Anyone in Canada on Cimzia.

[Crohn's 35]

I was just wondering if anyone from Canada is on Cimzia. Are you on it from clinical testing, compassionate use or your insurance is coving it. My Gi says it is still not FDA approved here, and hard to get. Even thought last year he was going to try... but we heard nothing.

This is my last resort, I have been on Remicade (highly allergic) and Humira was great for about 2 months and stopped working or never got into a couple of weeks without a flare.

Please let me know if you are on it. Thanks.

 

[biobabe]

Cimzia is now in clinical trials, for Crohn's disease, in Canada. On Sept 1, 2009 Health Canada approved Cimzia for rheumatoid arthritis. Hopefully, it won't be too long before they approve it for IBD.

 

[Crohn's 35]

That is strange that it can be used or arthritis patience but not Crohn's. I realize our FDA is very strict. Still I should think a doctor should be able to prescribe it, I have arthritis too but not the reason I want to try Cimzia.

It is my last option. My Gi says it is very hard to get, and even used as a compassionate use is difficult. Back to the drawing board of meds.

Thank you for the information I appreicate it!

 

[Crohn's 35]

Bumping this up.

 

[glum chump]

Hi Pen:

I have the same issue as you---highly allergic to Remicade and Humira stopped working for me. I was on a drug trial for Ustekinumab (Stelara) and it worked for me, but since it was only a Phase 2 trial, it is nowhere near being released. It is used approved for use for people with psoriasis, but not IBD yet.

What my doctor told me about trying to get me on Stelara (and he said the same thing when I asked him about Cimzia) is that he would be willing to write me an "off-label" prescription. However, the costs for both these drugs are really high and there's no means for paying for it. I have extended health benefits and I've written (and appealed) through my insurance company, but they basically told me to take a hike (I think they said this after they finished laughing!). My doctor also tried to make the case to Health Canada on compassionate grounds and they, too, said no. Since I was on the drug trial, I've also asked the company that makes Stelara, but they've also said no.

Other than shaking my fists at all of them, I'm at a loss as to what to do until Health Canada makes a move in the 'right' direction.

Let me know if you have any luck on your end...I'd be very interested because at this point, my GI wants me in pronto for an ileostomy and I'm in avoidance mode!

Kismet

 

[Crohn's 35]

Thank you so much for responding! When I was seeing my Gi after Humira failed, I mentioned to him about Cimzia, at first he had no clue. Then checking it out he tried to find out from his Mount Sinai buddy doctor about Cimzia and there was clinical trials but I missed the boat.. He tried with compassionate use too, but to no avail. I was doing so well that past 3 months and out of no where it started up again :ywow:. So I called Humira and they said to either contact the pharmacy I had at that time or my Gi, they can't give me the stats. I am just trying to research all I can before I bug my Gi again. I am the only one of his patients that wont respond to meds. I tried to get my gp to talk to another gi but they all figure surgery will be down the road. I am not that bad and really dont want that , but I do want a quality of life, havent had remission since 2003, my second botched surgery. Well I will call my pharmacy and then try to squeeze in a quickie appt with my Gi, right now I dont see him til June I think.

I am not going to have surgery... I will fight this damn disease! Let me know if you get any info on Cimzia, I am trying... thanks.

 

[glum chump]

Yep, I've been trying to avoid surgery at all costs and have enrolled in drug trials and tried everything I could in order to avoid it. When my GI wrote to Health Canada about Compassionate Release through the Special Access Programme, they agreed that my case was "serious" enough, but said that I still had the option of surgery. Grrr.

I've also wanted to try out Rifaximin in combination but it too isn't available in Canada. I totally agree with you...I want to have quality of life as well and have been in a 'severe' flare since 2005. I live as a recluse and can't even risk taking our dog for a walk around the block. It's no way to live and so I don't know that I have any choices but to get surgery at this point. And this is why I hope you have more success than I did and maybe I could get my GI to intervene in the same way yours does .

In the meantime, if I find any info on Cimzia in Canada, I will pass it along to you.

Kismet

 

[Crohn's 35]

I was and still have VSL#3 and apparently that and Rifaximin is supposed to be a great combo for UC but not extensive or conclusive results for Crohns. Funny , the drugs we need we can't get. Have you ever had a resection and if so how much and where?

 

[glum chump]

No, Pen, I haven't had any surgery. I'm terrified of surgery! My GI has been talking about surgery on and off for over five years now, but is really respectful of the fact that it is a huge decision that only I can make. I have really appreciated his point of view.

My fear around surgery is that something will get botched and I'll end up with new/different issues than before the surgery. And I'm in the camp of "the devil you know rather than the devil you don't." I've gone and read a lot of the postings and experiences of people in the Stoma Club and I'm somewhat reassured by how many people have found surgery to be a lifesaver for them. I just need to mentally and emotionally get to a place of acceptance. At the end of the day, what I'm really scared of is the epidural. I've had many spinal taps for MS and have had really bad experiences with it, so the idea of one more needle in my spinal area just makes me shiver and shake!

 

[DMS]

Sorry Pen - don't want to hijack your thread but. . .
Glum Chump have you tried LDN? You talk about MS as well as Crohn's and LDN has some good results for both.

Also, just something I was wondering about, LDN is not approved for Crohn's (like Cimzia) why does extended health pay for LDN?
Also Cypro and Flagyl for a Crohn's related abscess, also not FDA approved - but also paid for by extended health. Is it because the Cimzia is so much more expensive that your extended health refuses?
Just curious.

 

[Crohn's 35]

Hey DMS highjack away, I always want to be a part of a learning process, good or bad. I too asked my Gi and he was going to give me LDN but he did a double take and I didnt question it. My motto is everything happens for a reason. Also through the years of me being on here, I just didn't see enough evidence it works. By both male and female. It is not expensive, but I know one of the sides is hallucinations? No thanks.

Glum chump, I know about epidurals they don't work on me, tried a few times and different hospitals and docs. And true, the shiver and shake, I get that. My first surgery was laproscopic resection of the Ileum area 1ft and one week prior and post, and wished back then I looked after myself more... maybe my second one might not have been needed. But seeing as my crystal ball is in the shop, don't want to do anything drastic either.

 

[glum chump]

Hey DMS:

Yes, I tried LDN, particularly for MS. Unfortunately, it made caused involuntary leg spasms, even though I started on a fairly low dose. My neurologist took me off it, and I haven't had tried it since. In terms of the drugs, I'm not sure how it works in other parts of Canada, but in BC, Pharmacare has what it calls "Limited Coverage Drug Program". Drugs that fit this criteria are considered to not be the first line of therapies, or to have low cost alternatives. Drugs under this program require a "Special Authority"---your doctor has to fill in a form, it is reviewed by the medical staff at Pharmacare and then given approval. Insurance companies follow the Pharmacare route. When I went on Remicade, my drug company refused to pay for it until it had a copy of the Special Authority saying that it had been refused.

I noticed that you're in BC, DMS, so in case you're interested in terms of which drugs have Limited Coverage, you can access it here: http://www.health.gov.bc.ca/pharmacare/sa/criteria/restricted/restrictedtable.html

Pen: what an ordeal! Your resections sound hellish. I know what you mean about looking after oneself more---at this point, I wonder about how successful I'll be with surgery given that I'm not very strong, highly anemic despite iron infusions, and my inflammation and infection markers are sky high (despite taking antibiotics!). Oh, and I think my crystal ball fell to the ground and smashed to bits when I was 2 .

 

[DMS]

thanks for the explanation, I wasn't sure how that worked. Interesting, I saw that Cipro was on that list, but we weren't questioned when my son was put on it. Again, just trying to understand how it all works.

Sorry that you had a bad response to LDN, would have been nice for you if it had worked.

Pen, I think hallucinations are at higher doses. Vivid dreams are at lower doses, my son had a few of those, but they were all quite funny and were gone within a week's time.
Have you looked into quick release Wellbutrin - it would also be off label, but it is a TNF inhibitor and some Crohn's sufferer's have had good luck with it.
I hope you find something that works for your soon.

 

[glum chump]

DMS: I think in terms of Cipro, the Cipro that requires Special Authority are different from the ones prescribed for Crohn's. The ones that require SA are Cipro ear drops and Cipro Ophthalmic for some sort of eye disorders and need to be prescribed by an ophthamologist.

Yes, I was really excited when I got the LDN and the research I'd done on it. And I was surprised how I didn't have to fight my neurologist on it!

 

[Crohnadian]

I had been on Cimzia 2+ years ago (and I live in Canada). My GI asked the GOV'T on conditional acceptance basis and I got it. Didn't help at all though. Totally non-responsive.

 

[Crohn's 35]

Thanks for the info. Which doesn't surprise me that is didnt work. Since I cant take Remi and Humira wasnt working my Gi figured it wouldnt work. Too bad.

Thanks for letting me know. I stopped even considering it now but who knows... got nothing to lose if I do try it , if it ever gets here.