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HannahLeigh89 posted:
So Thursday I had an appointment with my doctor. I knew the Humira and methotrexate hadn't been working as well as I had hoped because I have still been having pain and some other problems. She decided that we should do another scope to see just how badly things had progressed. I got to watch this one, as well as the one in July, and the difference is quite scary. The few little ulcers that she found in July are still there, but they are much larger and angrier looking. There's one ulcer in my pouch that is very large and bleeding quite a bit, and the rest of my intestine that we saw is eaten up pretty badly. Tons of tiny little ulcers everywhere.

In July, she upped my medication from Humira twice a month to every week to try to get those few ulcers cleared up, and as I said, that didn't work. She said that we could go back to Remicade, but it probably wouldn't work because I didn't have that great of results from it the first time, and now my body has most likely built up antibodies to make it even less useful. Generally Imuran would be prescribed with it to help reduce the problem from the antibodies, but I can't take Imuran. The medication she wants to try me on is called Tysabri. I had never heard of it, but it's apparently some pretty scary stuff. It's used mostly for MS, but it's approved here for Crohn's also. Europe hasn't approved it for Crohn's because they say that the risk to a person with Crohn's is too great in comparison to the benefit they would receive.

I'm really quite afraid of this new drug, but I have some time to decide because there are tons of hoops you have to jump through to even have it prescribed to you. Most doctors can't prescribe it. My doctor has said that because of my response to all the other medications, this is probably my last shot. Tysabri is used as a last resort type thing, but she also said that in about 30% of patients, the reward is tremendous. The risk just happens to be that in about 0.1% of patient's prescribed the drug, they develop a brain infection that generally results in death within six months. She said that nobody has ever developed the infection while being on it for less than a year, and she wants to try me on it for about four months and then do another scope to see if it's cleared anything up. If my scope is clear and I'm feeling better, she said then we could decide it if was worth the risk of being on it long term.

I'm scared because if it doesn't work, I'm screwed, and if it does work, I'm still screwed. How do you decide between disabling stomach pain and becoming mentally handicapped or dying? And what happens after the four months, either way? I know my risk goes way up if I decide to use it long term, but like I said, I'm kind of damned if I do and damned if I don't. I can't just NOT treat the Crohn's, because of the risk of losing my pouch. My risk of colon or rectal cancer is gone, but if my pouch gets too damaged, I'll lose it and have a permanent ostomy. And I don't want that. I love my pouch. Plus, with how severe my disease is getting, even with treatment, I can't imagine without treatment. I may not be responding well to it, but it has to be helping a little bit.

I just need some insight and some opinions. And any information on Tysabri or other options any of you have heard of. Besides dieting. I'm past the point of diet controlling this. Thanks guys, and sorry my post is so long. I'm just freaking out.
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arbob5 responded:
On my dear Hannah, if it's not one thing it's another. I feel so bad and wish I knew something about what you're facing, but I don't. I just want you to know that I am praying for you and am devastated with what you're going through. Everything had been going so well for you and now this.

I know someone on this site will more than likely have some information for you on this. I certainly hope so.

Again, you're in my prayers. Please remember that, ok?
 
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jaimem92 replied to arbob5's response:
Hannah, I'm sorry you have to deal with this stuff. We all think being on Prednisone and Remicade is scary. I don't have much to say to you. I wish I did. But I hope the best for you. I would say go for it, I mean is life really worth being sick all the time? I mean my sick is one thing- that's tolerable, but to the point of it being completely debilitating. I don't know. I just always tell myself, that there's no pain in heaven. Someday it will be better and I'll have a perfect body that won't have Crohn's..... It helps. I'll be praying for you.
 
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LunaNatasha responded:
Hannah,

I'm incredibly sorry that you are at such a cross roads. I'm empathetic towards your situation because I'm stuck between a rock and a hard place as well. I know you'll get a lot of advice on this board, but in the end, it's the decision you can live with that is the right one to make. I keep praying about the decisions that I need to make about my health, and I'll certainly pray about yours. I wish I knew more about Tysabri, or something to help you. You are in my thoughts!
 
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OyWithThePoodlesAlready responded:
Hannah, I'm so sorry. I can't even begin to imagine what it must be like to be there. I'm sorry I've been away for a while, are you still in school?

it really seems like you're presented with a gamble - the tysabri seems like it offers the possibly get your quality of life back but you also run the risk of loosing everything. and 0.1% never seemed like a large # until you put it in that context

on the other hand, playing it safe isn't a win either. I can't imagine the frustration of all the crap you had to go through to get your pouch and then to loose it. Is there also long term disease progression to consider beyond loosing your pouch? I have no idea how these things work, and I'm so sorry you have to figure it out. When you read about Chron's you see the possibility for it to make you this sick, but to see you go through it is so frustrating and so unreal

I hope you can find peace about a decision somehow

take care
~Ali
 
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HannahLeigh89 responded:
So nobody has ever heard of it then?
 
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arbob5 replied to HannahLeigh89's response:
All of the information I found were from MS patients, and this drug appears to have had tremendously positive results. I can certainly understand your hesitation and negative thoughts about this drug. Where to go to find out more on the reactions with your situation, I just don't really know.

ANYONE OUT THERE: PLEASE SHARE ANY INFO TO SHARE WITH HANNAH REGARDING TYSABRI.
 
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CalGal37 responded:
Hannah, I can give you the information on this drug from a medical data base if that would help? It's concerns the use of the drug in Crohn's disease. It's facts and figures.............
 
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HannahLeigh89 replied to CalGal37's response:
That might be helpful. I just don't really even know what I'm looking for. But I'm still very uncomfortable with it and I'm not sure where to go from here.
 
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CalGal37 replied to HannahLeigh89's response:
From UpToDate: Natalizumab was shown to be superior to placebo in a meta-analysis (5 trials). Overall, patients treated with the drug were less likely to fail to achieve remission than patients treated with placebo. Two of the trials included in the meta-analysis:

1. The largest trial, "ENACT-1", included a total of 905 patients with active Crohn's disease who were randomly assigned to Natalizumab (300 mg) or placebo at weeks 0, 4, and 8. Response (defined by a decrease in the Crohn's Disease Activity Index of at least 70 points at week 10), was similar to placebo (56 vs 49 percent). Post-hoc analysis of the results in those with elevated CRP at baseline showed efficacy for Natalizumab compared with placebo.

2. The 339 responders to Natalizumab were enrolled in a follow-up trial, "ENACT-2". There was random reassignment to receive 300 mg of Natalizumab or placebo every four weeks through week 56. Patients receiving Natalizumab had significantly higher rates of sustained response (61 vs 28 percent) and remission (44 vs 26 percent) through week 36, as well as higher discontinuation rates of glucocorticoids.

A second trial, "ENCORE", included 509 patients (moderate-to-severe active Crohn's disease; active inflammation (CRP greaten than 2.87 mg/L)). Patients were randomly assigned to Natalizumab (300 mg) or placebo at weeks 0, 4, and 8. Primary endpoint: induction of a response, defined as a greater-or-equal-to 70 point reduction in the CDAI at week 8 and sustained through week 12. Response was observed significantly more often in patients assigned to Natalizumab (48 vs. 32 percent). Sustained remission (CDAI less than150) was observed significantly more often with Natalizumab (26 vs 16 percent). Frequency and types of adverse events were similar between treatment groups.

Serious adverse events occurred at a similar rate to the placebo arm in two controlled trials. However, in an open-label extension, one patient with Crohn's disease on monotherapy with Natalizumab died (JC virus-associated progressive multifocal leukoencephalopathy (PML)). Two other case reports described an association between Natalizumab and PML in patients with M.S. treated with Natalizumab and interferon beta-1a. Latent JC virus infection and viral shedding are common in immunosuppressed patients with Crohn's disease, but risk factors of JC-related disease are unclear.

Marketing of Natalizumab was suspended in February 2005 as a result, but was subsequently resumed for M.S. At least 76 additional cases of PML have occurred in those with M.S. since the drug was reintroduced (20 percent mortality rate; high degree of disability among survivors).


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