Hello and very nervous

[Sangye]

Just saw Jan's reply. I agree with her that your rheumy should call Dr Lebovics. I agree with everything else with a "but" for the ctx. True, it won't affect SS, but you have major lung problems and it is likely to need a big gun to stop that.

As far as spontaneous remission, it doesn't really happen with Wegs. Symptoms often ebb and flow, though and that can give the appearance of spontaneous remission. Lung involvement tends to progress slowly, but without treatment Wegs is 100% fatal. The pulmy who diagnosed me made a point of repeating that last phrase many times a day to get me to take it seriously.

[elephant]

Kathy, I agree with Sangye and Jan. I was thinking the same thing...Need to call Jan's surgeon. It is time to get a Wegeners specialist.
Dr Carol Langford is a WG specialist at the Cleveland Clinic in Ohio. I see her and she is fabulous!
I think you already know this too, need to get aggressive and don't worry about what people think. This is your life and need to fight.
I love pleasing people too, but I realized I have to fight for my life and get great health care.
I want you to have the best care possible.

[JanW]

I had forgotten about your lung problems - yes you would need a big gun to take care of that.

The biggest issue remains what can be done about your windpipe. That the urgent/emergent situation at this point. You don't want to end up with a trach if you can avoid it. It can be hard to get off of them.

[cathy2330]

Hi again all you lovely people, thank you so much for the quick responses! Sanyge what is the CSR blood test, I have a creatinine of 72??? is that what you mean. Again that is within normal range, my ESR was 6 which I have no idea what that means but was told anyting under 21 is good and I am assuming lower is better?? The only thing that seemed a little high as to what I was told was normal was my RCB (red blood count??) which was 4.99 and apprt. 3.5 - 5.00 is normal so on the high end of normal??? I am going to take all your suggestions and have the nasal surgery tomorrow (one more general anesthtic) recoup from that and then see this ENT on thurs. and he will have the biopsy results then. I am also going to ask him his opinion on treatment as he seems to know a bit more about Wegs (if it is that) than my rheumatologist. I will also maybe see if I can call one of your docs next week. Unfortuneatly here it does not look like we have any real "specialists" in this area which makes it rather difficult. I am hoping to find someone maybe this ent that will help me with the subglottic stenosis (something more permanent) and also the bronchi's.

You would be proud though as I did get a little angry on the phone with the rheumy, but then I got upset and started crying (oh the emotions) and then I couldn't really talk. I think I am getting close to me limit (which for me is a good thing because I then get angry) and will be more persistant. I know that you need to be and really my husband is extremely laid back and not outspoken so he doesnt really help but I do have a girlfriend that I am going to bring with me next time to the rheumy, and boy oh boy watch out if you upset one of her friends. She has no problem speaking up for you and that is what I need. Thanks everybody for all the support and help, like I said I think I am more confident in your suggestions at this time. I do think in my heart that I really do need some medication of some sort to help this not to keep happening , the inflammation, but I just don't know what it is????

So thats all for now everyone thank you again so much for your thoughtful info, I am heading out for dinner tonight, no eating or drinking after midnight, its my daughters 22nd birthday tomorrow!! Thats my baby too!!! Hope everyone has a terrific evening.

Cathy

[Sangye]

Cathy, the CRP (C-Reactive Protein) test measures inflammation like the ESR/Sed Rate. The CRP is better at detecting acute inflammation and also drops quicker than the ESR when the inflammation is decreasing. Docs have to measure both to keep an eye on Wegs.

Though I've never been shy to express my opinion, before Wegs (and lots of therapy!) I was very confrontational about it. I only knew how to defend myself and get angry. I've learned how to be direct and clear without being angry. Takes care of most things and I have good communication with my docs.