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Seems like the Remicade ride is officially over....

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Ulcerative Colitis
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Posted 6/14/2011 11:39 PM (GMT 0)
For those of you that have followed my story, I had my 5th dose (second double-dose) of Remicade last week. I have been on prednisone for the past 6 weeks because the remi wasn't cutting it. One week since the double dose, and not much has improved. The blood seemed to go away for a couple of days, but came back today. I am still going 9-12x per day and that is with the 25mg of prednisone and the Remicade.

It is just so frustrating because I really think this is just the bottom end. I think the Remicade is helping higher up since much of the stool is formed. I tried rectal meds in the past, and they didn't help - I just continued to get worse.

I have to call my Dr tomorrow with an update. I will ask him about rectal meds again, LDN, antibiotic therapy and nicotine therapy. Humira is not an option for me as it is not approved for UC in Canada. Last time we spoke, he said he was going to arrange a consultation with a surgeon, but I haven't heard back on that yet.

And, to top it off, even if the Remicade had worked at that higher dose, the government cut off my funding for it because they say that a dose that high is not warranted with UC.

Sigh. So frustrating.
Posted 6/15/2011 1:32 AM (GMT 0)
:( Sorry you are having such a tough time. I know how horrid Prednisone is and I hope you can get off of it soon. Hang in there
Posted 6/15/2011 5:25 AM (GMT 0)
aww panda, I am very sorry that you're not feeling better. I wish you could find some more options. Could you get your GI to say that you have possible Chron's to allow for Humira to be tried?

Have you considered some other alternatives, a few people were trying letchin capsules.
https://www.healingwell.com/community/default.aspx?f=38&m=2008262

I think antibiotics are definitely worth a try!

What about MTX as an immunosupressant?

I have even seen people on the Chron's board mention Wellbutrin helping UC & Chron's disease...

Whatever you choose to try, I am sure you will find happiness. Surgery could give you your life back, no more frequency or urgency, that would be nice. No more worries about your next flare up.

 

Posted 6/15/2011 1:40 PM (GMT 0)
Thanks.

Notsosicklygirl - My Dr doesn't think that Humira will work for me. He felt that if this double-dose of Remicade didn't work, then Humira was unlikely to help.

I am not sure about MTX. I haven't asked about that one. I'll put it on my list.

I really like my Dr, and I honestly think if he thought anything else would work, he would try it. He is very much a "anything before surgery" kind of guy. I will still ask about the alternatives though.

"Worry about your next flare up" - I wish I could get to this point. I have only had one flare up - the same one since dx.

Mustlovedogs - I am definitely feeling more side effects of the prednisone this time around, but I believe it is the only thing keeping me even remotely stable - if you can call this stable. As much as I would like to get off of it, it is the only thing that works.

I've left a message for my Dr. We'll see what he says today.
Posted 6/15/2011 1:52 PM (GMT 0)
I'm sorry to hear that- Humira is sort of losing it for me, too- I may see about going to once a week shots, but not sure... it's a lot of medicine! In some ways, you must feel some measure of relief- you have tried everything, aside from a few alternative therapies. Some of those therapies put me off- methotrexate, for one. I don't know, I'm in the same boat as you- considering surgery in a whole new light, you know? I see my GI the end of the month, not sure what we can try from this point on. He's never mentioned LDN- I may bring it up, not sure if I feel like going thru yet another med merry-go-round. Good luck, whatever happens.

Posted 6/15/2011 2:03 PM (GMT 0)
Gosh mom2panda, I'm so sorry you're going through this too.  We're not exactly in the same boat but some of it is similar.

Has your GI thought of putting you in the hospital or on IV pred to settle the whole system down? 

I'm trying to approach my healing with a multi level strategy...  Western meds, nutritionist, and visceral massage, along with lots of meditation and reading.  One good book I think is already helping is called "When the Body Says No... Understanding the Stress-Disease Connection" by Gabor Mate' MD.  It may already have mentioned here someplace, but he mentions UC on the first page!

Ultimately I'd love to see those of us interested in finding out how to make Western and alternative therapies work together, especially for people like me who haven't been able to find remission and whose disease seems to steadily worsen. 

I think we can heal, too.  I even found a Kaiser GI who was able to explain some of the digestive process in terms of stored trauma, WOW!

Healing is worth contemplating, and I believe it can happen!

Wishing you health,

potato

Posted 6/15/2011 2:26 PM (GMT 0)
I agree with potato. If you're going that many times then you should have some IV fluids and steroids in since you can get dehydrated pretty badly.
And about Humira, some UCers do better on Humira than Remicade after developing antibodies to Remicade. Just keep in mind all the time that everyone responds differently. No one knows.
Give LDN a try first if your GI prescribes it.

I got on Humira since yesterday to get into full remission, even though I'm basically at remission in terms of symptoms. I hope it works.

Don't give up mom2panda! Be more strict with what you're eating now since you are flaring really badly. I have not eaten any outside/processed food/beverages for almost three weeks now and it's definitely helping. I know you have tried every diet out there but maybe there's just one thing you might be eating/doing wrong, just want you to make sure.
I really wish you the best. We must keep trying while we can.
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