Update on pberggren

[Shannon]

Hi Phil,

I'm sorry to hear about flare and all of the medicine you have to take. It can be so scary when the WG rears its ugly head and reminds us it's always there lurking in the background. I hope the medicine helps and you start feeling well again soon.

I read you something you just wrote and wanted to ask you about it. You said something about sticky mucus. I have had WG since 2005 and it has been well-controlled all this time, but I have had severe congestion for the past several months and sometimes it feels so sticky that I cannot cough it up. I have been telling my pulmonologist that I think this has something to do with my WG but he isn't completely certain. It is to the point where I don't do much activity because I have trouble breathing with all of the congestion. It's not an infection because it's been ongoing since last May. Do you think it could be a new component of WG that I just haven't experienced yet? I was thinking about making another appointment with my pulmonologist but I have to tell you, it's reaching a point where I feel embarrassed to be calling again. My nose has also been so stuffy again that I find myself holding it open while I work and I'm on 5 mg. of Prednisone daily, 20mg of MTX weekly and a massive dose of steroid nasal spray every day. I'm bummed and a little worried about what the next step could be if I'm having a flare despite the medicine I'm on. I'd love to hear your thoughts on this, although I suspect I already know the answer.

Thanks,
Shannon

[pberggren1]

Shannon, I suspect the steroid nasal spray may be the culprit here. Long term use of that stuff can cause a rebound effect where you will actually experience worsening symptoms.

But bottom line: Do you have a Wegs specialist? That is absolutely paramount for ALL Weggies.

Only a Wegs specialist can make the right calls here. Is your ANCA up or is that a reliable marker for you? What about your other numbers?

[pberggren1]

I get my first infusion of rtx tomorrow at 11am. And the total cost of all 4 doses is $18,544.87. Luckily I only had to pay $2.00.

[annekat]

Shannon, I have the same problem with the sticky mucus that is hard to cough up, causing difficult breathing at times, though I don't use the steroid nasal spray. I'd trust Phil on that, though. It seems like my problem is worse in the winter months when I'm breathing dry or damp cold air. We have had "freezing fog" here lately.... can't be good! I always put a pan of water on my wood stove and plug in humidifiers are good, too. I also don't think I drink enough water, and one can take generic Mucinex to thin mucus. My take on the problem is that the mucus forms in my sinuses or in response to sinus drainage, and is definitely Wegs related. But your situation could be totally different, and Phil is right, try to hook up with a Wegs specialist, especially since your pulmonologist seems uncertain about the cause of your symptoms. I should think he'd WANT to at least consult with one himself, if you can't easily access one in person.

Another thing that causes a rebound effect is dextromethorphan, which is in many cough syrups and suppressants. I take it once in awhile if I'm going somewhere where I don't want to cough, but if I take it very often at all, I get into trouble with too much coughing. So I try to avoid it in most cases.

[Shannon]

I have a pulmonologist who knows a lot about Wegs but I don't think he is considered a Wegs specialist. He was actually talking about transferring my care to a Rheumatologist on my last visit and I was wondering why. Maybe my symptoms are becoming too widespread for just his one area of expertise. I have been on the generic for Flonase (2 sprays each side, everyday) for a year now. I read the pamphlet and it said it can also cause upper respiratory problems. Maybe I just need to stop taking medicine for a while and see what happens. Regarding my blood work, I haven't had my ANCA checked for a while, but all other looks normal...but it also looked normal when I was coughing up blood and my nose had collapsed on my face. I wonder why that is with WG? I read that over and over on this site, which I think is what makes it so hard for doctors to diagnose.

[Shannon]

I get my first infusion of rtx tomorrow at 11am. And the total cost of all 4 doses is $18,544.87. Luckily I only had to pay $2.00.

What is RTX?

[annekat]

My doc is also a pulmonologist, who has treated some Wegs cases but is by no means a specialist. I would like to see a rheumatologist but in my area, it isn't easy to find one who has Wegs experience. I think it is good of your doc to want to transfer you, and you could still see him for lung issues. I imagine he will find someone he feels is qualified to treat Wegs. For myself, I have a name of a rheumy in Seattle who treats one of our forum members and consults with top specialists as well. It would be a bit of a drive, and my vision isn't that great right now, but I suppose it is only a matter of time before I'll take the leap and pursue that.

[Dirty Don]

What is RTX?

rituxin or rituximab...a very expensive, depending on insurance, drug. Has been used very successfully with WG. For me, it's the next step if the mtx doesn't hold up or do its job.

[Shannon]

Thank you all. It has been great talking with you about this rather than just sitting here trying to figure it out myself. I do take Mucinex everyday, which helps a lot with the congestion. I too believe that the root cause is just constant drainage. I have figured out that the more room temperature water that I drink the looser it is. I live about three hours from the Cleveland clinic and my husband was just asking why I have not just found a WG specialist there because they are on the cutting edge of WG research. Can anyone confirm that a Rheumy from Cleveland Clinic may be better than one from U of M? I don't mind making the drive but if most rheumy's are well-versed in WG then maybe it isn't necessary. I do think it would be nice to be able to ask a WG specialist about the different treatment options since I have never tried anything other than the MTX/Pred/Bactrim combination. I love my pulmonologist so much. He's been with me since he was a fellow at U of M and I was one of his first patients so we have learned about WG together. I have a fear of losing that close personal relationship we've developed, but he also said at my last appt that he only has a CT and stethoscope at his disposal where a rheumy has so many more tools and knowledge. I think he's worried at this point that he's doing me a dis-service by not referring me out. And, I could still see him for the lung issues I guess. 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...

[annekat]

What I've gotten on here is that most rheumys AREN'T well versed in Wegs, because it is so rare, and most of their patients are there for more common diseases like rheumatoid arthritis. But that doesn't mean that you couldn't find one a little closer to home, say at the U of M, and he or she could consult with someone at CC from time to time. Or you could go to CC once in awhile but mainly go to your local doc. In my case, there is a rheumatology clinic at U of WA, and some of the docs there are experienced in treating WG and other vasculitis, though some on the forum would not consider them specialists. In the case of the doc I heard about through a forum member near me, I read on here that he does consult with Dr. Langford at CC.

In my case, I was started on CTX because of my lung issues, and when those cleared up, I was switched to MTX. As for RTX, my treatment started right around the time it became approved to where insurance companies would cover it..... but I had bad insurance and am now on Medicare, which is also not great, and have no supplemental plan, so with the copay, it would be too expensive for me. Unless I could make some special arrangements, which I've heard are possible.