Life Threatening Only?

[NikkiNicole]

I JUST got an email back from the Rheumatologist about my request for the full cocktail of drugs. He was quite mean, actually. He explained that Cytoxan is ONLY for those of us who have life threatening symptoms, eye inflammation, nasal damage, renal malfunction, etc.
I'm obviously not there yet, I know. I'm ahead of the game.
However, I've been told several times that Prednisone alone isn't enough. He wants me to up it to 60mg a day. OK, fine.
He says if this doesn't help with the pain and misery, Cytoxan isn't going to do anything to stop it either.

Well, I guess I up my Prednisone tomorrow. I guess I'm Wegener's Extremely Light, eh? I mean, it's a good thing. Presently, my life is not threatened. I guess I just let it go then ...

[drz]

I JUST got an email back from the Rheumatologist about my request for the full cocktail of drugs. He was quite mean, actually. He explained that Cytoxan is ONLY for those of us who have life threatening symptoms, eye inflammation, nasal damage, renal malfunction, etc.
I'm obviously not there yet, I know. I'm ahead of the game.
However, I've been told several times that Prednisone alone isn't enough. He wants me to up it to 60mg a day. OK, fine.
He says if this doesn't help with the pain and misery, Cytoxan isn't going to do anything to stop it either.

Well, I guess I up my Prednisone tomorrow. I guess I'm Wegener's Extremely Light, eh? I mean, it's a good thing. Presently, my life is not threatened. I guess I just let it go then ...

Milder cases are usually treated with MTX or generic Imuran (azathioprine) and prednsione. Cytoxan is more effective but it is usually used only in more severe cases because it also more toxic and the risk of using it is justified in a severe case. RTX is less toxic than CTX but considered just as effective as CTX but is much more expensive and can only be given by IV while CTX is usually given orally.

A good link on everything from an overview to diagnosis and treatment and management of GPA is the one on emedicine:

Medscape: Medscape Access (http://emedicine.medscape.com/article/332622-overview)

[HopeinTN]

Yes, not needing the stronger drugs is good, but only if you are given this advice from a Weg's specialist. Forgive me for asking, and probably not the first time I've asked you, but are seeing a specialist or at the least can you have your doc consult with a specialist?

Hang in there!

[annekat]

This doc does not seem to understand what he is dealing with. Does he not agree that you have Wegener's? If so, he owes it to you to find out what the correct treatment is for your case, and prednisone by itself is NOT it! The basic information on how to treat Wegs is available to ANYONE, not just doctors, as in the link drz shared above. My doc is not a WG specialist, but when my dx was confirmed, he immediately prescribed CTX and prednisone, since I had lung involvement along with the sinus stuff. Perhaps you don't need CTX or RTX but can get by with MTX or Imuran..... you need something besides prednisone! Unless, like Hope in TN says, someone has determined you can't take or don't need those drugs, which would be very unusual. He is guilty of malpractice, in my opinion. You REALLY need a second opinion, preferably from a recognized specialist. It is hard to imagine that someone in the SF Bay Area would be stuck with such substandard treatment for Wegs.

[Debbie C]

I agree with everyone else...find another dr. , Nikki..I think he is full of crap..I think just about everyone on here,when first dxed. was put on ctx and pred and maybe bactrim. Life threating or not. AND don't ever settle for a dr. being mean to you, they do not have this desease and know what you are going thru so stand strong and fight for yourself. Get rid of the jerk

[pberggren1]

Nikki, get your family doc to consult with one of the VF consultants right away. They do it for free.

[Alysia]

Hi Nikki,
I only want to echo what everybody here is telling you. we are with you. stay strong. dont give up. find another doc and sue this one !

[drz]

If for medical reasons you can't take any of usual four drugs and some people can't, there are some second tier drugs that can be helpful even if they are not as effective as the usual ones.

If you have GPA it seems unusual to us here that your doctor wouldn't include something other than prednisone. It is helpful as the link above indicated:
Prednisone (http://reference.medscape.com/drug/prednisone-intensol-342747)Prednisone is used as an immunosuppressant in the treatment of autoimmune disorders and vasculitis. By reversing increased capillary permeability and suppressing polymorphonuclear neutrophil (PMN) activity, it may decrease inflammation.

But the usual mainstay of treatment is:

The mainstay of treatment for Wegener granulomatosis (WG) is a combination of corticosteroids and cytotoxic agents.
Treatment should be tailored to appropriately treat WG manifestations while minimizing long-term toxicities to the patient.