This past weekend, I was coughing more and felt more wheezy/out of breath. I go to mayo in a couple of weeks and I also put a call in to my pulmonologist today.
I am wondering if there is a different drug they might try if the methotrexate isn't working.
Is there something similar to metho or would I have to go on the powerful drug?
Since I know that you have SS, Brooke, you are going to want to have them check your windpipe again (maybe they do this anyway?). All the symptoms you note are also true of SS and severity of disease doesn't correlate with it -- that is your stenosis can worsen quickly while you disease is fairly quiet. Do you have a local ENT on the case?
Thanks Jan~ I know they will check my windpipe when I am at mayo because I am getting a bronchoscopy, plus I will be seeing ENT there. I do have an ENT that I see here but he is not managing my case. I could probably get in to see him but I think I will wait until I go to mayo if I can.
The doctor at mayo also believes I have asthma. I have done numerous breathing tests and they still believe I have asthma along with wegeners. Maybe I do then?
Are you taking bets?
Whats that Jack? Are you going to bet that I will have to be on something different? Oh man, I hope not.
I'm with Jack -- are you take bets?
On what basis does he believe that you have asthma? And is this adult onset. Simply not that common...but a very common misdiagnosis in us Weggies. Look, all they have to do is look at the flow volume loop on your breathing test --- it's not even anything they have to figure out on their own. The machine tells them where the obstruction in breathing is coming from.
Could you have a bunch of other stuff going on with your lungs -- sure? But in you SS is still going to be the likliest cause of breathlessness, I think.
Jan~
I have had that test done, but I am not sure the results of that or even how to read it?
Does prednisone help with SS? I am currently on 20 mg. I have been on methotrexate since November, as I said in a previous post, my lungs looked good via CT Scan in January but my sinuses are still funky.
If you go on the internet and look up flow volume loop and wegener's in google, you will actually be able to see some graphical examples. The loop flattens when an SS patient breathes in -- that shows that there is extra-thoracic (outside of the lungs, in other words) involvement. The point is that your docs should be reading this though -- not that you should have to -- and that they should be making sure that loop corresponds with obstruction or tightening in the lungs and not higher up in the airway.
Medically, who knows what drugs work with SS? SS is very rare -- most WGs will never encounter this problem. Occuring as it does in less than 20 percent of WGs, all the studies are tiny. Some seem to indicate improvement if treated with ctx and steroids -- but I don't even know if that's the latest thinking (looks like the study was done before RAVE established the efficacy of rtx). The windpipe action does runs independent of the course of your WG -- we know that. WG SS patients are more likely to get saddle nose involvement but less likely to have renal involvement, if you want to take the good with the bad. There are a few power point presenations on the internet that are quite good on this subject.
What does work, if it gets bad enough, is surgery. When they go in, they will swab the area with chemo drugs, which, as my doc says, may work or may not. It's just the state of the art at this point. I had no medical option at the point that mine was discovered and I was certainly made aware that in the future it would be handled surgically as well.
Wow, thanks Jan. I had no idea that wgs with ss are more likely to get saddle nose - which I had! I think I would rather have that than the kidney involvement.
I will talk to my doctor at mayo and ask her about my results of the breathing test. She obviously knows I have SS so I will see what she says now about asthma.
She did mention that we can fix SS with surgery but she didn't want me to have that at this point with the active wgs going on. I think once I get some inflammation down, it is a possibility if needed.
Brooke, you have many options when it comes to medicines for the Wegeners. What kind of sinus problems are you having now?
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