New Zealand

[Barbara Kiely]

Hi There everyone,
Thank you for this wonderful resource. I have already found some very useful information here.
I was diagnosed in May of last year after three separate sinus surgeries. Finally my ENT guy did a biopsy. I was initially very excited to have a diagnosis after two and half years of chronic sinus infections etc. But now it is nearly a year later and I am not feeling any better. I am on 25mg of Methotrexate and have dropped down to 9mg of Prednisone after a high of 60mg. I have struggled with the prednisone, particularly mood issues. A close relation had a psychotic episode after taking prednisone so it is something I have been very aware of. I still have face pain and have developed a cough. I have several hot flushes day and night. My Immunologist says that I the methotrexate is the best drug for me at the moment as my Wegeners is localised, but I strongly believe it is not inducing a remission. I have had a lung x-ray since last seeing her, and a Sinus CT scan so I am hoping something shows up that backs up my feeling. I have an appointment tomorrow.
My ENT has referred me on to a Respiratory doctor because of the cough. My lung function test were normal as was my Lung CT. I feel like I have had most every diagnostic test going. I do not feel very good about that. I live in New Zealand which has a total population of about 4 million, so it is hard to gauge how much experience anyone here has with this illness. I feel frustrated and a little depressed that this is the "new normal" some of you talk about. I am sixty years old this year and had been looking forward to an active retirement with my husband. Now my energy levels are so low I cant imagine doing anything active

[mishb]

Hi Barbara and welcome to the forum

It does get better and I believe that you will have the retirement with your husband, that you planned, unfortunately it takes time.

What area of NZ do you live in?
Are you aware of the Vasculitis Support NZ website. I think they also have a facebook page, (if you are on facebook).

I will be in Auckland next month, and there are plans for a vasculitis catch up, for a coffee and a bite to eat, whilst I am over there. I hope you live nearby.
Also if you are on facebook, we have an Australia & New Zealand vasculitis group, and I think we have about 20 NZ members, with many of them receiving adequate treatment.

I am on Methotrexate 20mg, and now down to 1mg prednisolone. Been on these for the past 6 years or so, and both have been my lifesaver.
There are other options to MTX, and they have been known to get people in to remission. Can you mention Rituximab (or Rituxan) to your Immunologist tomorrow, and see what she thinks, as an alternative to Methotrexate.

Good luck for tomorrow, I hope you get some answers

[Alysia]

Welcome to the forum, Barbara.

I was on methotraxat for months but it did nothing to me. Then I switched to rituximab which works fine.

If you have symptoms of wg activity, then maybe the mtx is not doing what it should do.

Docs sometimes make a mistake of "localised" or "limited" wg and give a less serious treatment in these cases. Actually every wg must be treated to diminsh its activity. Some cases need stronger meds.

Please update us.

[Barbara Kiely]

Hi Michelle,
I live in Auckland. A catch up would be nice. The NZ support group website does not seem very active. I am on FB but not a very active user, but will definitely look up the page.
I went to the Immunologist yesterday. The CT scan showed that a lot of the sinuses,especially on the right side of my face are all blocked and full of fluid. I have been telling her and my ENT for six months that the sinuses are not right, so I was very glad to confirm there were still problems. She is now discussing it with my ENT. In the mean time she has put me on 2 week course of augmentin for infection.
The way the health funding works here is that I will not be able to use Rituximab till all other options are exhausted which means a course of Cyclophosphamide. The Immunologist is still hopeful the methotrexate is doing its job and that my health problems are caused by the side affects of the drugs. It seems a long road, meanwhile all the testing is time consuming a tiring.
On a brighter note I am off to Sydney this weekend to see family and to watch Patti Smith in Concert. I have bought nasal sprays and eye drops to make the plane trip as comfortable as possible.

[mishb]

It's basically the same in Oz to Barbara.
You have to have tried and failed the others first before Rituximab, but in some cases it is actually the first port of call.

Do you do sinus rinses? These are very important to keep the blockages away.

The catch up will be the 6th or 7th May, and will be somewhere in the CBD. All still to be decided.
It's a pity you aren't coming to Melbourne. We have a big coffee and lunch catch up next week, for Easter. Apart 20 people so far.

Below is the link to the Oz and NZ facebook group.

https://www.facebook.com/groups/516643745050360/

[Alysia]

I must say that in my humble opinion the weggies of OZ are in the best shape, compared to others on the globe, and I think that Michelle's group is one BIG reason for that :)

[mishb]

I must say that in my humble opinion the weggies of OZ are in the best shape, compared to others on the globe, and I think that Michelle's group is one BIG reason for that :)

Lol, thanks for saying so, but it has nothing to do with me.
I love our group and the awesome people who are in there.

I think it just comes down to our medical system or; our members advising which specialists to see, and which ones to avoid.