From Prednisone to Remicade- When do you make the leap?

Well I've been on prednisone for over 2.5 months now and it's only just been keeping me in remission since the end of December. I was also having extreme joint pain and bowel pain and was on T3's, morphine and Oxycontin at times for the pain. I am on a waiting list for approval for Remicade, hoping that it will help.

My only suggestions are to hold in there and believe that you'll get better. There are so many things you can try and some may work and some may make you worse. In my opinion all you can do is try and see how it goes, hope for the best and don't get too down when the worst comes out.

I was put on Imuran in September to try to help control my UC and it ended up making me very sick, hospitalization and just too many complications to name. Not to scare you, because believe it or not my UC was very much in control, just turns out the rest of my body couldn't deal with the Imuran.

Good luck and hopefully you'll be feeling better soon!

Manhattan, I think you need to make a decison. Either you're going to go with your GIs advice or you're going to go your own route. I think Remicade would be your quickest potential method of getting into remission. It would potentially get you back on your feet very quickly. Another thing worth trying that your GI probably won't offer is something like fecal transplant or LDN.

Has your GI ever mentioned antibiotics? I tried some when I was in your boat a year or so ago. I wasn't responding to pred quickly and I had already been up and down on it for months, I don't know if it helped but I felt better knowing I gave it my everything before giving into immunosupression. I went for 6mp over Remicade because I was willing to wait to get things under control. 6mp took forever to help me and it was very difficult because I wasn't feeling good but now I am doing great. I like 6mp becasue it is a pill but it can take months to help and if you're sick, that's a long time.

I was on 6mp for a year and I was still having a lot of issues with symptoms. Finally I started an antidepressant for migraines and around the same time, things stabilized. If you're stressed, I recommend you try speaking to someone and getting treatment. I have to wonder if my stress level has been reduced from the antidpepressant and that helped my UC.

What did he mean make the year long committment? Why is 6mp/Remicade a year long committment? Both treatments are long-term and shouldn't be discontinued if they are working for you.

I agree with bananagirl, after you're on pred for a while, you will welcome anything over the side effects of the prednisone. Try not to let it get to that point.

Thank you for all the feedback. You have all made some very good points.

I agree that at this point Remicade seems like a quick fix but it seems that the course of treatment of the inital doses and follow up infusions make it a long year of recovery. Very scary but very appealing at the same time.

Bananagirl, how long were you on Pred and at what dose before Remicade?

Notsosicklygirl-How long did you take 6mp before you got better? I thought that you took both Remicade & 6mp together?

Right now I would love to just be able to walk out the front door for an hour without having the urge to go. My quality of life has completely diminished in the past 3 weeks and I have been in bed or in the bathroom trying to heal. I think fighting the pain and anxiousness each week on getting better is not helping. I just need to let the meds work and take the painkillers so I can sleep off the pain and the prednisone side effects.

My daughter's first birthday is in one month and I am worried that I will not be able to plan a party for her let alone participate in it :(

Thanks bananagirl. It is good to know there is hope. Did you feel you were getting better on 40mg of Pred for 4 weeks? Were you bleeding? Rectal pain? I do feel that I am going in the right direction so I am not sure if I should just be patient or if I should just go for the Remicade for the relief and get my life back. Each day there is a little bit of progress but I am not sure if can endure a long fight into remission or if I should just go for something stronger.

Gosh, it took months before I saw results with 6mp. I was not one of the lucky ones who started feeling better within a few weeks. My situation isn't common. I had slightly elevated liver enzymes and my WBC dropped. I was unable to increase the dose to where I needed it to be to feel better. It was a struggle for me, others have a much easier time with the drug. You can use it with Remicade but you can use either drug alone. The reason they combine the 2 drugs is because people on 6mp are less likely to build up antibodies to Remicade, allowing it to be useful for a longer period of time.

Can you take prednisone and remicade at the same time ?? Thanks x

Wow! Looking back on my original post over 2 years ago is interesting. I am happy to say that Remicade put me into remission very quickly. It has really helped me. After the inital 2 loading doses (week 0 & week 2) I was able to get off the dreaded prednisone for good and never looked back. I am now 45 pounds lighter, 1 BM a day with no blood. That last flare lasted for 8 months straight with over 25 uncontrollable bloody D a day. I was depressed and had almost lost hope because the pred was not working. Diet changes, teas, L glutamine, chia seeds etc did not have an impact on my UC.

I started Remicade in July of 2012 and got my life back. Now I go in for infusions every 8 weeks for a few hours. I treat it as a spa treatment for my colon. I leave a little tired but with a bounce in my step. If anyone has questions about Remicade I am happy to help. I really gave me my life back.

reminds me....gotta change my signature :)

Manhattan Mamma - do you know how long you can stay on Remicade for?

It is my next stop if the mercaptopurine doesn't work (steroids don't work for me and low TPMT for azathioprine (Imuran) so I had side effects, with liver blood results going off).

After ten years of on / off struggling I want my life back - Remicade, surgery, or fecal transplantation - don't care as long as I don't get any other chronic illnesses and can get on with life.

UCyousee,

Remicade has been in wide use for the last 10 years and people have done very well on it for the long term. Mount Sinai in NYC has a state of the art facility that opened up last year where the infusion rooms are private, with recliners, private TV and even lunch! The nurses are super friendly, helpful and gentle. One of the nurses was part of the initial study when Remicade was first being tested 10 years ago and is thrilled that this drug has helped so many people. I feel very lucky to have found my new GI and to be in this kind of care.

At first I was hesitant about trying an immunosuppresant but honestly, it gave me my life back. Once a month I go into the out patient clinic for a few hours and that is it. No more blood, sudden urges and waking in the middle of the night running for the bathroom. No more predisone weight gain, mood swings or acne. No more enemas.

If 5mg per kg does not work some do well on 10mg per kg. Talk to your doctor about any questions you may have.

Good luck to you!