Update on pberggren

[Dirty Don]

Don, how long have you been on MTX? My pulmonologist said that Cytoxan would be the next step for me, I wonder why not RTX if it works so well...

I've been on mtx just over a year and a quarter...seems to have worked well enough...not many if any side effects. As to your pulmy and cytoxan, I don't know why he/she would recommend ctx over rtx, maybe Sangye or drz can answer that...but...although you have a close relationship with your doc who seems to be trying, you do need people who are experienced with WG rather than those willing to learn...there's a cost to that. Quick story: the hospital system that saved my life after my initial flare was willing to work on/with me for the WG...but, since Mayo did the analysis, I went there. ALLLLLL the difference in the world: Mayo has an organized, experienced, aggressive, and research oriented approach. Wham Bam, I was on the Mayo/WG train, haven't got off yet, don't really want to, and they haven't missed at any step in my treatment. The advantage of using a research oriented facility is obvious in the specialty abilities and resources. I'd go to CC, if for nothing else, to see what they have...you may be impressed and helped!!!

[Pete]

Hi Shannon, I was in a situation similar to yours last year. I was diagnosed and being treated for WG by a pulmonologist at Ohio State. They were treating maybe 30 wegs patients at any given time. They kept me on cytoxan for almost 18 months. I self referred to Dr Alexandra Villa Forte (rheumatogist) at CC. The practice there sees around 700 wegs patients. The question I would put to your pulmy is the number of wegs patients they are treating. If it's a relative few, you might want to go to CC. I'm very pleased with Dr Villa Forte and would highly recommend her.

[drz]

What is RTX?

Our shorthand for Rituxan or rituximab.

[drz]

I've been on mtx just over a year and a quarter...seems to have worked well enough...not many if any side effects. As to your pulmy and cytoxan, I don't know why he/she would recommend ctx over rtx, maybe Sangye or drz can answer that!!!

In my case they initially tried RTX but it takes longer to work so they switched to CTX as it works quicker which is very important if your survival is in doubt. They did IV CTX first on me but then switched to oral cause it is easier to regulate and the doctors also said oral tended to be more effective. It was really hard on me (real low WBC and frequent infections) and eventually they had to give up on CTX for me but by then I had recovered enough to switch to generic Imuran which worked well for me. RTX is my back up plan for a real serious flare. CTX is also a lot cheaper and some insurance plans might require a trial of CTX first or good reason why not before they would cover RTX which is very very expensive.

[pberggren1]

Got the rtx today. In and out of the hospital in about 7 hours. The rtx only took about 4 hours to infuse. Went faster than I thought it would.

Doc wants to do rtx now every 6 months as a maintenance dose. He will try and get the drug plan to approve it for that use.

Doc also wants me to avoid all public places for the next 4 weeks. So that means no more pool for a while.

All this solumedrol and rtx has made me really dry and tired.

[annekat]

I hope the aggressive plan of action ends up being worth it! I'm sorry you aren't feeling great and hope that improves soon.

[pberggren1]

Thanks Anne. How are you keeping these days?

[annekat]

Thanks Anne. How are you keeping these days?

Oh, doing OK, just a lot of that dry coughing stuff and a little trouble breathing when junk is stuck in there. Pretty fatigued after any kind of work. Need a few days to recover from anything major. I'm getting labs next week so will see if anything has changed..... generally been on a slow but steady improvement course but not ready to lower any meds except maybe taper pred a tiny bit if labs are OK. That's what I'm going to tell the doc, anyway.

I might add, been sinus rinsing more than usual, because sometimes I know there's still stuff in there, so I repeat. The other morning I did it 5 times and got two HUGE chunks, one out of each side of my nose. I mean HUGE. Biggest I've ever seen, like giving birth, as someone on here said. Usually something that big ends up in the back of my throat instead. I'm telling you all this because I think you might kind of like that sort of thing. I didn't take pictures of them, though. (The rest of you, sorry for the gross-out!)

[Shannon]

Hi Shannon, I was in a situation similar to yours last year. I was diagnosed and being treated for WG by a pulmonologist at Ohio State. They were treating maybe 30 wegs patients at any given time. They kept me on cytoxan for almost 18 months. I self referred to Dr Alexandra Villa Forte (rheumatogist) at CC. The practice there sees around 700 wegs patients. The question I would put to your pulmy is the number of wegs patients they are treating. If it's a relative few, you might want to go to CC. I'm very pleased with Dr Villa Forte and would highly recommend her.

Thank you for the name at CC. I'm going to call about making an appt. I think you're correct that my pulmonologist's clinic doesn't see the kind of WG volume that CC does. After reading about Dr. Koenig I sure wish I could see him. Good advice! It's easy to keep doing what feels comfortable.

[annekat]

Michelle, I'm glad you like my post about the chunks. I was a little worried that I was rude to Phil by implying he liked chunks. It's just that I'd heard him mention them a few times. It was my Weggie mind going out of control a bit.

So, Phil, no offense intended. But they really were impressive! And my nose has been a lot clearer since they left.