What's Next - After Remicade...

[farfrmnormal]

Hi all!

I'm new to the forum and have come here to hopefully find some guidance/help. I am a 29 y/o female from Ontario Canada.

In 2008 I was FINALLY diagnosed with Crohn's. I say finally, because it took doctors 16 years to diagnose me with the disease and actually "try" and do something about it. The doctor that originally looked after me mucked things up royally by misdiagnosing the type of Crohn's I have and he put me on medication that ultimately made things worse. In September of 2009 I experienced my first fistula (that apparently had been in existence for at least year and went undiagnosed) and developed a large perianal abscess. I lost 50lbs and became bed ridden for 6 months. After switching GI's he immediately put me on Remicade (thank heavens for group benefits) and I have been great ever since.

Long story short - My drug coverage changed 3 months ago and there is now an annual cap on my prescription coverage and my Remicade will no longer be covered. I am not eligible for the EAP (Section 8) coverage Ontario offers because my doctor chose Remicade for my treatments because he knew immunosuppressants would not work for me.

So here I am not knowing what comes next for me. Anyone been in my situation before?

I've been doing some research - LDN, Cimzia, Methotrexate... I just wish I could stay on the remicade.

 

[ameslouise]

Hi Normal and welcome!

That's a shame that you need to change your treatment options because of insurance. Is there any assistance offered by the Remi mfr like there is for Humira? Maybe worth looking into.

Take a poke around the forum -there's lots of knowledgeable folks and information about all sorts of treatment options.

- Amy

 

[Crohn's 35]

HI there, there is Trillium, check that out, it may help you. Humira would be a good choice and not so expensive, Cimzia is not here yet and no approvals. Humira also has a co-pay you could check out their site. Methotrexate can be paid for if you get your shots in an outpatient clinic, but I tried it twice and did squat for me and made me nauseated and headaches. Hope you can get something, other than Prednisone, cheap but not a good choice. Good luck!

 

[CrohnsNYC]

I have lots of peri-anal issues and am on Humira and Methotrexate. I have not had any side effects and these drugs have kept the fistulas and abscesses away! I hope you can work with your doctor and your new insurance company to get the right combination and stay feeling well. Good luck.

Beth

 

[farfrmnormal]

Hi All!

Thanks for your responses - I'm not eligible for Trillium (EAP/Section 8) because I have not been on any immunosuppressants. Hopefully something will come up.

 

[MADiMarc]

Hi. Sorry to hear about the insurance troubles. I know here in the states you can get assistance directly from the manufacturer if you cannot pay. You have to fill out more forms than you can imagine, but they will render aid. As I am not in Canada, I do not know about the system there. If the doctor says you can do Humira, I know they help many people in your situation (I have helped 4 people fill ounthe forms). There is a humira sub forum on is site if you want to poke around. There is also a Remecaid club. I hope you find your answers. No one should have to suffer.
Good luck,
Michele

 

[CDDad]

Hi Far from,
Don't have any good advice - but welcome to the forum. It is a shame that you have to switch off a drug that is working for you.

 

[redlocks]

Hey form Oregon, I too am having issues with $$$ and this disease. I know that the makers of Humira have help.... Check out their web site.

 

[Jennjenn]

Hi welcome

I am not familiar with the Canadian health system but I can relate to having difficulty in getting approval for meds because of drug coverage restrictions. I hope everything works out for you. When I used to be on Remicade though here in the US I would get my treatment at the hospital and they would cover what insurance would not through the hospital programs because the treatment was so expensive.

 

[Franko]

farfrom

I will soon be in the same boat.

I will be retireing end of this year. After i leave work there will be
no more coverage for me on Remicade. It will be out of my pocket.

Was giving this some thought. I live in Ontario and maybe its time i
got my MPP involved and work on getting this drug covered under OHIP.

I have heard , but not confirmed that Remicade in Alberta and BC are
covered by their Govenment health plans. I understand its better to cover the drug than pay for hospital stays and cost of a operation.

Might be worth a try.

As anyone else explored this through their MPP ?

txs, Franko

 

[farfrmnormal]

Still working through the process. Franko - I have been in contact with my local MPP and he hasn't done anything for me. I will get through this and figure out a way to get this covered for me and my fellow Crohnies!

 

[vonfunk]

I would ask your doctor to attempt imuran, if only to get it out of the way. If it doesn't work then you've gone through the paces. Because you have CD, Trillium will cover Humira. However those with UC, like myself, Remicade is the last stop before surgery.

 

[HospitalPatient]

As for "What's Next after Remicade?" - I am not familiar with Canada's Prescription Drug Policies but from a Crohn's Disease perspective - and only because I have been through this path of "TNF" based drugs - I started on Remicade but grew Allergic to it and had to find an alternative. That's how I found "Humira" and that worked GREAT for about 18 months or so until I developed an Asthma-like Side Effect so I had to stop it - and the Breathing issues disappeared. The next step was "Cimzia" - which has worked GREAT for the past 18 months or so.

These injection-based drugs are all predicated on the aforementioned "TNF" approach that Researchers found to be extremely effective in treating Crohn's Disease. The differences in these three (3) Drugs generally has to do with the Amount/Concentration of Human Proteins they contain since the Researchers first discovered this application to Crohn's Disease by experimenting on Mice and thus the first such TNF drug, i.e. Remicade, had a high concentration of "Mice" Proteins whereas the Latest such TNF drug has a Higher Concentration of more Human Proteins.

The significance of this Mice-to-Human Protein Concentration has to do with REDUCING Allergic Reactions in those Patients like myself who grow allergic or resistant to these TNF drugs.

I hope this helped.

 

[farfrmnormal]

Unfortunately, I am not sure if Cimzia is available for use with CD/UC in Canada. I am going to speak with my doctor next Monday and see what my options are.

As for the last stop before Surgery - I have Crohn's colitis and my main problem is rectal issues and Remicade is my last stitch effort before surgery (Unless something else works). Hopefully, the doctor will have some other suggestions to keep me pain free and somewhat healthy.