Just an update on my situation.

[Rose Cozzette]

I'm curious about the normal flare-up protocol with Prednisone...If a Weggie flares-up and gets another round of RTX - how much pred, if any, are they typically placed on? For suture flare-ups I wouldn't mind the RTX infusions...it's the pred I can't stand the thought of.

yah. like Phil said, it is so individual. I never had to go back on rtx but have had to go up on preds for short term and then start to go down again. frustrating but cant be helped. we have to go on how the labs show and how we feel.

[jmmilliorn]

yah. like Phil said, it is so individual. I never had to go back on rtx but have had to go up on preds for short term and then start to go down again. frustrating but cant be helped. we have to go on how the labs show and how we feel.

I was wondering the same thing as Phil. I couldn't take MTX or AZA, but maybe if I have more symptoms I can take RTX infusions again. Wonder what the pred dose would be. Surely I wouldn't have to go back to 60mg again. I hope.

[norcalian]

That's the thing...I was on 80 mg of pred for six weeks at the beginning of my treatment (I think it stayed that way that long because of my sudden kidney involvement after the hospital). Last time I met with my rheumy, he made it sound as though I would probably be doing RTX every couple of years to handle flares...he compared it to his RA patients. He said that he thought CTX would bring a more lasting remission...but it was a harsh way to go. So if that is true for me (and with the variability of this disease, who knows for sure) I don't mind doing the RTX treatments, but I would not want to go back on high doses of pred every time...to me, that would make doing a round of CTX for a more lasting remission worth it. But it sounds like from what Phil is saying that as long as we catch the inflammation early, perhaps if there is pred included in the treatment it probably won't be to the degree that I am doing it now (I'm still at 50 mg/d).

[JanW]

Honestly, I think that while your rheumy may think that ctx provides a more lasting remission than rtx, studies haven't proven this out. If anything because ctx has been used longer, there are more people who can say, "I was in remission for 12 years after taking ctx." but in studies both drugs have proved equally effective.

[Rose Cozzette]

I was wondering the same thing as Phil. I couldn't take MTX or AZA, but maybe if I have more symptoms I can take RTX infusions again. Wonder what the pred dose would be. Surely I wouldn't have to go back to 60mg again. I hope.

from my experience the increase in preds is temporary, just a day or so, and then go down to a lesser dose, for me 25 and then 10 the second time, and then start the decrease again. it is harmful to the body to stay on high doses of preds, other problems emerge that are as life threatening as the WG. so I figure I would rather not add any other into the mess.

[Rose Cozzette]

Honestly, I think that while your rheumy may think that ctx provides a more lasting remission than rtx, studies haven't proven this out. If anything because ctx has been used longer, there are more people who can say, "I was in remission for 12 years after taking ctx." but in studies both drugs have proved equally effective.

all of these heavy duty drugs do some good but if taken too long are worse than the disease. I do prefer quality of life before quantity if the drug is going to cause me to be miserable in ways that mean more incapacitation than I am already experiencing.

[Chris G]

So, Mike - what are they going to do about your jaw? Did I read it correctly? There's a wg calcification causing your jaw problem?

[jmmilliorn]

So, Mike - what are they going to do about your jaw? Did I read it correctly? There's a wg calcification causing your jaw problem?

Well it took a month of physical therapy, but I finally got the jaw unlocked and back to normal. Unfortunately, I still have more dental work to have done, and I'm afraid it will happen again. The doctor that I went to see about the muscle trismus said that because I'm on coumadin for the blood clot in the leg, the jaw muscle probably got a big bruise from the shots the dentist gave me. My arms bruise during the night sometime and I'm not that rough a sleeper.

[jmmilliorn]

I got a call today from Dr. Villa Forte's assistant. She said my latest monthly blood test showed a decrease in both white and red blood cell counts. Until now, my red blood cell counts have been gradually climbing and I was encouraged that my anemia was getting better since the Rituximab I took in April and May. I don't recall any mention of my white blood cell counts before this. I have felt extra tired lately, but I assumed it was because I'm tapering off prednisone 1 mg/week. Down to 5mg this week. Haven't been on any chemo since my allergic reaction to Imuran in early July. Not sure what's going on. I have an appointment at the CC next Friday, the 19th, and they are going to do another blood test then. I guess I'll just be curious till then.

[Aunnie]

Hi J.Mike,

I haven't been on this chat for a long while,but I found your story interesting.
I'll try to give my Weg story(Readera Digest )version.
Dx'd in 2007,Prenisone since then,can't get below 7mg after many tries.I've tried Methotrexate,Cytoxan,Imuran,Cellcept and haven't been able to get into remission .I started RTX last Sept 2010,2 infusions each time.Again in March and am due again in Sept.I felt last fall that RTX helped(I have 80 mg pred. while being infused).
Since being Dx'd in 2007 I've always had SOB,I went to aPulmonary Spec and had all the breathing tests,all normal.
This spring I had major stomach surgery(Nissen Fundaplication and hiatal hernia repair).Soon after surgery I had SOB badly,my standing heartrate was 140.Readmitted and started on Atenolol,after many heart tests,all normal,AND the bottom line is the SOB(shortness of breath) IS caused by WEG or Granulomatosis Polyangitis.
I take 50 mg Atenolol daily and I can walk up stairs and not feel winded,yes it's another drug and another DR(Cardiologist)but it feels good not to be SOB most of the time.

Good luck to you and your WEG symptoms and I hope RTX helps you more.

Regards,Aunnie