Running out of options

[Samantha Coral]

Hi everybody,

Ok so I was on Humira for about 18 months, and it worked great, until 4 months ago, and now I'm in full on flare and hating life (not actually but it sucks).

I've already tried Remicade and had a severe allergic reaction, so that's out.

My GI said I've exhausted all of my options and that the only thing I can do (other than surgery) is a clinical trial. I forget the name of the drug but I DO NOT want to do a clinical trial. And surgery's not an option because I'd need a colostomy and that's not happening.

I feel like there MUST be something else for me to try. Is it possible that I could break through Humira, but some more mainstream meds like ASA/Imuran could still be effective?

Does anyone know anything about holistic options?

I'm in Canada, I'm not sure if that matters for drug availability/approval.

Thanks in advance for any info (I'm kind of freaking out).

 

[KWalker]

Are those the only two medications you've been on is Humira and Remicade? I went from Remicade, to Humira and then to Methotrexate (injections work best) because Remicade and Humira stopped working and I went longer on meth. then I did the other two and didn't notice a decrease in effectiveness.

 

[Miss Underestimated]

I think I'd get another opinion, if that's possible for you.

 

[Manzyb]

I've taken both of those meds and Cimzia. I'm getting ready to start Tysabri. It is suppose to work great. Have you considered it?

 

[Samantha Coral]

I have been on Imuran, ASA, Prednisone, Humira and Remicade.

My doctor has never even told me about the other medicines you guys have just recommended! I feel like he's so far up his own ass in these clinical trials that he's not even looking out for my well being!

I'm trying to get second and third opinions but my current doctor's not making it easy to get any referrals.

I'm going to do some research on Methotrexate, Cimzia and Tysabri and bring those up to him on Wednesday to see what he says. He told me last time that my disease was too severe for any other Canadian approved meds. Are those all approved?

Thanks so much guys.

 

[glum chump]

Hey Samantha

I know how frustrating it is to be told that you're running out of options. Cimzia is not available in Canada for Crohn's use. Methotrexate is in the same family as Imuran. I'm not sure about Tysabri---I did take Tysabri for a while, but it is an approved treatment for MS in Canada, and I took it for my MS as opposed to Crohn's.

I'm not sure what your financial situation is, but if you have the money, you can ask your doctor to write you an "off-label" prescription for Cimzia and give it a try. Because it's not an approved drug for Crohn's in Canada, health care plans won't approve them (I had written to Health Canada and didn't get a positive response).

I had failed all drugs, including all available drug trials. Unlike you, my GI wasn't involved in any clinical trials, so he didn't push me towards them. I didn't want to go on clinical trials, either, but didn't know what else to do. One clinical trial worked really well for me, while the other had horrendous effects.

I had a permanent ileostomy done almost a year ago, and it was the best possible thing for me. I just couldn't wait for some of the other drugs to be approved, and I was down to 90 pounds and incontinent by the time I had my surgery. So, it was the only route available to me, and I took it.

If you are able to get other opinions, that would be really good. Just because Imuran didn't work for you doesn't mean that Methotrexate won't work.

Good luck, and I hope your appointment goes well.

Kismet

 

[David]

Hi Samantha,

I'm sorry you're having trouble

Out of curiosity, why are you against the idea of a clinical trial? Worried about potential side effects or don't like the idea of an unproven drug or something else?

If a Canadian clinical trial came about where the drug/procedure had little to no toxicity/side effects and was showing high remission rates, would you try it?

I wish you well.

 

[PaulPhoenix]

Hi there,

How about trying Elemental diet?

Paul

 

[Samantha Coral]

I don't want to do the clinical trial because I would have to wait 8 weeks until there's no humira in my system to start the screening process. I would need numerous tests and colonoscopies ans blood/stool samples and this will take another month. If I'm accepted I may get a placebo. Even if I do get real drug, it may not even work and it could have bad side effects. Not to mention the clinical trial is 1 1/2 Hours from where I live and id be required to travel multiple times a week. I have no car and rely on my partner or family to come get me as drive me there. Other than that I'm not comfortable with the idea of doing a clinical trial at all lol


Paul is elemental diet testing/ modifying what you eat to try to control symptoms? I've cut out dairy, corn products, raw veggies and anything with seeds , but I haven't gone any further than that. Do you think that would be effective with someone who has advanced and active disease?

Thanks again so much

 

[PaulPhoenix]

Follow the hyperlink in my original message for more info. In short it's special prs-digested drinks which replace food for a couple of weeks and (hopefully) induce remission. There's a treatment section on here for it. Good luck!