Anyone else on 30 mg pred/day for 3 years ?

[brianli]

Hello everyone-diagnosed 3 years ago and damage limited to sinuses (no lung or kidney) but when I go below 30 mg pred the bloody/runny nose, ringing ears, swollen eyes etc all get nasty. Unable to get into remission. Tried rituxan once , cellcept and methotrexate......seeing others with WORSE symptoms posting much lower pred dosage. Anyone else stuck at 30 mg or more?

[annekat]

Hello everyone-diagnosed 3 years ago and damage limited to sinuses (no lung or kidney) but when I go below 30 mg pred the bloody/runny nose, ringing ears, swollen eyes etc all get nasty. Unable to get into remission. Tried rituxan once , cellcept and methotrexate......seeing others with WORSE symptoms posting much lower pred dosage. Anyone else stuck at 30 mg or more?

Nope, not stuck at 30mg., more like 10mg. for me. I wonder if it means you need a higher dose of your main immunosuppressant, like MTX, if you are on one. I hope someone in your same situation will answer.

[me2]

I would look at it the same as Anne. I think at that high of a dose there should be a search for a main imunosuppressant that allows a lowering of the dose of pred. I just saw my doctor last week and because I had to up my dose from 12 mg, where I had been for some time, up to 20mg he lectured me on how prednisone is killing me. What I should have told him was "Yeah, but not today it isn't"

He meant well and his point was well taken. Prednisone is only to be relied upon while looking for better control with other medications. Saying that is easy but it can end up being a long and complicated process. Still the goal should always to be to reduce the prednisone.

And on the subject of Rituxan. I had to use it several times to start seeing benefit. It seems to work fast for some people but not for others.

[mishb]

Hi Brian and welcome.

Things should be getting a little better by now.
I second what Anne and me2 have said.
You mention that you tried RTX once, MTX and cellcept........what happened that you only had one RTX and what about the other two.
Are you actually on an immunosuppresant now? You really need to be, if you aren't.

I hope you can find some answers here and we welcome any further questions, big or small.

Take care and ........

[brianli]

Michelle- thanks for taking time to respond- yes, I have been on the maximum dose of all immunosupressors since diagnosed in dec 2010. the rituxan was administered over 4 weeks but was described as "one dose". been taking methotrexate for last 2 months, at first 25 mg pills (6) orally each week, switched to taking 0.6 milliliter under skin once per week last week in case it helps absorbtion of med. took max dose of cellcept for over a year. wegs is limited to sinuses but when i try to go below 30 mg pred the worsening of symptoms makes me worry it might damage ears, eyes, spread to lungs, kidneys, etc.
Msin question for group is anyone else stuck at such a high dose of pred ? Brian

[me2]

If it were me I would not ever consider myself stuck on a high dose of prednisone- although I have BEEN on high dose of prednisone for long periods of time. An alternative must be agressively pursued. Either in one of the lesser immunosuppresants or with the Rituxan. I think if it were me in the same circumstance I would be insisting on repeating doses of Rituxan. This is a better risk than staying on high dose of prednisone. It is not a matter of IF prednisone will cause you SEVERE problems- but when. The clock is ticking.

I don't know where you are located Brian but it doesn't sound like the US . In the early days of Rituxan use 4 infusions weekly were considered ONE treatment. Now, one infusion two weeks apart (for a total of two infusions) is considered ONE treatment. In addition there is now a protocol for maintaining control of WG with a single infusion every six months- this is what I am currently doing. As long as I have active WG symptoms and have to manage them with high doses of prednisone I will be doing Rituxan to attempt to control the disease. There are no WG symptoms that are considered mild. WG can change very, very quickly from mild to wild and at that point is much harder to control.

It is unaacceptable to go months and years on a high dose of prednisone and not be trying something else to get symptoms under control and hence lower the prednisone.
It sounds like you tried Rituxan three years ago one time and it didn't work. I think I would be pushing to try it again if it were me.
From what little you have told us it doesn't sound like your doctors are the best in the field. Wherever you are I would be looking for the best doctors. Here in the US we are lucky to have consultants available through the Vasculitis Foundation. Where are you located Brian? If you are in the US your doctors can consult with some top vasculitis doctors for free and should be.

[brianli]

me2- I am in Pittsburgh, PA. Lupus Center Rheumy here seems to be in touch with Cleveland Clinic but I did lose my one doc and had to resume with her replacement.....A specilist near Pittsburgh would be great since Cleveland is 2.5 hours away and does not accept my insurance.......went to Cleve Clinic once but was cumbersome-. I have asked for the Rituxan again

[me2]

Hi Brian,
It sounds to me like your care is getting lost in the shuffle a bit. If my doctor was seeming to be in touch with Cleveland Clinic (which is top notch) I would want to know the specifics of who they are talking to, when they talked , and what is the specific advice of the Cleveland doctor. Then work out a plan to implement it at home. I can't afford to go to Cleveland either but if my doctor works with them thats pretty darn close.
How long ago did you get your first treatment with Rituxan and how long ago did you ask for Rituxan and what was your doctors response?