Shoul I still go for Remicade?

This is a difficult decision. I probably wouldn't want to start remicade if I were able to get into remission without it but I also think your GI is probably questioning whether you will be able to taper off prednisone without your symptoms returning. I think there is only one way to find out and if the symptoms do return, you could always consider remicade at that point in time. You could also try other medications like rectal and oral mesalamines or 6mp/imuran. I am not sure what you're taking or what you have tried in the past but you should probably speak to your GI and discuss all of the options available.

That's pretty much the boat I am in. Currently on pred taper 20 mg, down from 40mg. Remicade is my next step. I have already completed the TB test, Hep B test, and chest xray. Still passed blood even on 40 mg even though it was a lot less. Going to continue tapper a few more weeks and if I am still bleeding then call I will call my GI and start Remicade.

Good luck to you.

Remicade also healed my colon. I've been on it for five years, and will stay on it because if I'm too late getting my infusion I will start having some mild problems. But for the past three years I have had no ulcers and a perfect colonoscopy.

I tried Imuran some time back, but it didn't do much for me. I was on Asacol 3x3 daily before the flair.

Imuran is also much riskier, and much less effective, than Remicade. It's only advantage is that it's cheaper - so the insurance companies prefer that people try it before Remicade... which usually leads to longer suffering before trying to safer, more effective drug.

I have used Imuran in the past, with no results.

I am currently using Remicade and have been in remission for over two years.

Oh, do I know how you fee. I was diagnosed in March 2009, I had symptoms from the time I was 5 months pregnant with my third child and she was born in June 2008. I waited that long to see a doctor, it was so bad I started having accidents daily and was going no where. I had a scope and was told i had severe uc throught my whole colon. I was put on asacol and lialda, I'm allergic to both. I was then put on Imuran(6MP) and I'm allergic to that also. This was all before June 2009. I was put on pred for a month 20mg. and i was great within two days. I hardly went to the bathroom and felt great. I tapered off and I was going 10-15 times a day within days of being on 5 mg. I was put back on pred a week after I stopped it the first time and my symptoms went away again. I started remicade in July 2009 and started tapering off the pred in Nov. 2009 because I couldn't stand it anymore. I gained 50 pounds and I was soooo crabby. I would go off on any one and any thing. I also cried at everything and I still have to lose most of the weight. By the time I went off the pred in Nov. my symptoms were great. I would go and still do about 4 times a day and no accidents since starting the remicade and I have a life now. I have three kids i can't stay home. lol In march 2010 I had a scope and it showed my colon hardley healed at all. It was still severe throughout my whole colon. The doc wanted me to go off the remicade but I asked for more time because it was healing my colon alittle. I stayed on it and in Jan 2011 I had a scope and my left side is completely healed and my right has mild inflammation, oh they upped my dose from 5 kg to 7.5 kg every eight weeks. My threoy was I would try the 5 asa's and then the imuran etc. If that didn't work I would try remicade and humira, there is a new trial drug MLN 0002 and my doc wanted me to try this. I was scared to do that so if the time comes I will consider it. I will then do surgery. I have a 2 and a 1/2 year old and my thought was to buy more time until she was older because the surgery is long and ruff. I'm still scared on the remicade but I don't have a choice. I'm scared of surgery also. I don't like it either but we have uc and there is nothing we can do. I feel better knowing I tried everything before the remicade and if I need surgery(I've been told by numerous docs I will) I know I tried all meds before it. Also, I think it took my colon so long to heal because i was soooo bad before I started the remicade. I was told remicade doesn't give you cancer your immune system is low so if you are prone to develope it your body might not fight it off. I'm scared that cancer runs in my family. I worry about it but the longer I'm on it the more i'm like there is nothing I can do. I can't live like I did before.

I'm sorry this is so long. I'm hoping this will help you decide. If I were you I would try everything before the remicade and then I would try the remicade. I hope you find peace in your decision. UC sucks but we have it and these are the options we have. Oh, I was told 1 out of 1,500 get cancer while on it and I thought almost all of them were on imuran and remicade together, were young adult males. Best of luck.

 

I was in your exact shoes last spring, only my GI wanted me to try Imuran. I had come off a round of Prednisone about a month earlier, and though it had gotten rid of most of my symptoms, some slight pain and bleeding had continued and I was becoming anemic. Well, after researching the risks, I didn't like what I read about the drug. Things weren't that bad, so i decided to just stay on my normal course of Asacol, Rowasa, and VSL#3 and up the iron pills. I had the most perfect remission of my 10 year UC history in the summer. No blood or diarrhea and minimal pain. I was in pure bliss and thought I had beat the disease... ha ha.

Then September comes around and, boom, I am hit with the worst flare of my life. I was on a four-day backpacking trip, climbing peaks and feeling strong and vibrant when I started to feel very sick with UC symptoms on the last day of the trip. Ten days later I was in the hospital barely able to stand and having diarrhea 20-28 times a day. That is how quick it came on! A colonoscopy showed severe inflammation in a large portion of my colon (they couldn't scope the whole thing because it was too risky). After a week in the hospital, I was showing no signs of improvement on massive doses of streroids and was losing huge amounts of weight.

The doctors gave me the Remicade or surgery option (I no longer had enough time to try the more slow-acting Imuran). I sat there in my hospital bed researching Remicade and honestly didn't like what I saw. I didn't like the joint pain side effect listed, (I am very active person) or the possible connections to lupus and MS (my grandma died of MS). And of course the cancer risk, though small, didn't thrill me either. I actually felt strongly that surgery was a better choice for me than a lifetime of Remicade infusions every 8 weeks. I knew, however, that after losing 20% of my body weight in two weeks and being on huge doses of steroids, I was in no shape for an operation. I agreed to try 3 infusions of Remicade just to see what would happen and to hopefully buy me some time to heal, get strong again and make a good decision when I wasn't so sick. If the Remi didn't work in a week, the doctors said I would be sent to emergency surgery anyway. It was so tenuous for a while that the hospital surgeon started visiting me to explain the procedure. Yikes!

Fortunately, the Remi worked wonders and within another week, my flare had ended and I was out of the hospital. Problem was, around that same time I developed a horrible delayed reaction to it. It gave me excruciating joint pain... I mean severe-writhing around on the floor-crying in pain-unable to walk or function-no pain meds help-joint pain. I was taken off Remicade and my future infusions were cancelled. Fortunately, the joint pain left once Remicade got out of my system after about 6-8 weeks. In the meantime, I had a consultation with one of the top colorectal surgeons in our city and decided to have a permanent ileostomy. My surgery November went great and I feel SOOOOO good. It is like my body is rejoicing now that the UC is gone!

I guess the point of my story is that if you put off the choice now, you will likely have to face that same decision down the road... perhaps under less than ideal terms. And, trust me, it isn't a good decision to have to make when you are in a hospital bed facing the possibility of emergency surgery. Fortunately, I really lucked out and everything turned out great in the end. If you are willing to accept the risks of Remicade, there is no reason not to try it to see if it will work for you. Prednisone can be a horrible drug with risks during long-time use, and it sounds like you have been on it for a while. If you are absolutely opposed to the risks of the medications, realize that surgery is a good option if you don't improve as well... just go into it in good health and not in an emergency situation. Probably the worst option is being sick with UC all the time, being afraid of the strong drugs or surgery, and letting it ruin one's life.

The reason NSSG suggested you wait to taper and see if your symptoms return is that Prednisone is supposed to work as a "shock" treatment. Meaning, it shocks UC into remission and lets the user go back to normal maintenance meds. So, I totally disagree that waiting to see if you can push your UC into remission with prednisone and get back off of it onto 5ASA meds before you try Remicade is irresponsible. That's what Prednisone treatment is supposed to be and it DOES work for many people. We have quite a few folks here who have pushed their UC into remission with prednisone and been able to maintain w/o moving onto stronger drugs. It didn't work for me, it might not work for you but I think it IS worth a try. It does usually require a slow taper and can be bumpy. Totally up to you what you decide to do but it's not irresponsible to try this before you progress to Remicade.

Gavriel, what you are saying makes perfect sense. Surgery is irreversible. One should only consider that after trying all other options. Considering the fact that I am able to get out of my symptoms even without Remicade, surgery certainly sounds too drastic. I am requesting my GI to schedule for Remicade infusion. It's the risk associated with Remicade that concerns me, especially the lymphoma. The best case scenario: Remicade puts me in long tern remission. In the next 10 years there is some cure found that effectively puts me in a permanent remission. The worst case: Remicade works for 20 years and at the age of 62, I come down with lymphoma and Remicade stops working and I have to go through the surgery...... Darn it!! where did I put my crystal ball?

It's difficult to choose, I understand. For what it's worth, the risk an average person faces of developing lymphoma who lives in North America is between 7.2 and 9 out of 100 thousand persons (according to the WHO). I don't think the increased-risk faced by a Remicade-patients makes it much more significant. Ask your doctor what the increased risk is, or maybe that information is available online. Basically, the increased risk of lymphoma faced by those who use Remicade is neglible.

You are certainly feeling better on Prednisone, that is excellent news. Prednisone, however, is the most dangerous drug we UC-patients regularly use. One who is willing to use prednisone (virtually all of us when suffering greatly), should be willing to use Remicade as a treatment option for our health problem. I hope things stay well for you.

I agree with everything blueheron said. I was very sick from imuran, tried 6mp and it affected my liver so it was Remicade or surgery. My surgeon told me those with uc have a much lower success rate using it than chrons. I also knew even if it worked now, most likely in a few years it would stop working and I would have wasted those years. I wanted the j-pouch and the younger you are the better it works so I wanted to make sure I was a good candidate (I am 44). The cost was also a factor. For my surgery my total out of pocket will be $2700...for both surgeries.

I just had an appointment with my liver doctor...things are starting to improve. The best part of my appointment was when the nurse went over my long list of medications. Each time she asked me if I was still taking a medication I was able to say no. I almost cried. No more drugs, no more side effects from drugs, no more UC related ailments, no more pain. No regrets here.

If you do go the surgery route ever, you have some incredible doctors there. I think that's where Suebear got hers done and she is very happy many years and many hiking adventures later.

Thank You... Got an email back from my GI. I am going to drop the pred to 30mg from tomorrow and keep my fingers crossed. I guess at this point we just have to wait and watch. Whatever happens, no good getting worked up. Better to keep up the spirits and take this fight one day at a time. I will sure keep you all posted.