PDA

View Full Version : Wegener's specialists in the southeast?



jenjenn711
06-08-2010, 08:18 AM
Hi! My dad was diagnosed with Wegener's a few years ago and has been in remission for a long time. Now, though, he has developed some persistent respiratory issues and we are pretty much certain this is a relapse. He went to the doctor today and they did bloodwork and a chest x-ray, and we'll know more later, but for now the doctor has put him back on his meds. When he was initially diagnosed we could not convince the doctor there was more wrong than just a "sinus infection" and after multiple rounds of antibiotics, he finally ended up in the ICU (with vasculitis, kidney failure, etc) and nearly died before someone recognized what he had as Wegener's.

Sorry to ramble. The point is, this time around we want to be sure his doctor is really knowledgeable about this disease. We are in South Carolina. He is seeing a rheumatologist and we are hopeful that he is going to take good care of my dad. But for those of you in the southeast, who do you see? Who would you never consider going back to? Do most of you see rheumatologists for Wegener's or is there another type of doctor that is better? Any input would be much appreciated. I am going to try to talk my dad into joining this group but he is really not into doing things online.

Thanks!

Jenny

elephant
06-08-2010, 10:25 AM
Hi Jenny I live around Greenville South Carolina and I drive to the Cleveland Clinic to see Dr Carol Langford ( wegeners specialist). She is great. First I started at MUSC, but they did not see that many wegeners patients and I felt that I was not getting proper treatment. I do see a really good local Rhuemy in Greenville,SC . If there is anyway I can help let me know. Sorry to hear that about your dad. Be persistant about getting a Rhuemy to see your dad at the hosptial or have the doctor call any of the Rhuematologis who specializes in wegeners. Under the Vasculits Foundation.

Sangye
06-09-2010, 12:40 AM
Hi Jenny, glad you found our group! Even if your dad doesn't join in, you can help him a lot by participating.

Your dad definitely needs a Wegs specialist (a rheumy who sees hundreds of people with Wegs). There are a couple different ways to do it:
1) Travel to a vasculitis center and be treated directly by a Wegs doc. The Wegs doc can work with a local rheumy to care for you. This usually involves traveling quarterly until the disease is under control, and then only once or twice a year. This is what Elephant does. It's the best option, because you're able to talk with the Wegs doc directly.

or 2) Find the best local rheumy you can and have him/her consult with a VF doc regularly. This is much better than nothing, but the downside is you have no direct contact with the Wegs doc. You can't ask questions and they don't see you in person. It's not ideal. This option only works if your local rheumy is able to subjugate his/her ego and let the Wegs doc oversee your care.

The vasculitis centers in the US are: Cleveland Clinic, Johns Hopkins (Baltimore), Boston University, Mayo (Rochester)

wgrebel
06-10-2010, 01:24 PM
Dr Stephen Capizzi, MD is a Vasculitis Foundation Consultant and Wegener's specialist in Nashville, TN. The phone number is 615-284-5098 & the address is:

Mid State Pulmonary Associates
300 20th Avenue North, Ste 503
Nashville, TN 37203

He has been wonderful to me. He is an honest, straighforward doctor. You can go to the vasculitis foundation website and get his info also. He answers calls on the weekends & his office will get back to you. I see Dr. Capizzi every two months (April/June/August/October/December) & I see my rheumatologist (March/May/July/September/November) this year and I will continue this round of treatment in 2011. I hope this helps.

nebs
11-12-2010, 05:59 AM
Hi Jenny I live around Greenville South Carolina and I drive to the Cleveland Clinic to see Dr Carol Langford ( wegeners specialist). She is great. First I started at MUSC, but they did not see that many wegeners patients and I felt that I was not getting proper treatment. I do see a really good local Rhuemy in Greenville,SC . If there is anyway I can help let me know. Sorry to hear that about your dad. Be persistant about getting a Rhuemy to see your dad at the hosptial or have the doctor call any of the Rhuematologis who specializes in wegeners. Under the Vasculits Foundation.

I may have replied to your message already (I'm having trouble maneuvering)! My nephew lives in Greenville, SC and was just diagnosed with WG. He wants to get a 2nd opinion from a specialist. Did you try anyone nearer to you before going to Cleveland? Also who is the Rheumatologist you like there in Greenville? I live in Cleveland so Dr. Langford may be an option if he can leave his job to get up here. Any other useful info would be appreciated, thanks!

JanW
11-12-2010, 09:57 AM
To just add to Sangye's list (although I know this isn't the Southeast) -- University of Utah and Cedars Sinai (LA) are now establishing vasculitis centers as well. I know Utah's is up and running -- not sure about CS.

They've also added some new specialists on the VF website since this last time I've been on -- including the guy down the hall from my rheumy, so that's good news.

Hakman
11-13-2010, 05:41 AM
My son had just been diagnosed. He lives in Greenville. How could he contact you?



Hi Jenny I live around Greenville South Carolina and I drive to the Cleveland Clinic to see Dr Carol Langford ( wegeners specialist). She is great. First I started at MUSC, but they did not see that many wegeners patients and I felt that I was not getting proper treatment. I do see a really good local Rhuemy in Greenville,SC . If there is anyway I can help let me know. Sorry to hear that about your dad. Be persistant about getting a Rhuemy to see your dad at the hosptial or have the doctor call any of the Rhuematologis who specializes in wegeners. Under the Vasculits Foundation.

elephant
11-13-2010, 06:32 AM
How old is your son? If he is younger than 17 years old then he has to see a pediatric Rheumatologist. I think there is one down in Charleston,SC at MUSC. Is he seeing a Rhuematoligst here in Greenville,SC?

Hakman
11-14-2010, 04:14 AM
He is 30. He started his meds last Friday. His general doctor recommended MUSC because of Rheumatology, but she was open to sending him anywhere. We believe he should go to a Weg specialist. My sister lives in Cleveland so we got him an appointment at Clev Clinic next Friday. My number is 404.512.9490 and would enjoy speaking to you about your journey. He did not like the Rhem doc they assigned while he was at Greenville Memorial last week, so he has another at the recommendation of his gen doc, Doc Green. Thank you

Jack
11-14-2010, 04:27 AM
Hi Hakman, hope you don't mind me mentioning, but I think you should edit out your phone number and issue it using the Private Messaging system. There are some funny people about on the internet and some probably even read these pages! ;)

Hakmanson
11-14-2010, 05:13 PM
Hello this is Hakmans son and Nebs nephew! My name is Josh and I was supposively diagnosed with WG after being in the hospital for 2 weeks....I am wanting to go to the Cleveland Clinic....my question to any of you would be do I have to see Dr. Langford? Are the other Dr's there that come up under WG just as qualified? Do they all interact with eachother? Thanks for any response~

elephant
11-15-2010, 12:21 AM
Hi Hakmanson, I sent you a message. Yes, I highly recommend Dr Carol Langford, you need a Wegeners specialist. You can also go under the Vasculitis Foundation and see a list of docs. My local doctor will call Dr Langford if we need her expertise. I see Dr Carol Lanford once a year.
If you don't mind me asking what symtoms were you having and what meds are you taking?

Hakmanson
11-15-2010, 02:39 AM
I am seeing Funerio here in Greenville....Cytoxin, Prednison, Septra, Calcium, Iron, and Protonix....then there is some meds that help me sleep because I am UP and EATING all of the time!

elephant
11-15-2010, 03:18 AM
That is normal, you are probably on 60 mg prednisone....I could not stop eating...but now I am down to 6 mg of prednisone and finally back to my normal weight! I didn't sleep either, only 1-2 hrs a night. I had to take a nap because I was a walking zombie!

Hakmanson
11-15-2010, 03:37 AM
100mg of pred and 150mg cytoxin

Sangye
11-15-2010, 03:52 AM
You really need a Wegs specialist. 100mg of pred is WAY too high a dose to stay on for longer than a few days (less than a week). The normal is to drop to 60mg and only stay there for a short time before dropping lower and lower.

Hakmanson
11-15-2010, 03:56 AM
Maybe its only until I see my Dr's that I am on that high of pred....They made appts for me while in hospital so I am just going when they told me to go

elephant
11-15-2010, 04:05 AM
Hakmanson, that is high prednisone. They usually start off with 60mg, not 100mg. Can you see your local Rhuematologist sooner? Or mabey leave a message with the nurse re: prednisone?

Hakmanson
11-15-2010, 07:23 AM
I am going to try and see if I can get in with Rhuem here this week....they told me I was on the dose of pred because my kidneys had too much inflamation...neph dr told me this

drz
11-19-2010, 06:43 AM
I am going to try and see if I can get in with Rhuem here this week....they told me I was on the dose of pred because my kidneys had too much inflamation...neph dr told me this
High dosages of steroids are often used in inpatient care to try save organs or stop internal bleeding but then you are closely monitored. Is someone following you closely to see how you are doing so they can make changes if needed.

Hakmanson
11-19-2010, 03:27 PM
No and that has been my complaint to all of my Dr's....I've been on the meds since 11/8 and don't see a single Dr until Dec 9th! Is that too long? I've tried and tried to get in earlier and even on cancelation list. Before I left the hospital, the hospital is the one that made all of my appointments

drz
11-20-2010, 10:19 AM
No and that has been my complaint to all of my Dr's....I've been on the meds since 11/8 and don't see a single Dr until Dec 9th! Is that too long? I've tried and tried to get in earlier and even on cancelation list. Before I left the hospital, the hospital is the one that made all of my appointments

I wouldn't be happy with that scheduling. I left hospital after two day stay on Nov 17th and have one follow up set for Nov 29. I was also refered to another specialist and contacted her this morning and saw her this afternoon. I did have to cancel my appoinment with my rheumatologist on 17th while in hospital and it is rescheduled for Dec 8. However he is monitoring my lab results every three or four days and adjusting my meds as needed so I feel comfortable that I am am being followed adequately.

Is there anyone to help you that is good at working the system?

elephant
11-20-2010, 12:44 PM
Hakmanson, I hope you were able to call either the kidney doctor or rheumatologist ( the one that your going to see) and leave a message with her nurse. They are nice there.

amy.r.kahl
12-06-2014, 07:56 AM
Hello fellow WG
This is the first time I'm actually doing anything like this. I've been embarrassed about being sick. I was a nurse and it definitely has changed my life. I spent the whole summer in the hospital here in cape Girardeau mo with lung nodules they didn't know what it was and put me in isolation for over 18 days it was horrible. They finally did a lung biopsy and sent it to the Mayo clinic who diagnosed me with WG. The doctors then transferred me to Barnes to Dr. Parks who then did her own testing and finally agreed with the Mayo clinic. For my 26th bday I started my first round of chemotherapy cytoxin which made my bladder bleed so that was about a month meanwhile she increased my dosage of prednisone from 20mg upto 60mg as well as starting me on imuran which affected my kidney function after a week I couldn't void it was horrible. And the prednisone completely made me a different person it changed my personality I was angry all the time. I hated God. And I was angry at my family cuz I'm the baby and spoiled and was used to being protected and then being able to make it better. My mom is a nurse as well so this has been hard on her. But I completely changed I went into s downward spiral I hated everything and everyone for taking everything I worked for I went from being in charge of everything in my life to having no say. While on prednisone I broke the law I was writing bad checks and I got into trouble and got put on probation. That didn't wake me up I was still angry with God and didn't care about living anymore. So I continued my self-destructive ways and ended up in prison. While destroying myself the doc put me on rituxan it helped my lungs I no longer needed my oxygen tank it's only prn now. When I went to prison they took me off all my meds and my anger and hate levels went down. I had night terrors coming off the steroids. And my moon face went away and the 80lbs I gained went down I've lost 30lbs I'm still working on the other 50. But I no longer hate God and I've began to accept being sick. I felt like I could finally see and think clearly and normally after being off the prednisone. The physiologist said I had a serve bad reaction to the medication. I will never take it again I even want to advocate for infants being tested at birth for autoimmune diseases. I feel knowing at the beginning would have prevented a lot of my pain. And if I can help prevent others from the pain I will. Anyways I am now having serve sinus infections and my ENT a wonderful dr. He believes it's the WG. However my rheum dr believes I only have WG in my lungs and has only given me 3 dosages of rituxan and does not seem to have a treatment plan for me. She says that there are no treatment plans for ppl with WG because it's so rare. So I'm thinking I need a specialist because she doesn't want to listen to my concerns or my ents concerns. I feel she treats me differently bc I went to prison my other doctors know and they are understanding and I go to therapy and I'm in s better state of mind but I she makes comments like I've never had the cops call me like she was embarrassed that a patient of hers was in jail. She is the head of the dept but when I was in nursing school I as taught and promised to help even a murderer without judgement. I have paid for my mistakes. But I also feel she should have noticed my irrational behavior I would throw med students out of the room and scream at them. I was horrible. She will now admit to me not being suitable for prednisone but it took me completely losing my mind and myself and another doctor telling her that. I have a hard time meeting new doctors I have trust issues because I had so many of them come and look at me like a lab rat when I was in the hospital. I feel I should get a second opinion from a specialist but I'm just scared that they will be worse. So I guess I'm asking if I should stay with her or go to a new doctor ???
Thanks
Amy


Sent from my iPhone using Tapatalk

Dirty Don
12-07-2014, 05:52 AM
Welcome Amy, glad you found us, you'll find much help, caring, and advice on here. You definitely need a 2nd opinion. And, you need to make sure your docs know WG/AI diseases. If they don't, they are reading out of a book and you are their guinea pig. They can consult Vasculitis centers all over the world if they want...you need to ask them if they are. NO guessing here, it's a guessing game anyway cuz docs don't know this disease. Also, you need to put this note on the Forum under newbies! Thanks, and best to you!