New and need advise on Melbourne specialist

[Belinda]

Hi,

I am newly diagnosed after 1 year of having all the symptoms of wegeners. I am being treated by a rheumatologist, but I have been reading up on treatment and I am trying to find an experienced doctor in Melbourne (Australia) who handles wegeners on a regular basis. I am currenlty on 20 mg methotrexate, 15mg pred.

I had pnuemonia 3 years ago, followed by constant chest and sinus infection. This settled into permanent sinusitus, inflamation in the airways, and now soreness and swelling behind the eyes, along with standard joint pain. My kidneys are currenly being tested - I am hoping they are ok.

My current rheumatogist is very good and well regarded, but on the youngist side (I am being age-ish - I know!) and would not have seen many wegeners cases.

Any advise would be welcome!

[drz]

Hi,

I am newly diagnosed after 1 year of having all the symptoms of wegeners. I am being treated by a rheumatologist, but I have been reading up on treatment and I am trying to find an experienced doctor in Melbourne (Australia) who handles wegeners on a regular basis. I am currenlty on 20 mg methotrexate, 15mg pred.



I had pnuemonia 3 years ago, followed by constant chest and sinus infection. This settled into permanent sinusitus, inflamation in the airways, and now soreness and swelling behind the eyes, along with standard joint pain. My kidneys are currenly being tested - I am hoping they are ok.

My current rheumatogist is very good and well regarded, but on the youngist side (I am being age-ish - I know!) and would not have seen many wegeners cases.

Any advise would be welcome!

Welcome to our forum. Thanks for joining.

I would suggest getting an eval from a lung and and ENT doctor to see if they can help with the infections. Infections are not good when you have Wegs. Then work on getting Wegs under control. The joint pain often goes away with treatment of the Wegs.

If you can't get an experienced doctor there ask the one you have to consult with Vasculitis foundation and get some one to review your case for treatment recommendations.

[NicShaf]

Hi Belinda, welcome to the site!

Have you had any lung involvement? Or so far has Wegs mostly effected your sinus' and joints?

How long have you been on MTX & Preds?

[Belinda]

Thanks for the welcome.

My lungs have been hurting consistently for the past 6 months. I recently has a CT scan and it was clear, but the lung function test indicated lung parenchymal or pulmonary vascular dysfunction. This test was clear 18 months ago. I am seeing my respiritory specialist next Tuesday to discuss the results and I have been getting plasma infusion on a monthly basis for the past year.

I have been on pred for 4 months - but just on between 10 - 20 mgs to see if methotrexate would help, and I have been on methotrexate for 6 weeks. I think it has definetly helped the servere sinus headaches I would get every single day. I still get headaches, but not as bad, but I had a lot of pressure behind my eyes, (and swelling). I have had it checked out by a specialist who said it was because of the swollen sinuses.

[mishb]

Hi Belinda
I was initially diagnosed in September 2010 by a local ENT and then sent to the Alfred Hospital for specialist ENT consult, nasal biopsy and now currently awaiting Rheumatology consult all via the Alfred outpatients. I asked the ENT how many people they see with WG and he said "many many". The Alfred (as far as I can tell) run an outpatients clinic in Rheumatology for Vasculitis and WG patients on a Monday and a Friday (I think) so therefore must have 'many many' as the ENT said. Only problem is, because I don't have health insurance, the wait and the triage has been about 6 weeks in between each specialist appointment.
I live near the Mt Dandenongs so the drive in takes a while but so far has been worth it. Check out the Wegeners Australia site, they have a list of doctors that are currently seeing WG patients. I think some on here also go to Monash.
Not sure what area you live in but I hope this helps .... and try to read posts on this site, you will find most on here with vast amounts of knowledge.
Take care of yourself
Michelle

[Sangye]

Hi Belinda, welcome to the group! We have a bunch of Aussies on here, including our fearless leader Andrew (who is unusually quiet these days). I'm glad mishb could give you suggestions about Wegs docs near you-- very important to see someone who treats lots of Weggies.

[Belinda]

Thank you so much for the warm welcome. Sorry it has taken a while to respond. I have been in a place for the past 3 days where there has been no internet/phone access. I have a good rheumatologist, but I don't think she has had must experience with wegeners, I feel she is treating me by the 'book'. She is happy for me to call her at any time if any new symtoms come up at anytime, so I have a good relationship with her. I also have a very good General Practioner. I have an appointment with the head of rheum at one of the big hospitals (Austin) where they run a vascular clinic. A friend of mine who is an oncologist told me he manages patients with wegeners. My appointment is in two months. So far I have not really heard of any other specialist in Melbourne who deals in wegs - though I am sure they are out there.

However your message, Michelle, has made me realise that wegeners is being treated at the vaculitus clinics, so I think I might be on the right track.

[Sangye]

I've never heard of an oncologist managing Wegs. Maybe just administering IV cytoxan, but not managing the actual disease. I hope you can connect with the vasculitis clinic.

[Belinda]

Sorry - I didn't explain myself very well - my friend, who is an oncologist, told me about a Doctor who is head of a Rheum. practice at a large hospital which has a vaculitus clinic. It is this Doctor that I have an appointment with in a few months. He has experience with wegs patients.

I think I need to re-read my entries before I send them!

[janene]

Dear Belinda
I see Dr Simon Lam in Ivanhoe. My visits to the hospital are through Austin. Everyone has been fantastic. Its taken 14 months but I am now reducing medication and beginning to feel like I can get past it . Once when I was unwell and my husband was very stressed by seeing me ill, they put me into hospital with 1/2 days notice. stayed for 5 days and they ran every test possible to make sure they hadnt missed something. Came out feeling great.
janene