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LilyPony
02-23-2010, 07:49 AM
After speaking with the Vasculitis Foundation today, I was able to get a recommendation for a wegs specialist at UNC hospitals (Dr. Mary Dooley). I attempted to make an appointment and was told that my primary had to fax my records there (not a problem) and they would be reviewed to determine my eligibility for an appointment. Then, after that, the soonest they are willing to schedule a new patient is possibly late May but likely not until June and that was if my primary pleaded the urgency of my case.

The wegs specialist at Duke Univ doesn't see patients, only does consults.

Does anyone by any chance know of an independently practicing rheum in the Raleigh NC area who may be taking patients in a better time frame? I am paranoid about the flaring condition I'm in, but its far from an emergency. I haven't been seen by a rheum in 5-6 years and I only saw the one once.

JanW
02-23-2010, 09:18 AM
Hi, LilyPony - A very quick Google search turns up a Dr. Fathima Kabir, who lists among her clinical areas of interest, vasculitis. She may not have WG cases in her load right now (or she may), but she is still going to be more familiar than the average rheumo with this very specific, very rare category of AI diseases. She is at Duke Raleigh, name of practice is Wake Rheumotology. Their may be others if you really drill down in google. I would start there and make very clear that I was calling because of suspicion of Wegeners. When I did this with the ENT, I was in the next day. If she isn't accepting patients, ask whether she can make a recommendation of someone else. I really think that if you can plead your case, you can get someone to see you and get to the bottom of this.

JanW
02-23-2010, 09:24 AM
Another suggestion would be utilizing your insurance company's membership services line (or nurses line) to explain your situation and try to locate a close-to-you doctor. The insurance company certainly doesn't want you to eat up their money getting the run-around either!

Sangye
02-23-2010, 09:39 AM
LilyPony, if it were me, I'd make tracks to JHU in Baltimore or Cleveland Clinic (don't know which is closer to you). Please don't lose time by trying to get in with someone who may or may not be a Wegs specialist. You can always use someone closer to you as your "local" doc, but you really should get the experts involved from the start.

JanW
02-23-2010, 10:05 AM
I agree with Sangye, LilyPony. For some reason, I misremembered and thought you were still trying to get diagnosed. Since you know that WG is what you've got, you need to get to a specialist.

LilyPony
02-23-2010, 01:30 PM
I'm really trying to stay as close to home as possible. As much as I wish we could go straight to the best who'd get me in quickly, there's just not the financial resources to arrange for flights and child care while I'm away. Family could help fund the travel occasionally though not consistently. JanW, thank you for your suggestion of Dr Kabir. The name sounds very familiar to me and I'm wondering if that was the rheum who didn't show up for the appointment. My eventual goal is to get into either the UNC or Duke hospital programs. They both seem to have strong vasculitis specialties, and a few of them at both university hospitals who specialize further in wegs. I plan to check in with Dr. kabir tomorrow and see how far out those appointments are and go from there.

elephant
02-23-2010, 10:43 PM
LilyPony, I hear ya! I live in South Carolina and moved from Illinois five years ago. I have no family down here. I have two small children.
So my mom watched the kids while My husband and I drove to see Carol Langford at the Cleveland clinic. If you only see her once a year it is worth it. That way your local Rheumy can contact her if something progresses. Another thing once Carol Langford see's you she has all your info and can get a good grip on your situation. I saw her back in Oct 2009 and will see her in June.
You will feel a weight off your shoulders once you see a WG specialist. I really wish the best for you. I hope you can get to one soon. See if one of your family members can watch your children for a couple of days and have someone with you. :)

Sangye
02-24-2010, 02:44 AM
Like Elephant says, many people only travel once or twice a year to a major center. It's still far better than not having them on your case at all.

I know it seems like we're nagging (well, okay, we ARE nagging) but it's because we know this stinking disease. We also know what local docs are and aren't capable of providing. We want you to have excellent care-- never being overtreated or undertreated, compassionate docs, etc....

If finances are an issue, there are charitable orgs that fly people for medical care for free. I Googled "Charity Medical Flights" and got several. (After being unable to work for almost 4 yrs, boy can I sympathize with financial difficulty.)

LilyPony
02-24-2010, 03:11 AM
We could probably swing once a year. It was the thought of flying across country every month or two that was too much for any of us to tackle. I spoke with the ENT this morning, who had spoken with the wegs specialist yesterday. I have the chest xray thurs and various scopings next thursday. He expects all the bloodwork to be back by then as well. The wegs specialist will review everything and determine how urgent it is that I be seen. He said if I needed to be seen the next day that she would get me in. I tentatively feel good about today's news.

The other good thing is that I'm having a good day. I'm breathing "normal" and my vision has improved dramatically over yesterday. I'm just so thankful for the little things!

Sangye
02-24-2010, 03:26 AM
Even in the middle of a major flare, I only need to see my Wegs doc every 2-3 months. You can have most tests and procedures done locally. The docs at major centers are accustomed to working with patients in this way.

Isn't it funny how serious illness changes your perspective? "Little things" like vision and breathing... LOL Glad you're having a good day today!

elephant
02-24-2010, 10:17 AM
I know it. Today I appreciate that I can breath even stuffed up. Lily Pony hope things get better. It is a ten hour drive from south carolina to Ohio. We are trying to arrange family to take care of the kids when we go in June.

stikker
03-12-2010, 07:17 PM
I can't agree more about getting a specialist. I just had my first appointment with Dr Merkel at Boston Medical Center and it was as awesome experience. I feel much more positive. He will consult and I will see him quarterly. I have joined his research study. He wants me off the 60 mg prednisone (taper immediatly) and off cytoxan in 3-4 months instead of 6 months. I LOVE HIM!!!!!!!!!
I feel so much better about my future. I'm not even sure why, all we did was talk but my outlook is completely different.
I managed to get an appointment in a couple of weeks. I agree. Get to one even if you have to travel. It is worth it.
stikker

renidrag
03-12-2010, 10:20 PM
glad to hear that Stikker, good luck

elephant
03-12-2010, 10:30 PM
Stikker, I am so glad you went! Yes, when I went to my WG specialist I felt like I was taken care of. So glad they are weaning the Prednisone and getting you off cytoxan...are they going to put you on another med to replace the cytoxan?

JanW
03-13-2010, 12:39 AM
That's great, Stikker. I saw Merkel on some VF video on their website and was very impressed. He sounded so knowledgeable and also like a very nice guy.

Sangye
03-13-2010, 01:00 AM
Whooya! I'm so happy you saw Dr Merkel, Stikker. It's hard to describe what a difference it makes to have a Wegs specialist to talk to and guide your care. I was exactly the same after my first appt with Dr Seo (JHU Wegs doc). I felt safe, cared for and understood immediately. I didn't have to carry everything alone anymore.

I hope you'll continue to share with others on here why it's so important to have a Wegs doc.

stikker
03-13-2010, 11:57 PM
When I come off the Cytoxan he said he would put me on Azathioprine. I will have to have a TPMT blood test first. To see if I can take it I guess. I have't investigated it yet.
Does anyone else take this and are the side effects better or worse. Seems odd that I don't seem to see it mentioned here.
stikker

elephant
03-14-2010, 12:27 AM
Azathioprine is Imuran. I took it and had a adverse reaction it to it. But, in retrospect it was a good thing I took it, I was rushed to the ER and went down hill pretty fast and with all the work up that I had..they found the lung nodule. So that meant the medicine's were not working for me. Anyways, there are people on this forum who take it. It works well for some. Everyone is different....Cellcept seems to work for me so far. Cross fingers and toes...

Sangye
03-14-2010, 12:44 AM
Stikker, imuran is a very common drug used to maintain remission or to transition from ctx. Some people can't take it because of a genetic glitch that makes it overly toxic. The TMTP test screens for that. It can be hard on the liver, so while you're on it they routinely check liver function via blood work. Like Elephant says, many people tolerate it just fine and stay on it for years, like mtx.

Imuran, mtx and ctx are chemo drugs. Ctx is by far the most toxic, even at Wegs doses.

Jack
03-14-2010, 04:51 AM
I tolerated it well. It is far less toxic than Cyclophosphamide for most and you will probably only be taking it for a few months before switching to something like Myfortic.