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Remicade not working, back on pred, crushed.

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Posted 8/12/2009 11:24 PM (GMT 0)
Today was a chat with my GI and we're stopping the remicade (after 3 doses with little improvement) and starting back on prednisone. I just sobbed when I hung up the phone, I am so disappointed that the remi isn't going to work and that Plan B is my old friend Pred.

I asked about surgery and he said that we needed to "exhaust all options."

I guess I was totally unprepared for the remi to be declared a failure so quickly.

I am just absolutely crushed.
Posted 8/13/2009 12:04 AM (GMT 0)
Hi Amy,

I know exactly how you feel. I used Remicade in the past and had a reaction the second time around and they deemed it an allergy for me. Fortunately at that time I came out of my flare and did not have to go back on Prednisione. Unfortunately, two years later, I am back in a major flare up again and my GI put me back on the steroids. I was also sobbing because of all of the side effects and the fact that I don't believe it helps all that much- unless the dose is super high. I also asked about surgery and he wanted to hold off and try Humira because it is a different type of bioligic from Remicade. I realized that my GI would also "exhaust all medical options" before considering surgery because he is the one who will be treating me as opposed to the surgeon. I quickly set up an appointment with a surgeon and learned that I am a candidate and that is the decision that he and I made together. My j pouch surgery is scheduled for Oct 5 and I could not be happier. Maybe it's worth it to make a consulation with a surgeon to tell him your story. I am also a mommy of 2 sweet little girls and have had UC for the past 10 years- diagnosed in college. I am done with flare ups and am extremely excited to have my colon taken out!
Posted 8/13/2009 12:24 AM (GMT 0)
I would think Remicade not working is exhausting all options, at least it is according to my GI. Prednisone is NOT meant for long term use. I was on it for two full years and it left me with arthritis and osteopenia. I had a heckuva time getting off of it due to steroid dependence.

I've been on Remicade for a little over two years now, every six weeks for the past year. While I tolerate it well and it has helped a great deal, I still have a lot of inflammation in the final few centimeters (and toward the fifth and sixth week after my last infusion I start getting the urgency again and have near misses and accidents) and my GI recommended surgery. Timing up to me, but I am meeting with a surgeon this coming Monday to explore that option. GI says since the medications not getting me all the way into remission he doesn't think the risk of any long term side effects are worth where the meds have gotten me. The disease and the meds are in a stand-off.

I'm just sick of being sick and have come to terms with the thought of the surgery, although if you had asked me a year or two ago if I'd ever have the surgery I would have adamantly said NO. So, when you are ready to explore that option you should seek a surgeon. If you need a referral and your GI won't give you one maybe you need a new GI.

Meesh
Posted 8/13/2009 1:20 AM (GMT 0)

Amy,

I think Nutz and Meesh make some good points.  Pred is not a maintenance drug; if you have been on pred for more than 4 months you are prednisone dependent.  If the immunosuppressants and biologics have failed you have reached the end of treatment options. I also know it's hard to wrap your mind around surgery so while you and your GI work out the next plan it would be good for you to get a surgical consultation.  Meeting with a surgeon does not commit you to surgery but educates you about the process in the event you ever have to choose it.

I chose surgery because I was steroid dependent and came to the decision that I was never going to gain remission.  That was 8 years ago and I have never regretted it. 

Sue

Posted 8/13/2009 1:57 AM (GMT 0)
What about the other biologics? Humira, Methotrexate, 6mp, Imuran, Enbrel, Cizmia? What about combinations of 2, a lot of people do that, me being one of them, I use Humira and Methotrexate. Didnt your doctors try to just give you a high dose of prednisone the 2 days prior and day of the Remicade infusion with benadryl? That works well they've found out when people have minor issues with it, or need to be pre-medicated to avoid certain things?
Posted 8/13/2009 2:27 AM (GMT 0)
I think it's up to you to decide when it's time for surgery; that decision is NOT for your GI to make for you. ((hugs))
Posted 8/13/2009 4:00 AM (GMT 0)
Thanks so much for the support guys. Uffdah. I needed to hear some clear thinking!
I thought I was prepared for the remicade to be discontinued--of course I had noticed it wasn't working. But thinking you are prepared and being prepared are two different things, I have discovered!

I am getting used to the idea of surgery and am so inspired by the people on this board who have had it. But I have thought about my situation a lot tonight, and I have always gotten very good and considerate care from my dr. He is at Mayo Clinic and I have seen him for 12 years. I will try to trust him on this and "exhaust my options" by taking the pred again. I had been on pred since last December with three unsuccessful taper attempts (most recent in July).

Maybe this time the 80 mg dose instead of my usual 60 mg will kick my butt into remission.
Posted 8/13/2009 4:23 AM (GMT 0)
Maybe you can try humira or get into a study that will provide medication that will help you? Worst case scenerio, at least you know surgery will cure this problem. I would definitely consider surgery if nothing else was working for me. Better to suffer through a tough recovery for a few months than to be running to the toilet for the rest of your life. Best of luck getting into remission. Have you tried diet? fecal transplantation? probiotics? herbal anti-inflammatory pills? stool tests?
Posted 8/13/2009 1:58 PM (GMT 0)
Thanks notsosicklygirl. My doctor has never mentioned humira. I wonder if I should ask him about it? I have tried diet to an extent, I did the whole gluten free for 6 months and I did the full SCD for three. I haven't tried fecal transplantation (eek) or any probiotics. There are still a lot of options for me, it sounds like. Which is a good thing!
Posted 8/13/2009 2:55 PM (GMT 0)
Yeah, you could still try the Humira. This stuff I am on now will probably be out in next few years I suppose. It would provide another alternative like remi and humira. There's always something in the pipeline, its just a matter of staying well enough to hold out and try it.

80 mg pred, I would be bouncin off the walls. Have you been on the hydrocortisone enemas?
Posted 8/13/2009 3:11 PM (GMT 0)
Humira and Remicade are very similar, or even the same, aren't they? I wanted Humira because of the convenience, but I couldn't get my insurance to approve it. Fortunately Remicade is working, I would also have been devastated if it didn't. I can tell my doc was ready to talk about surgery if it didn't, once I started making noise about doing something more aggressive and not just putting up with active disease for the rest of my life. I never complained much, so she thought I was OK with the status quo. Now I wish I had surgery a long time ago, when I had a different career situation. It's been interesting to hear about how the surgery has worked out well for so many...
Posted 8/13/2009 3:20 PM (GMT 0)
Remicade and Humira are pretty much the same (both anti-TNF, I believe), but they are just enough different that sometimes Humira will work when Remicade doesn't. I couldn't begin to explain why, though!
Posted 8/13/2009 3:24 PM (GMT 0)
I think the difference between Humira and Remicade is the type of antibodies (human vs mice) the drugs use. In the end though, it does work by inhibiting the same TNF from what I have read. However that doesn't mean that Humira can't work for you! I think you may have to wait a couple months before you can switch though...
Posted 8/13/2009 3:35 PM (GMT 0)
From what I understand, NiRo is correct - Remicade is built with mice proteins and Humira with human proteins. I was reacting harshly to Remicade and if I hadn't gotten it under control with Benadryl, then I'd be on Humira.
Posted 8/13/2009 4:09 PM (GMT 0)
I'm in the same boat, Remicade didn't work after three infusions. Then increased 6mp to 100mg, white cell count went too low, and reduced back to 75mg. Now waiting for my white cell count to get back to normal to start abatacept trial. It's a phase 3 trial drug already approved for RA. Thinking about surgery also, and dr. tells me cyclosporine is also an option.
Posted 8/13/2009 8:49 PM (GMT 0)
It had taken 4-5 doses of Remi before I was able to see any relief from UC.

Personally, I think your doctor should give it another go..my GI has advised that my case isn't all that uncommon.

If my GI's only solution was more Pred, I'd get a new GI, or say goodbye to the colon. Prednisone did terrible things to me.
Posted 8/18/2009 5:05 PM (GMT 0)
Hi Amywaffle,
Have you been on any other meds besides Pred? Pred is usually a last resort for a UC sufferer.
I take Imuran have you tried this med yet. Its worked for me. No blood in 3 yrs. I still have flare ups but Its better than being on Pred.
There are tons of other meds to try and medicated enema's.

I hope you find the right combo to make you feel somewhat better.
Hang in there ok :-)
Posted 8/18/2009 5:12 PM (GMT 0)
Amy, it looks as if you've been through the 5-ASA's, sulfasalazine, immunosuppressants (imuran, 6-MP) and Remi without relief. I'd say you probably have exhausted the alternatives.

Humira would be the next drug to try, but it isn't yet FDA-approved for UC, so many health insurance policies consider it experimental and will not cover the cost, which is similar to the cost of Remicade.

Please consider a visit with a well-qualified colorectal surgeon. Whatever you decide to do, I believe it's important for you to know about all of your alternatives.
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