Hello from Ontario, Canada

[Tanya]

I was diagnosed in April 2013. It hit my kidneys first and I was started on Prednisone and Immuran. At the time the nephrologist told me I'd be on the prednisone for a few months and the Immuran for a year then I'd be weaned off both, I'd be in remission for 20 years and life would be great. Well 2 1/2 years later I'm still on both and my sinuses are now in the mix so more drugs for that. My kidney function had been stable but over the past couple of weeks has started to decline.
my GP suggested that I might have depression when in frustration I started crying in her office.
the nephrologist doesn't seem to know what to do with me. Despite complaints of symptoms in other parts of my body, he has maintained that since kidney function was stable things must be good. And he doesn't want to switch drugs because the next step is chemotherapy.
I saw from the map there are a few people in the area... Do you have a good specialist who really knows wegeners? Please pass on the names for me, I'm in the GTA.
frustrated in Ontario

[vdub]

I'm sorry you're having so much trouble, Tanya! Sadly, it is what it is.... Some people will have it easier than others and some have a really bad time. You seem to be in the "bad time" group. Generally, however, things get better, at least from time-to-time. Make the most of your good times and try to stay positive during your bad times.

As for your basic question of a good rheumy in your area.... Is GTA the Greater Toronto Area? If so, you are in luck. Mt Sinai hospital is one of the best in the world. Dr Kathy Siminovithch is at Mt Sinai and is a leading researcher for Wegs. Good luck!

[Tanya]

Yes, greater Toronto area.

[annekat]

Welcome, Tanya. With kidney involvement, it seems like you should have been started on something stronger than Immuran, which I'm not sure isn't chemo, just in oral form. Many are started on oral cyclophosphamide, also chemotherapy, which is a heavier hitter for severe cases. Then there is rituximab, given in infusions, and not technically chemo, I don't think, though it may be called that, and often considered the best choice these days. I am not a doctor, just going by everything I've read on here. In any case, it does sound like you need more of an expert in the disease, and the one that vdub suggested is probably an excellent choice, if you can get in to see her. Best of luck with everything!

[Birdie]

I was diagnosed in April 2013. It hit my kidneys first and I was started on Prednisone and Immuran. At the time the nephrologist told me I'd be on the prednisone for a few months and the Immuran for a year then I'd be weaned off both, I'd be in remission for 20 years and life would be great. Well 2 1/2 years later I'm still on both and my sinuses are now in the mix so more drugs for that. My kidney function had been stable but over the past couple of weeks has started to decline.
my GP suggested that I might have depression when in frustration I started crying in her office.
the nephrologist doesn't seem to know what to do with me. Despite complaints of symptoms in other parts of my body, he has maintained that since kidney function was stable things must be good. And he doesn't want to switch drugs because the next step is chemotherapy.


Hi Tanya,

Patients should be given the broad range of possible results of treatment. After that, educated guessing is OK. I question the knowledge of a doctor who makes predicitions concerning how long you'll be on a given treatment and how quickly you will respond, without first explaining the range of possibilities. On that alone you're in need of a second opinion at the very least.

People respond differently to Wegener's and medication. I suggest finding out what indicators apply to your case, your body. After two and a half years there should be plenty of blood test results. I'm currently studying those for myself and learning quite a bit in the process. I hope to find a way of predicting Wegener's activity specific to me. Once you know the indicators you'll know how well the treatment is working, and be able to make wise decisions about changing treatment. You'll be more confident, more in control and feel less like a victim.

The only thing I know about kidney problems is don't ignore even the possibility. Wegener's and the medications we take can do a lot of harm in a relatively short time. You must be your own advocate, demand action even while upset and or crying and or depressed. To this end, bring friends and family to doctors appointments. More eyes, ears and minds will make for better health care.

[Christina32]

Hey Tanya! I'm out here on the westcoast. Mt Sinai will be the best place for you - along with the doc vdub mentioned there's leading vasculitis/wegeners specialists Dr. Carette and Dr. Pagnoux.

[annekat]

Tanya, you might also like to know, there have been two others from Ontario joining the forum in the last week or so, if I'm not mistaken! Their posts should be fairly close to yours under New Members Introductions.

[drz]

Hi Tanya,

Patients should be given the broad range of possible results of treatment. After that, educated guessing is OK. I question the knowledge of a doctor who makes predicitions concerning how long you'll be on a given treatment and how quickly you will respond, without first explaining the range of possibilities. On that alone you're in need of a second opinion at the very least.

People respond differently to Wegener's and medication. I suggest finding out what indicators apply to your case, your body. After two and a half years there should be plenty of blood test results. I'm currently studying those for myself and learning quite a bit in the process. I hope to find a way of predicting Wegener's activity specific to me. Once you know the indicators you'll know how well the treatment is working, and be able to make wise decisions about changing treatment. You'll be more confident, more in control and feel less like a victim.

The only thing I know about kidney problems is don't ignore even the possibility. Wegener's and the medications we take can do a lot of harm in a relatively short time. You must be your own advocate, demand action even while upset and or crying and or depressed. To this end, bring friends and family to doctors appointments. More eyes, ears and minds will make for better health care.

Jack frequently reminded people to be vigilant about kidneys and how one could lose them in the matter of a few days, which I believe was his experience.

[Tanya]

When I first got sick they misdiagnosed me with a UTI, then said kidney stones, by the time they did blood work the damage was done. I had 3 episodes of blood in urine before they did a biopsy and diagnosed WG... Took from Dec to April before I was diagnosed.
nephrologist has warned that one more attack on the kidneys could be the end of them... But at the same time I feel he is not managing the drugs well enough to get me into remission. I asked GP if there was another specialist who might be better at dealing with WG, but she said the only option is another nephrologist and they all share an office, so they likely won't have a different answer.
im going to call the Mt Sinai offices in the morning and see how to best proceed.

[Christina32]

Try to reach one of the above mentioned. There's another great wegs specialist there as well but his name isn't coming to me. When trying to locate 'the best' wegeners specialist here it led me to Dr. Carette. A simple referral from my gp got me there. I believe he books 5 weeks in advance although I'm sure this is everchanging. You are in a great place to have access to great doctors who won't hesitate when answering questions. This can be very relieving depending on your journey. I wish you well :-)

christina

[vdub]

Here's an article about Dr Siminovitch's work....
https://secure.e2rm.com/registrant/tribute.aspx?eventid=109949&langpref=en-CA&Referrer=https%3a%2f%2fwww.google.com%2f

[annekat]

It's been mentioned on here a few times that if you are trying to get in to see a specialist who is booked way in advance, be sure to call in regularly for any possible cancellations!