Those with Sinus involment

[DEE]

i did the same with a photo that was took on my daughter 30th birthday but she was cross said it didnt matter
i make wash with bicarbonate soda -sait and sugar have been doing since orignal nose surgery but try to limit to morning and night DEEx

[Cindy M]

Hi, I can relate the sinus problems. The crusting is awful. I do a sinus rinse twice a day and some days I still get quite a blockage and it is extremely painful. I have been having alot of sinus pain, teeth pain etc. I have also been getting more nose bleeds so I know that WG is not under control at all. I have an appointment with my rheumy tomorrow so I am hoping for some changes to my meds. I am still on 60 mg of preds a day and 150 mg of Cyclo a day which is causing me to have quite the upset stomach.

[elephant]

Hi Cindy, how long have you been on 60mg of prednisone. Hope all goes well with your Rhuemy and the medicines get changed or increased. I agree with you Cindy on that your WG is active. Keep us updated. good luck!

[Sangye]

Cindy, are you taking an acid-blocker for the pred? If it's the ctx that's upsetting your stomach, you can usually split it into 2 or 3 doses. As long as I took it in 3 doses my stomach was fine. Check with your doc, of course.

My docs told me as long as I got the full amount of ctx in, they didn't care how I split it up. Taking it all in the morning makes it easier to flush it out of your bladder all day and keeps you from being up at night to go to the bathroom. I chose frequent nighttime bathroom trips over intense stomach pain.

[renidrag]

I agree with Sangye, it doesn't matter what dosage or when as long as it all gets there. That's what I was told.
Dale

[Coco]

How exactly did they fix your stenosis?

[Cindy M]

I have been up and down for the last year. The lowest I got down to was 40 mg but that didn't last long. I went to see my Rhuemy today, not much of an improvement if any on my blood work. What she has decided because the high dose of preds is not working, the cyclo that I have been on for a year now is not working, the rituxan IV that I did in Aug/09 (2 sessions) did not work that she would like to get me onto Cellcept. She also wants me to lower the preds because it is causing more harm than good. It has helped with the eye flare up but not the sinus. I am lowering my preds by 5mg per week, and monitoring myself for any changes. I went to the pharmacy today but my insurance does not cover me for cellcept so she is going to put a request in and see what happens. Until then I will stay on cyclo for now.

[elephant]

I am glad the Rheumy is reducing your prednisone. I am on Cellcept 2000mg a day, they might increase it to 2500mg. IT's a wait and see. I am tapering my prednisone 1 mg every 6 weeks. I am also on cyclosporine ( this medicine lower the immune system and i take it for my kidney transplant). I am wondering if there has been any research on using three medcines at a lower dose to keep Wegeners in remission.
Cindy, I hope you can get the Cellcept, I have no problems with it so far. I have been on it for a year now. Cindy mabey you need more infusions of the RTX for it to work, I bet Sangye would have more to say on that subject. Thanks for the update.

[Sangye]

Well, yes I do! Cindy, you said you had 2 sessions of rtx. I assume you mean 2 infusions, 2 weeks apart? That is the milder protocol. The other protocol is once a week for 4 weeks. I can't imagine calling it a rtx failure if they only did the milder protocol.

I was on Cellcept-- great drug, but it doesn't induce remission or get Wegs under control. It's not strong enough. They have to use a big engine--ctx or rtx-- first and then put you on Cellcept to maintain it. That's what my Wegs doc at JHU said. Have you called or emailed the VF to ask about getting a VF consultant doc to work with your doc? Sounds like she's floundering.

[JanW]

I'm with Sangye on this one -- to some extent I can understand a doc trying out different things to see if they will work if there isn't a sense of urgency (like my case) but Sangye is right, Cellcept isn't what you go with when rtx doesn't work. To give an example, in my case I am on mtx, 15 mg to start, and no pred. I have two classic WG symptoms, SS and saddle nose, neither of which track disease activity (meaning that they don't necessarily get worse if your disease gets worse), but I do have all of the blood markers for the disease. That having been said, I went from some pretty severe nasal crusting to none at all over the course of about the first six weeks after diagnosis, despite no therapeutic treatment, so, to my doctor's mind, the tempo of my disease is such that he doesn't have to pull out the "big gun" of pred (he considers it a big gun, I know that not all do but he says that it is increasingly being seen that way in the rheumy, though not general doctor, community). He told me last week that if my liver couldn't tolerate mtx he would go to Imuran (he thinks that Cellcept is getting all of the hype right now because some research suggests less cancer risk -- however, the drug is not as old as Imuran, so who knows) and then to rtx (and he was looking at the milder protocol). Luckily I'm okay on the mtx for now, but, like Sangye says, he definitely considers Imuran and Cellcept in the same range as mtx...not a first line for someone having major medical issues and severe flaring.