What To Do If You Can't See A Specialist Right Away

[JanW]

Since I've come here I've been thinking a lot about how we nag people to get to a WG specialist, and how we also know that there aren't hundreds of them in the world. There could be people here posting, or lurking, who think that there's no way to travel across the country for a specialist -- they may not have the money, the insurance, support, whatever. I thought it would be helpful for the newly diagnosed, or the people whose own docs are on the fence about whether or not they actuallly have Wegs, to get some tips from us about what they can do in the meantime (not that we will stop nagging!) because there is still a big space between intake at JHU, Mayo or wherever and seeing the PCP that is in your plan who doesn't even know what kind of bloodwork to run, or what symptom to look for. I think people can get help, or at least not do harm to themselves, until they can get to a center. Full disclosure: being in the USA, I'm using US terms, and assuming a US healthcare model here. I can't speak to how it works in other countries.

I'll start:
1. if anyone other than a rheumotologist is trying to treat/diagnose you for WG, get to a rheumotologist. And preferably a rheumotologist associated with a large teaching hospital, if that's available to you in your area, not the solo practioner who mainly treats RA. At least this person may have seen WG before, and be willing to consult with Vasculitis Foundation experts on your condition, than the guy who is also trying to run his office and has a four month waiting list. Be willing to travel a little for this. This person should ideally be guiding your care and prescribing the meds, not an ENT, PCP, or pulmo.

2. Don't delay in getting the blood work done. Even though negative C-ANCA and P3 don't rule out the disease, having positive in either of those numbers means a much greater liklihood that you have this disease.

3. All that wheezes isn't asthma. Boy, I wish I had taken this one to heart! I know that many of us on here have been diagnosed with asthma, and all I can say is that anyone who is suspected of having WG should also have an ENT do a partial bronchoscope so that they can check your throat for stenosis, a rare but classic symptom of WG. This is very easy for an ENT to see with their naked eyes, and a skilled clinician can get all the way down and tell you how much of the airway is open (even someone who can't go all the way down your throat can order imaging that will show the stenosis). If you are experiencing breathlessness, and are suspected of having WG, have this test done.

Any others?

[Jack]

4. An infection that does not respond to antibiotics is probably not an infection, but a Wegener's symptom. Especially if it is sinus or lung related and comes together with other symptoms.

[JanW]

I just thought of another one -- if they suspect WG, have them test your BUN Creatinine (kidney measures) and urine. Kidney involvement can be silent -- you may not know until you are pretty sick.

[Sangye]

6. Any rheumy in the US can work with a VF Wegs consultant doc on an ongoing basis to guide your care. (I believe VF docs will work with docs in other countries, too, but I'm not 100% sure.) If you can't travel to a major Vasculitis Center, there's no reason to go without this necessary help. If your local doc is too arrogant and/or unwilling to work with a VF specialist, that's a big red flag that they don't know Wegs, and you are placing yourself in danger by remaining in their care.

7. Get the ball rolling on getting to a Wegs specialist or getting a VF consultant involved, even if your case is currently mild or you're satisfied with your local doc. Three reasons: 1) It takes time to get set up with a Wegs doc, 2) Wegs can change on a dime. It can quickly become too complicated for a local doc. (My own case went from "severe but straightforward" to "you're in unchartered territory" in a single day.) 3) Docs change under pressure. My original rheumy seemed fine until I had one complication after another. He began blaming me, wouldn't answer phone calls or even admit me to the hospital, etc....

[Sangye]

8. Trust your sense that something is off. I can tell the Wegs is flaring months before anything changes in my blood work. Many people can, too.

[elephant]

9. Even though it can be expensive to travel, it is your life and Wegener's can kill you pretty fast or slowly silently and sneakily damage your organs. I think it's vital to get to a WG specialist. Learned my lesson.

[Sangye]

10. I second Elephant's #9. Do anything you have to do-- sell your car, house, move, whatever it takes. I have permanent damage because I didn't know about Wegs specialists. There ARE ways, no matter what the obstacle. If you're stuck, ask us. We have lots of info.

In one of the files on the VF website, a Wegs researcher reports that the 5-year mortality rate has improved to 10-20%. (It used to be 90% within 2 yrs) The best chance of staying out of that 10-20% is to get the very best doctors involved as early as possible.

[LilyPony]

Again, thank you all. Its upsetting me dearly each time I read this but you are saving my life and I appreciate it.

[Sangye]

You're welcome. We know it's upsetting-- there's no way around it. It's just so much worse if you don't know.