we all went through I like to give my story to let you know that the side effects do happen sometimes and you need not take them lightly. We almost waited to late to figure out what was wrong with my grand father and maybe still did. He has never fully recovered mainly because of the 30% loss of his lung function but we still have him hear today. Im not saying don't take this drug because like I said it did work when nothing else did but, like I said before, be very aware of the risks.