View Full Version : Back from MAYO

03-27-2010, 01:02 AM
I am back from Mayo Clinic. Yesterday, I had breathing test, urinalysis, blood work, ENT visit, and then my pulmonologist. Everything is good except sinuses, breathing test even improved. They think I have active wegeners in the sinuses still and they are thinking I am feeling great because of the steroids I was put on in the hospital last week.
So, my pulmonologist wants to put me on Rituximab. She said I would do one infusion a week for 4 weeks and then that would be all I should have to do. She said since I haven't been able to come down from 20 mg of prednisone, that the methotrexate and pred are not doing the job. She is writing a letter to insurance - she said it takes about a month for them to approve it. So she said stay on the methotrexate and pred until then.

Any thoughts, opinions, questions, concerns from anyone???

I am worried because I feel great now, and the only major thing is the sinuses. I didn't realize they put you on that med for sinuses. I thought maybe if the lungs were really bad or kidneys but as of right now it looks as if it is just my sinues.

Even my blood work has been good, never had a positive anca or anything. The only thing that diagnosed my Wegener's was the looks of the biopsy from my nose - was so inflamed.

03-27-2010, 01:34 AM
I know that rtx is far less toxic to the body than ctx. Did they do another biopsy of your sinuses on this last visit to Mayo?

It sure doesn't seem fair to wait 4 weeks just for the insurance company to approve the rtx when your health is on the line.

Could you give more details about how your sinuses are doing? How are you feeling overall? Any joint pain or fatigue?

03-27-2010, 01:55 AM
Brooke-- I had a feeling it was Wegs. High-dose pred will improve active Wegs symptoms very quickly but won't improve infection. Please have confidence in your Mayo doc. When my Wegs doc put me back on ctx last summer, I was in bad shape but he said he was more worried about where I'd be in 6 weeks if we didn't start when we did. Wegs docs look for trends and progression, not just how you are today.

However, it should definitely NOT take a month to get rtx approved. The doc needs to ask for an "Expedited" authorization. That usually takes 2 business days to go through. Don't assume your doctor's office already knows about it. The vasculitis centers haven't had to do a lot of special authorizations because ctx, pred, mtx, etc... are all covered without argument. Even JHU didn't know a few things about getting rtx approved quickly.

The only other Wegs drug that usually requires authorization due to expense is Cellcept.

I suggest you call them today and get the ball rolling. Rtx takes 6 weeks to start working. If you wait a month for auth, then you're talking 10 weeks for it to just start working. That's a long time with active Wegs.

03-27-2010, 02:26 AM
Thanks for the responses.

I am feeling great overall, no symptoms at all right now. Even with my sinuses looking bad, they have never given me a problem before. Never have had face pain, headaches, no joint pain - nothing. Just crusting that comes out when I do my sinus rinse.

They did not do a biopsy of my sinuses recently. I had one last year, if I had one now, I don't know what that would show since I have been on steroids and methotrexate.

My doctor said she doesn't think I need rtx immediately but thinks I will need it within the next couple of months.

03-27-2010, 02:30 AM
Hey, Brooke...glad that you have had everything checked out. If it's any reassurance, rtx is one of the drugs that my rheumy will consider for me if I can't tolerate mtx, and I only have saddle nose and SS (turns out my sinus involvement is fairly minimal and my bridge collaspe was due to tissue death on the outside...I don't have a hole in my septum). My rheumy has a patient with a positive biopsy that never had a positive c-ANCA, P3 or even SED red, so it's possible. Whereas mine are sky high and I've only had negativ biopsy findings. Rtx is effective, well tolerated, and so much less toxic than ctx....you should be fine. I don't kinow anything about the insurance aspect, but I'm sure you can get it more quickly than one month. How did they say your SS is progressing--that's certainly something to keep a close eye on...and has there been any movement on the cartilage of your nose (I know you already had it repaired.

03-27-2010, 02:45 AM
Hi Jan~

Thanks for the positive outlook!! My pulmonologist says my SS looks good, I believe he said only 10 % narrowing. My nose is also fine right now since my surgery last year :)
How long have you been on mtx?

03-27-2010, 02:54 AM
I'm very glad your nose is holding up well. My surgeon says that this is always a concern with active WG (which is why he will, with rare exceptions, only do it if someone can get to remission for six months). Your pulmo does your brochoscope? Do they put you to sleep and go all the way down into the lungs (only reason I ask is that my pulmo didn't even have that kind of equipment to go through your nose in his office). I also hope they aren't relying on the interpretation of a CT scan -- mine was pretty inaccurate in regards to the extent of my SS, and the report actually noted that it was difficult to read. Actual visual inspection was always best. Now, after my surgery my ENT will visually inspect every two months. The thing is, SS is difficult for the patient who has never had it corrected to quantify because we tend to immediatly compensate for the difficulty in breathing by tailoring our activities.

I was on mtx for two week about a month ago -- never even made it to the full tolerance does before it spiked my liver enzymes. This time I am going for it at a lower initial tolerance does with strict avoidance of alcohol and all NSAIDs. I've only taken the first tolerance dose last week -- it will take me four weeks to get to a therapeutic dose, with no guarantees that it will work for my disease. If I can't tolerate it, or it doesn't work, next steps would be Cellcept or Imuran, or rtx.

03-27-2010, 03:41 AM
Jan, I hope the mtx works for you! I have tolerated it really well, it's just not working all the way for me.
Yes, my pulmonologist in my home town did my last bronchoscopy. He did it for me while I was in the hospital last week. He goes through the nose and they give me a medicine to relax A LOT but they don't put me under all the way. He said I talked the whole way through the procedure, I sure don't remember though!

03-27-2010, 09:09 AM
Brooke, once they establish the Wegs diagnosis they shouldn't have to do more biopsies. They would only do another if you developed a lesion that didn't look like Wegs.

03-27-2010, 01:06 PM
I just returned from the rheum today. We drive 5 1/2 hours one way, but I feel that I am getting excellent care. If you recall, the insurance company denied my request for Rituxan. Genentech gave it to me at no cost, because I fit their guidelines for need. I received a letter from the insurance company, however, stating that they would not pay for the cost of the 2 infusions I had in January. Total charges almost $20,000. I was mortified and spent a couple of sleepless nights and we were preparing our complaint to the state insurance commissioner. Got there today at the office and we were presented with a bill for $340...basically my yearly deductible. For some reason, the ins. company paid the cost of the infusion.

Of course, I started to cry. I hate that part of the prednisone!

The dr. did say that with Rituxan and the other disease modifiers - methotrexate for instance, it can take several weeks to months in order to feel better. There is no waking up one morning and declaring one's self to be cured. In my case, it has been 8 weeks since my last of 2 infusions/ 2 weeks apart. No side effects, just a subtle improvement. He also declared that he has seen patients take until after the 2nd round of infusions to feel a lot of improvement.

If I feel the need, we will move my 2nd round of infusions up earlier than the scheduled 6 months. Labs drawn today - can't wait to see the results.

03-27-2010, 01:29 PM
I'm so glad the rtx got paid for! It sounds like you're on the right track. You're lucky not to have side effects from the rtx-- I feel like I got run over.

I did my second round of rtx at 5 months instead of 6. I've heard of them doing them as early as 4 months, but that's not typical. Fingers crossed for good labs. :)

03-27-2010, 01:31 PM
Thanks! Oh, I felt like I'd been hit by a truck and drug through a knot hole for 4 weeks. But I guess I'd expected that. I couldn't even lift my arms up to hold a book for reading for a week.

03-27-2010, 01:33 PM
Lola that is great news that your insurance paid for it and should! Hoping for a quick recovery for you real soon. :)

03-27-2010, 01:35 PM
Yeah, that's exactly how I am! I can't even talk on my cellphone because I can't hold it up long enough. I had a 5-minute phone conversation today and my arm felt totally dead afterwards.

03-28-2010, 12:43 PM
Yeah, that's exactly how I am! I can't even talk on my cellphone because I can't hold it up long enough. I had a 5-minute phone conversation today and my arm felt totally dead afterwards.

ooohh... I can relate...I've been in bed all day I was hoping I would be completely back to normal after 3 days of pulse IV steriods (can you imagine what an active fantasy life I must live in, even though I intellectualy know that lala land is not a real place). I have to chew small bites or my jaw gets tired, I hate to talk on the phone.

03-28-2010, 01:04 PM
Lightwarrior... you really do spend too much time in fantasy land! I hope you get stronger. Remember, major pred makes you feel like you can do more than you really can.

03-28-2010, 01:42 PM
Lightwarrior... you really do spend too much time in fantasy land! I hope you get stronger. Remember, major pred makes you feel like you can do more than you really can.

that's why I'm freaked, after 3 days of 1000mg IV I should feel like I can do anything, at least breathe better. Instead, I'm feeling weak as a cat my back still hurts. May I have pleas have some cheese with my whine??

03-28-2010, 11:46 PM
I was the same way, even after pulse steroids. My body was too depleted to feel stronger due to the pred. I only noticed the effect on my mind and emotions.

The fact that pulse steroids have you feeling weaker means you are seriously wiped out by the Wegs, which is seriously active. I can't emphasize this enough. Your back is weak as a result of overall depletion-- those muscles shut down just like any other part of the body. Even your jaw muscles are fatiguing easily.

I kept working until I was diagnosed and put in the ICU with profound anemia and severe pulmonary hemorrhage. Like you I was so depleted by the time I started pred that not only did it weaken me further, but it set me up for many complications-- some immediate, some delayed. Those months depleted my adrenals to the degree where I have still not been able to recover and function-- 4 yrs later.

I don't know if you can hear this, Lightwarrior. I'm not sure anyone could have gotten through to me back then. But seeing you go through this is like reliving a nightmare for me. I've spent a lot of time wishing I could get a "do-over" of that period. I'm trying to keep you from going off the same cliff and regretting it later.

03-29-2010, 05:12 AM
Lightwarrior, I have to agree with Sangye. I had to cut my work to 1/2 time last August because I was so very ill. Even that didn't help. I just got sicker.

I know there's no easy answer for you right now with the insurance problem. I just know that you would do so much better if you could somehow alter your work schedule, or take some time off.

03-29-2010, 08:37 AM
Sangye and Lola~

Are you feeling so sick due to the Rituximab or the steroids? Is everyones dose the same of iv steroids before getting the rituximab?

03-29-2010, 11:16 AM
It's impossible for me to tell, Brooke. I'm extremely sensitized to pred. Each 1mg acts like 10mg in me, so the hit of 100mg solumedrol (equiv 150mg oral pred) at each infusion is like pulse steroids to me. (Pulse steroids= 1,000mg solumedrol= 1,250mg oral pred= the highest dose of pred they can give)

As far as I know 100mg solumedrol is the standard dose when getting rtx infusions.

The infusion nurses did tell me most of the other patients (Weggies and non-Weggies) getting rtx are wiped out like me. I see my Wegs doc this Wednesday and plan to ask him about this.

03-29-2010, 12:53 PM
Do you feel wiped out the whole month? Like flu symptoms? Are you able to function or do anything? Should I plan on being able to work and take care of my 3 year old? How long before you start to feeling better?

03-29-2010, 01:09 PM
I don't have flu symptoms, but extreme weakness and fatigue. (Other symptoms, too, but I can live with them easier.)

I don't think you should put too much stock in my experience, Brooke. You may have a much easier time since you're not in bad shape to begin with. Like all things Weggie, it's best to play it by ear.

03-29-2010, 10:33 PM
Thanks Sangye!