Intro

[Dirty Don]

Welcome Victoria, glad you made your way here. As Phil said it is curious to go straight to MTX...CTX or RTX is pretty standard for the first wave.

I've found it interesting also that my rheumy put me straight onto pred (of course) & MTX...since I've met all of you and heard the stories, MTX doesn't seem like the 'first line of defense' for most of the people. On the other hand, it's working...hmmmm

[drz]

I've found it interesting also that my rheumy put me straight onto pred (of course) & MTX...since I've met all of you and heard the stories, MTX doesn't seem like the 'first line of defense' for most of the people. On the other hand, it's working...hmmmm

I have heard of others having similar experience for various reasons. Some times they are saving the bigger guns for a more serious flare or the patient has some issues that preclude use of the other drugs, especially CTX. Those of us with kidney damage can't use MTX so it is not an option for some of us.

[ArlaMo]

Welcome, though sorry you had to find us all this way. There is a wealth of information here and many wonderful people.

[Victoriaitsnosecret]

Thanks, everyone for the replies. Its good to hear from folks dealing with the same thing. I do have a rheumatoid doctor. Mark Robbins. He was recommended by my pulmonologist. Since I have limited Wegeners and it's not very aggressive right now he chose to put me on methotrexate first. It is successful in getting people into remission but does have more chance of relapse in the long run. But it's far less toxic. I feel like I've been getting quality care. My lung doc had actually called it the first day but I don't think he could get anyone else to agree. I told him after he should have got up all in their faces and been like "told ya! " (I also have a questionable sense of humor.) I also make the joke of being a "meth head" but a lot of people don't think that's too funny. (I shoot meth(otrexate) in my leg. My first time doing that was hilarious. I shot it up into the air. It was in my hair. But I finally managed. The doctors are really positive that this will go away with treatment. Might come back later. I'm sort of waiting for the other shoe to drop hoping it won't but can't seem to help it.
Victoria

[pberggren1]

Please keep in contact at least once a week Victoria to let us know of your progress. I still feel that mtx may not be enough for you. And the term limited WG is not something that Wegs docs use.

[Victoriaitsnosecret]

It's been about 2 months since this all started. My nose has been stuffy on and off for about 2 years. I'm wondering will I stay the same? Will it get worse/ can it get worse on the meds? Are there actual Wegener's specialists or just docs that specialize in vascular disease? I know Mass General in Boston has a well known vasculitis clinic. I have an HMO. It's hard to get a referral outside of their practice. They are associated with all the major hospitals. How often should I be seeing someone? As of now I think I'm seeing the Rheumatoid doc and ENT doc once a month. My PCP every other month and will now see my pulmonologist every 3 months.

[renidrag]

Mass General has Dr. John Stone as head of Rheumatology and is also listed on the Vasculitis Homepage. I saw him twice but due to insurance issues could not continue. So I ended up with BMC and am very happy there. I see my PCP every two months and have an open line to Rheumy. If I need him he will see me immediately. In March I can return to the lung doctor that diagnosed me, again due to insurance reasons. I suspect I'll see him once every three months or as needed. With our disease changes can occur rapidly and these specialists know that and will make themselves available. I have blood done every three months.
Dale

[Victoriaitsnosecret]

Thank you. I will check him out. I will have to see if my insuranc will allow it. How long have you had Wegeners?

[Victoriaitsnosecret]

Thank you Phil. I will check in. I'm still trying to sort this all out to. Its a lot to wrap your head around and then there is the rest of your life to pay attention to or try.

[pberggren1]

This is such a major learning curve it is enough to drive one to drink.