Methotrexate not an option :-(

[Edmonton Rob]

I saw my pulmy today. We are still trying to get all of the funding/approvals for Rituxan. My insurance company has agreed to cover the cost of the drug (After the Province of Alberta declined...) however, they do not cover the cost of actually administering it...WTF??? Luckily, my doctor attended a conference this past weekend in Vancouver where he met with a rep from the company that makes the drug. She has given him the info and methods to apply to the company itself for the additional funding required. Fingers crossed.

We then discussed the option of Methotrexate in lieu of the Rituxan. He explained that while MTX is an effective drug for treating Wegs, it typically only works effectively when a single organ system has been affected. So in my case where my heart, lungs, spleen, kidneys, sinuses and bladder all suffered the onslaught of the disease, a regime of MTX would be undertreating my condition. Therefore, I'm stuck waiting for all of the approvals to come through. UGH...

On a side note, my doc also agreed to refer my to a rheumatologist here in town who actually has experience treating Wegs. (Thanks Marta:thumbsup:)

I suppose all in all today was a good day.


Thoughts?

[marta]

Right on Rob,

You'll love her. And if he can't get it, she will.

He is right that the RTX and CTX are used as the 'big guns' dealing with a systemic flare.... but many of us on here are on MTX and/or Imuran (my maintenance drug) once the big guns are used. The thing that concerns me is that you're not on anything while you have disease activity in your body. This disease can turn on you quite quickly and unexpectedly. Please stay on top of him. Also once you get your referral through, give Dr. Y's assistant a call and tell her you are in a flare situation, have just been referred, and need her help quickly. She will get you what you need. She so knows this disease, it's almost a privilege to be under her care. I would ask your doc about making sure there is an immune suppressant as part of the treatment. Before they started using the steroid/chemo combo, up to 90% of patients died within 6-8 months of diagnosis. Using one or the other doesn't work. It has to be a combo of the two. Talk to him about it, because it is not so good to not treat Vasculitis correctly. We just buried a friend here in Jasper a couple of weeks ago because of this very important knowledge gap in the medical profession.

I think not treating with the more mellow ones because the disease is systemic is an error, in my humble, uneducated opinion. I believe all WG is systemic. If you have sweats, fatigue, and symptoms throughout the body, it's systemic, and I'm pretty sure that covers all of us, yet many of us are using MTX and/or AZA (Imuran) for maintenance.

Once you see Dr. Y, it'll all come together.

I realized today, after reading the article in the paper about my friend Michelle (the one who just passed,) that other than rheumatologists, all other docs only deal with symptoms of the disease. Rheumies are the ONLY ones who deal with the disease itself. The others are also very afraid to use the correct treatment protocol because it comes with so many risks, so they leave patients untreated to protect themselves. Just opinions based on too many observations and anecdotal patient stories.

I hope this helps. This crew gave me the strength to drop my old rheumy and find the best one ever (did I mention she came out to Jasper with her family for PJ Day? YUp, that's how cool she is.)

Ask questions. Make him work for his money. ;)

Take care buddy.


As I said, I'm on Imuran. I like it a lot because it has no side effects like MTX. Only catch is you need the right enzymes to break it down, and there are some people who are missing them.