Is my treatment working?

[kleahy]

I have some questions about my treatment and am wondering if it is working the way it should be. I was diagnosed with WG last fall with a PR3 antibody of 318 plus nasal and ear symptoms. I started 10 mg methotrexate weekly and 30 mg prednisone which tapered down to 5 mg daily over 4 weeks. My PR3 score went down to 158. For the next 6 weeks I dropped the prednisone down to 2.5 mg daily. My PR3 score went down to 130. Although the score is falling, the inflammation in my ears has not gone away yet and I still experience a runny nose when I eat (Gustatory Rhinitis).

My rheumatologist thought we should bump up the MTX a bit so I am now on 15 mg weekly. Then, out of the blue my knee started hurting like it did when this all began last fall. I guess this is called a "flare"? I increased the pred back to 30/20/10 mg over the last couple of weeks. That seemed to fix the knee but the ears and nose seem unaffected.

I was just wondering if this was typical of other peoples' experiences with this type of treatment? Should I ask my rheumatologist to modify dosages or try new medications? Any insight would be much appreciated. Thanks.

Keith

[Pete]

Hi Keith,

It sounds like you had a flare with your joint pain. As for your ears, you may want to see an ENT who is familiar with our dumb disease. Good luck!

[gilders]

Can't comment on MTX as I can't have it due to renal failure.
Your pred dosages seem quite to me. Admittedly I'm overweight and perhaps you're slim which will effect the dosages of pred. But when I have a relapse I have all but once started with a full gram (1000mg) of IV prednisolone.

From my 19 years experience I'd say the "numbers" start to drop before the symptoms start to ease, so I wouldn't be overly worried about the ears and nose been "unaffected". If ears and nose start to become worse, then I'd be more concerned that the meds aren't doing their job.

[Dirty Don]

Hey Keith, I have similar damage. An ENT is a part of my team, but she couldn't really do much for me...fixed a deviated septum, tried to inflate my over deflated E tube but failed. She seemed to feel that she couldn't do much more for me. But...I got to see lots of color pics of my inner sanctum...er, sinus area....sheesh. Best to you.

[Alysia]

Hi Keith.
10mg MTX is not enough. how long are you on 15mg ? it takes about 6 weeks untill you can see the influence of it. and if it doesnt help, maybe you will have to take stronger meds, like CTX or better RTX.

[mishb]

I found that my ears cleared fairly well on 20mg pred.........or maybe it is because I am on 20mg MTX
I'm pretty sure it's from the pred though.

Unfortunately, without the sinus washes/steaming, my nose was no different on the MTX or pred.

I definitely think that 2.5mg pred, so soon, is not enough to keep the wegs dog asleep

[darl-p]

Keith,
I had the leg and knee pain as a 1st symptom It was diagnosed as Polymyalgia rheumatica. When I have a "flare" this is where the pain is and they up my prednisone to 80 mg for a few days and then slowly back off. The runny nose is something I learned to live with. Since I live in the damp northwest I just thought it went with the territory, then I discovered it went with the Wegeners territory. Keep on top of it and push for check-up when you think something is not right.

[Deborah T]

Greetings KLeahy - I tried MTX and 30mg qd Pred. w/no improvement. Just completed 4 weekly IV doses of RTX ... My crp level went from 38 to 9 with last weeks labs, still waiting on anca and myeloperoxidase levels.... my crp is down but
my rt facial pain, severe rt ear pain and intermittent rt arm pain continues. Not sure what's up with that. I guess I was expecting miracles already. Holding the MTX and decreasing Prednisone to 15mg/d. My nose runs all the time, and I have
an annoying whistle-sound when I breath through my nose from the hold in my nasal septum. I was scared to death to go on the RTX, but the treatments weren't so bad, just wiped me out. May want to ask your MD about that?
Blessings - Deborah T