The Emory Clinic

**jeriorleans** · 09-21-2009, 01:21 PM

Remember me, my 13 yr old son was diagnosed with Wegener's in August. We have an appointment next week with a Dr. Larry Vogler at the Emory Clinic in ATlanta. My son's ENT found him and I found one of his 14 yr old Wegener's patient. He is actually 19 now and loved him. He went from being barely able to walk to running marathons.

How does insurance handle this? I made the appointment myself. I'm going whether they approve it or not, but what do I do to see if it would be approved?

Anyone else every heard of this doctor or the work at the Emory clinic?

**Sangye** · 09-21-2009, 01:33 PM

It depends on your insurance. Mine doesn't require referrals to specialists, but some do. Call Emory and ask them to check on it. They want to get paid, so they're very good at making sure your insurance will cover it ahead of time. I'm very glad to hear you're going. When is the appt?

Doug · 09-21-2009, 05:10 PM

I'm glad to hear you are finding some help for your son, and it sounds like you found him a role model to focus on while healing! Good for you, and, like Sangye said,where there's an issue of payment, doctors are very good about checking up on whether they'll get paid or not. I try not to be cynical about that, because it is good to have that worry out of the way. I try to remember how much time and money they put in to get to the place they are: they earn their keep!

**jola57** · 09-30-2009, 02:15 AM

Let us know how his visit went.

**jeriorleans** · 10-05-2009, 12:59 PM

Well A.J. had his visit with Dr. Vogler at the Emory Clinic. We really liked him. He took him off the Plaquenil and couldn't understand why the doctor in New Orleans had put him on it in the first place. He prescribed Cytoxan and slowly lowering the Predisone. We started 50 mg. today and will work our ways down to 50 every other day (about 3 months). Today is the first day he has taken the Cytoxan. No side effects yet. Hope he doesn't lose his hair because I told him I would shave my head to. (I'm going to look ridiculous, the things you do for your kids!). Dr. Vogler is going to call the doctor here in New Orleans and see if they can work together. Hopefully he won't be insulted that we went for a second opinon. Dr. Vogler has only treated Wegener's 15 times, but from what I understand that is a lot for a pediatric rheumo.

What should I expect with this Cytoxan?

**Sangye** · 10-05-2009, 01:22 PM

Hmmm.... 15 patients is not a lot with Wegs. I'm not sure the fact that he's a ped rheumy makes that much difference, especially since AJ isn't a small child. The disease is still the same, the drugs are the same.

Without lung or kidney involvement, cytoxan might not be necessary. My JH rheumy has told me ctx is overused for milder cases of Wegs.

I still think it'd be a good idea to talk to a Wegs specialist. Ctx is so toxic, it increases the chance of future cancers, and there is a lifetime limit of how much one can take. It also causes infertility, though not 100% of the time. I would hate for you to find out later that it was unnecessary.

AJ probably won't lose all his hair. Sometimes it happens, but usually it just thins out a lot. It usually gets curlier after. Ctx can cause pretty bad nausea and heartburn. Ask us for help if it does. Ctx can also cause profound fatigue.

The pred side effects are probably going to be the worst for him. Weight gain, sweating, mood swings (to put it mildly), blurry vision, shakiness, etc.... The pred will make him feel like he can lift a car, but it's weakening his adrenals, so he'll have to resist the temptation to overexert himself.

I hope he also put him on some type of acid-blocker. Pred causes gastric bleeding at higher doses like that.

**jeriorleans** · 10-05-2009, 01:50 PM

We found out he has nodules in his lungs, so there is lung involvment now. Adult Rheumo won't touch him, not here, not in Atlanta, Something to do with still going through puberty. He is taking Prevacid for the heartburn.

**Sangye** · 10-05-2009, 01:53 PM

Lung nodules? Shoot. Glad to hear he's on prevacid.

I meant consulting with a VF specialist. I remember your docs there wouldn't treat him.

Doug · 10-06-2009, 02:38 AM

Your son's treatment is starting to sound familiar now. I agree, you need to refamiliarize youself with the nature of Cytoxan, its benefits, its drawbacks so you can discuss concerns with your son's doctors with regards its continued or long term use. Even in adults, informed doctors will get patients down to the least amount of the drug that does the patient any good, then take them off the drug as soon as possible, putting them on Cellcept or other less lethal (!) drugs once the patient has started to stabilize and show an improvement on measureables.

Cytoxan (Cyclophosphamide) Drug Information: Uses, Side Effects, Drug Interactions and Warnings at RxList

Above, one site that gives Cytoxan data.

Front Page | Vasculitis Foundation

It won't hurt to repeat this again for you, either. I know it appears other places, as do the other sites I've copied, but these are repeated to save you digging around for them!

Prednisone Information

The next two are on acid-blocking medications, one of which your son doubtlessly will be given at some point to help with the nausea brought about by Cytoxan. The first tells about commonly prescribed acid-blocking medications, and the second goes into the negative effects of using these drugs in combination with other types of drugs and by themselves.

Acid Reflux Medications, Medicines - Drugs for Acid Reflux

naturopathydigest.com -- The Downside of Acid-Blocking Drugs - April 2007

I hope I haven't overloaded you, but it seems younger patients have a rougher time, oftentimes, dealing with the medications than adults, for whom the drugs are no picnic!