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Shoul I still go for Remicade?

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Ulcerative Colitis
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Posted 2/22/2011 5:39 PM (GMT 0)
Got an email from my GI saying she is putting in the request for Remicade. The infusion clinic would reach out to me soon with the schedule. So here we go. Really keeping my fingers crossed. I am feeling much better about it now after all the wonderful feedback/advice from you folks. Can't thank you guys enough.
Posted 2/22/2011 5:43 PM (GMT 0)
Good luck to you! Remember to bring some good magazines/books, headphones or portable dvd player and some snacks. It's kind of a nice time out -- I always figured nobody was ever going to come looking for me there so it was pretty peaceful! I even got some great naps in. And, the warm blankets are the best.

Posted 2/22/2011 6:26 PM (GMT 0)
I would think that if you start flaring after you get off the prednisone you should consider Remicade. I would think that tapering would give you a good hint on your decision.
Posted 2/22/2011 6:58 PM (GMT 0)

Disneynut66 said...
Are you on 40 mg? If so, you may want to drop by only 5 mg. Sometimes when you drop too quickly everything comes right back. My gi said to drop 5 mg every week. I wish you good health and a successful taper.

I second this. All my GIs have had me taper by 5 mg increments when using prednisone. Perhaps you'd like to follow up with your doctor. If tapering by 10 mg is safe, though, perhaps I will try it in the future if I ever have to use prednisone, again. Prednisone is the type of drug we all want to get off sooner, and not later.

I wish you well on your soon-to-come Remicade treatment. Let's cross our fingers and say our prayers that you will respond well to this drug.
Posted 2/22/2011 8:25 PM (GMT 0)
Drop to 30mg is what my GI has asked me. I remember the only other time I was on 40mg (in 2005) I had tapered to 20mg - 2 weeks - 10mg and I was fine. Then again, in 2006 I went from 20mg to 10 mg and had some symptoms back. Had to taper by 5mg every 2 weeks. Right now, I just want to see what happens with this taper considering I am getting on Remicade. I am hoping Remicade does the heavy lifting and I can get off Pred fast. Basically I am thinking of staying with this taper even if I get some symptoms and see if Remicade takes care of it. How else would I know how effective Remicade is for me, right?
Posted 2/23/2011 12:14 AM (GMT 0)
Well, that's an interesting perspective... but you'll know whether or not Remicade works for you by simply seeing how good you feel over the long-term. If you're asymptomatic for months after you discontinue the prednisone, it's a good sign. You'll only have real certainty that Remicade works well for you if you have a strong and long-term remission of about a year, at a minimum, in my opinion. Even without any treatment, many sufferers of UC achieve sporadic "remissions"... that's when they run in here and tell us all about how green-tea "cured" them because they've been feeling alright for a few months!!!

In my view, it's best to play things conservatively. If you know that reducing your prednisone dose by 10 mg increments puts you at risk for a resumption of symptoms, based on your own personal experience, then why risk it again? Reduce the administration of prednisone more gradually and hopefully Remicade will do the "heavy lifting" and carry you forward in cruise-control over the long-term.

I hope Remicade becomes the golden ticket you need, at least for awhile! Get better soon!
Posted 2/28/2011 9:56 PM (GMT 0)

SMfromCA said...
Drop to 30mg is what my GI has asked me. I remember the only other time I was on 40mg (in 2005) I had tapered to 20mg - 2 weeks - 10mg and I was fine. Then again, in 2006 I went from 20mg to 10 mg and had some symptoms back. Had to taper by 5mg every 2 weeks. Right now, I just want to see what happens with this taper considering I am getting on Remicade. I am hoping Remicade does the heavy lifting and I can get off Pred fast. Basically I am thinking of staying with this taper even if I get some symptoms and see if Remicade takes care of it. How else would I know how effective Remicade is for me, right?

SMfromCA,

I saw in the spinach and SS thread you said:

SMfromCA said...
I have mixed equal parts psyllium seed powder (bought on internet), flaxseed powder (ground at home), ..stops the symptoms with in 24 hours, every time.

Now I notice your on prednisone. My question is did your seed remedy stop working for you ?

Thanks
Posted 3/1/2011 6:02 PM (GMT 0)
aguywithuc, After I was in remission, I stopped taking the flax-psyllium-benefiber mixture. My current flare started with occasional bleeding and I didn't think much of it. I never really got heavy D, just more and more bleeding. I tried getting back on the powder, but by then the ulcers were pretty bad and I have severe pain with the bleeding. and had to go back on Pred. I was off Pred for 3 years before this flare. The flax seed powder doesn't work for me when the symptoms are severe. What actually is working for me right now is one teaspoon of Slippery Elm powder (bought from internet) and one teaspoon of psyllium powder 2 times a day. Stir in half a glass of water, or mix with some home made yogurt and wash down with a glass of water. Of-course, 40mg pred should, and probably was taking care of the symptoms by itself, but I am tapering very aggressively without any symptoms. Dropped to 30 mg last Tuesday, and dropped to 20mg yesterday with no symptoms. I did eat some spinach yesterday, just to be sure (a bag of frozen spinach, cook covered with garlic powder and some 1/2 & 1/2 and toss in some shredded cheese at the end)
Posted 3/2/2011 2:27 AM (GMT 0)

SMfromCA said...
aguywithuc, After I was in remission, I stopped taking the flax-psyllium-benefiber mixture. My current flare started with occasional bleeding and I didn't think much of it. I never really got heavy D, just more and more bleeding. I tried getting back on the powder, but by then the ulcers were pretty bad and I have severe pain with the bleeding. and had to go back on Pred. I was off Pred for 3 years before this flare. The flax seed powder doesn't work for me when the symptoms are severe. What actually is working for me right now is one teaspoon of Slippery Elm powder (bought from internet) and one teaspoon of psyllium powder 2 times a day. Stir in half a glass of water, or mix with some home made yogurt and wash down with a glass of water. Of-course, 40mg pred should, and probably was taking care of the symptoms by itself, but I am tapering very aggressively without any symptoms. Dropped to 30 mg last Tuesday, and dropped to 20mg yesterday with no symptoms. I did eat some spinach yesterday, just to be sure (a bag of frozen spinach, cook covered with garlic powder and some 1/2 & 1/2 and toss in some shredded cheese at the end)

Been there and dropped too fast, your body makes around 8mg - be sure to go twice as slowly from there just as your dropping twice as fast now.
Posted 3/2/2011 3:10 PM (GMT 0)
Good luck with the Remicade! Think positive!
I wish I had learned about it years ago, and stopped the roller coaster of flares in my life.
My GI says none of her patients have experienced serious side effects from being on Remicade, only an allergic reaction on occasion.
Posted 3/2/2011 4:20 PM (GMT 0)
For all of you on Remicade I think what you really need to watch is the amount of time you are on it. Not to scare anyone but I know of someone who has been on it for 10 years and was recently diagnosed with terminal lung cancer. Lung cancer has been associated with Remicade but not much is reported on it. No one can say for sure that Remicade caused her lung cancer but we do know she was never a smoker and never lived with one. As always, stay informed on your drug choices.

Sue
Posted 3/2/2011 6:03 PM (GMT 0)
That is exactly what concerns me. My understanding is that Remicade partially shuts down your immune system and the body is slow to respond against serious conditions such as cancer and TB. So this kind of brings us back to my original question. What should I do next? On one end of the spectrum, I can choose not to go with Remicade for now, as I don't have any symptoms anymore. I can wait till the next flare and then start with Remicade. The benefit would be to avoid the risk associated with Remicade. Other end of the spectrum is the surgery, that will fix the whole thing (possibly) without exposing the rest of my body to any risk. The middle ground is to start of Remicade even though I don't have any symptoms and see if I can get off all the other medications and then see how long I need to stay on Remicade. That's what I am thinking I should do.
Posted 3/9/2011 8:51 PM (GMT 0)
First Remicade infusion scheduled for tomorrow. Two more infusions 2 week apart. Keeping my fingers crossed..

Post Edited (SMfromCA) : 3/9/2011 3:17:38 PM (GMT-7)

Posted 3/9/2011 9:23 PM (GMT 0)

Gavriel said...
Even without any treatment, many sufferers of UC achieve sporadic "remissions"... that's when they run in here and tell us all about how green-tea "cured" them because they've been feeling alright for a few months!!!

It doesn't work like that.

Alternative treatments work for me, and they work for a lot of other people. It's as simple as that.
Posted 3/9/2011 9:29 PM (GMT 0)

SMfromCA said...
The middle ground is to start of Remicade even though I don't have any symptoms and see if I can get off all the other medications and then see how long I need to stay on Remicade. That's what I am thinking I should do.

I don't know much about people's experiences using Remicade, but as far as I know the medicine treats the symptoms of the disease, not the cause of the disease. Have you talked with your GI as to how long he/she expects you to be on Remicade?
Posted 3/9/2011 10:36 PM (GMT 0)
Well, my GI told me that it depends on how your body responds to it. Not much info, I know. But I guess that is the truth. You are absolutely right about all the medicines treat only the symptoms. There is no one treatment for the cause of the disease. I try pro-biotics, psylliun powder, Slippery elm powder, spinach & sunflower seed, cabbage * carrot juice.... Collectively they are keeping my symptoms down.
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