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Does anyone have a recommendation for a good WG doctor in MA, preferably Western MA? My sister is in the early stages of diagnosis and is currently being treated by a fancy eye doctor (can't remember his real title) because her symptoms first presented in her eyes (and sinuses). Should she continue with him or go to a rheumotolgist?
Many thanks,
S
Hi Stacey,
Sorry I can't help at all, being from Australia, but I do hope you sister gets the correct treatment.
Thankyou for being on here - and there for your sister
She should find a good rheumatoid Guy ASAP. I wish I could help her find one, the main thing is to confirm the diagnosis quickly so they can get it under control, just make sure they have experience with vascular conditions like WG.
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Massachusetts General in Boston has an excellent vasculitis program. Dr. John Stone who practices there was the doctor who was instrumental in using rituxan in early clinical trials. I do not have any personal experiences with him or the program, but have read about it. Hope this helps.
Hi Stacey, its nice that you are looking out for your sis and joining the forum. I go to the Cleveland clinic and see a rhuematologist there but he also told me that Boston has excellant drs. there. If her involvement is in her sinuses she will also need to see an ent and by the time its over with there will be a slew of drs. that she will visit. You can check out the Vaculitisis Foundation website to try to find a dr. But make sure where ever you go they have knowledge of wegeners. Best of luck to her..things will get better .Its just a rough start
I have seen Dr. Stone at Mass General and liked him very much but due to insurance requirements I could not continue with him. A year later I ended up at Boston Medical Center and Dr. Paul Monach, he is a great guy and I visit him once a year. I am in remission so I don't have to go as often. It would be worth the drive and then perhaps he would communicate with your local docs. I know he has patients as far north as Maine.
Dale
Looks like you had a fairly quick remission after initial diagnosis, renidrag. What med regiment were you prescrnbed, if you don't mind my asking?
Day of diagnosis I was put on 60mg Prednisone, 100mg Cyclophosphamide (Cytoxan), Bactrim and Omaprezole. That occurred on August 14, 2009, was off Prednisone on February 12, 2010 and off Cyclo June 30, 2010. I remain one of the lucky ones. My involvement was in lungs only. I meet with Doctor Monach today.
Dale
Thank you for sharing your med info. Continued good health for you, renidrag.
Before I was diagnosed, one of my symptoms was fleeting double vision.
I was referred to an optomologist.
This quack took a quick look at my eyes and told me to give up smoking!!!!!!
No more than 5 minutes later paying $135.00 and left.
This condition worsened rapidly and I almost lost my vision.
Im still angry 5 years later.
Treat the eye symptoms immediately to save her vision and then then see a Weg expert for consultation and/or on-going follow-up. The Diverticulitis Foundation list is good place to start to find a doctor with Weg experience.Quote:
Originally Posted by Staceyje
I am also a patient of Dr.Monach. It's a haul getting to Boston from Western Mass, but it's worth the trip. I see him every 3 months and my wife and I make a day of it. After the appointment we'll take a ride up to the north shore and grab a bite to eat, or stay in the city and find stuff to do.
He's a great doctor and a heck of a nice guy. I'd gladly drive twice as far if I had to.