New from Calgary, Canada

[gurinbasra]

Hi Everyone,

I was diagnosed with WG in October 2008 and it's still not quite in remission! I've had symptoms in my eye and ears since my last pregnancy in 1998 but all symptoms seemed to be controlled, until I started to lose my hearing in August 2008. Right away, my ENT dr. said that the hearing loss was due to an autoimmune disorder and he put me on our good friend Prednisone which helped - but only for a while.

In the meantime, he did some bloodwork where everything came up positive but he did do an ANCA test as well as I reminded him of a WG patient had a few years previously as he suspected WG and a sinus biopsy confirmed this. Within a month of getting sick - losing my hearing and getting very sick in just the sinus area, I was taking Methotrexate and Pred - a bad choice from the Rhuemy I was seeing as my ENT dr wanted to know why I wasn't on chemo - he warned her that I'd become deaf if she wasn't able to control the WG. Finally, after 3 unsuccessful months of just Metho, I was on Cycolphosphomide infusions and long story short, I was one of the 10% of people who just don't respond to chemo.

So, after two years of being on 60mg of Prednisone and the WG still not in remission, I was told to come off the Pred before complications arise and that I would have to kiss my hearing goodbye - only the right ear was good for the low frequencies, left ear and everything else was gone! I had also been on chemo for a year and so that was not an option anymore, so then I met my wonderful miracle drug, Rituxan in March 2009 and immediately, I was feeling better and was down to 10mg of Prednisone.

Now a year a half later, I had an MRI which showed an inflammation under my left eye - which I have always had cranial nerve numbness which seems to have recently gotten worse and then a positive ANCA showing, I'm going in for my miracle drug next week! I think this flare up was because I just spent 2010 trying to come off the 10mg Prednisone 1mg a month and obviously this started things going - or maybe it was just time for another round of Rituxan. I'm currently back up to 10mg of Prednisone, so let's see if I can come off it this year!

Anyway, I see I've written a book, so I'll finish up, but my life has not only changed because of the Wegener's but also because I am now a hard of hearing person - and who according to Canada Health, does not qualify for the cochlear implant! I've read some of the other intro's and I'd just like to say that we're all in it together with all our different challenges! I hope to hear from some of you with hearing loss, I see one other person from Calgary and anyone else who has any questions or kind words to share.

Have a good day wherever you are in the world!
Gurinder
Calgary, Canada

[Sangye]

Hi Gurinder, welcome to the group! I'm horrified that they kept you on 60mg pred for 2 years. Glad rtx has worked for you. I recommend you get a Wegs specialist involved. Your docs cannot keep using pred to control disease like that--it's far too dangerous.

[drz]

Gurinder:
Welcome to our group. Sorry to hear about your hearing loss and would like to know more about why they say you aren't a candidate for cochlear implant. I hope I can have surgery somtime in next year or so if I get stable enough to handle such surgery. Lack of hearing is a bummer as many of here know. Wegener's disease can require lots of adjustments and acceptance. Hope the Rituxan helps you. Thanks for sharing your story.

[pberggren1]

Welcome to the Forum Gurinder:

We are one big family here trying to help one another.

Are you serious about being on 60mg of Pred for 2 years straight? If so that is aweful. I feel sorry for you. 2 years on high dose pred like that just infuriates me and makes me what to punch out the doc that kept you on it that long.

I am sorry it took them a year to figure out that the chemo was not working and then finally got you on Rituxan. You should have been on Rituxan alot sooner and maybe that might have preserved some hearing in you left ear. This situation also infuriates me.

It also infuriates me that a doc told you to kiss your hearing good bye. ARRRRGGG!

Anyway, my name is Phil Berggren. I live in Swift Current, SK. I was dx in April of 2003 and have had 3 flares. Currently I am fighting 2 bad lung infections. One is called Mycobacterium Abscessus and the other is Invasive Aspergillosis. So far we think that the Wegs is still in remission, but I am having my doubts. I have a Wegs Specialist right in town here. His name is Senyo Tagboto. He is in Internal Medicine and Nephrology. He is by far the best doc I have ever seen and I have seen over 60 in the last 8 years.

Sangye is right about getting a Wegs Specialist on board. But at the same time you have to learn how to do research and become your own best doctor.

Wegs left me deaf in my left ear also and about 50% loss in my right ear. From 2004 to 2010 my hearing did not change much at all. In 2005 my Grandma paid for my hearing aides. Unfortunately one of the IV antibiotics I am on to treat the first lung infection mentioned is taking away more hearing. Right now my hearing aides are almost useless. I have been refered to the Cochlear implant team and have seen an audiologist and sent in everything they requested. I hope to hear back from them soon.

Please feel free to private message me about anything you would like to talk about. We are all here for one another. Wegs is a scary disease and we need all the support and understanding we can get.

I met another Weggie in Calgary by the name of Dorothy Spence. She is a very nice lady. There is also a Kelly on the Forum here as well from Calgary and one of the guys he used to work with got sick almost the same time he did and dx with Wegs. Marta on here also might know of a possible doc to check out.

I hope the Rituxan kicks the Wegs out of the ball park for you.

Take Care,
Phil

[JanW]

Welcome, Gurinder -

I too am horrified that you were kept on high-dose pred for so long. Your doc is probably correct in that ctx or rtx was the way to go for hearing loss, but just to clarify, methotrexate is a chemo drug -- in case our newer members are unclear. It is not generally used for severe cases of WG -- and hearing loss concurrent with a WG flare would certainly qualify as that.

Another small point -- reducing pred shouldn't make anyone flare. If symptoms start to accumulate as pred is reduced it may mean that the main immunosuppressant (ctx, mtx, etc.) isn't at a high enough dosage, or, in your case, that it's time for another infusion. Researchers are pretty united in their belief that the cause of flares remains unknown, which is why there is a lot of controversy about whether or not long term drug maintenance 'stops' flares, or it is merely coincidental.

[Sangye]

Jan, reducing pred too quickly or going below a required dose can cause a flare. At my Sept appt with Dr Seo, I wanted to test my adrenal function (to see if there is any). This would require going off pred for 3 days. Even though I was still in remission and had no signs of a flare, Dr Seo was very worried that doing it could cause the Wegs to come out of remission. We decided not to do the test and continue the slow pred taper instead.

[JanW]

Then I guess I misheard or don't understand the mechanism, because I thought that they said that they couldn't yet prove what would bring on a flare (which I understand is not the same as saying it's not possible that removing pred -- or anything else -- does bring on a flare, just that it's not proven).

[Sangye]

I think they mean in the absence of changing variables like pred dose, they don't have any idea why someone in remission would suddenly flare. It does seem erratic, with some people constantly flaring and others going 20 years without disease activity.

[jola57]

Hmmm, didn't we say we are all different? For me, I can't get below 4mg, I hurt too much and am petrified to flare again, so for now and in for a good few months I will stay on 4 and sneak in a 3 once in a while. Gurinder, my goodness 60mg pred for 2 years? Did you go up and down or was it steady 60mg? I am glad you found us, read previous posts and ask questions, but I think you are on the right road.

[gurinbasra]

Hi,

I guess I should clarify a few things. The first is that I wasn't on the 60mg all the time over the two years. The point I was trying to make was that I was never in remission within the two years of chemo and immuno suppressants - like Methotrexate. Prednisone actually acts as an immuo suppressant as well and it seems for some reason that was the only drug I responded. As I took my chemo infusions, my prednisone was reduced and usually around 30-40mg I got very sick and deaf again and the pain around my ear and head was just unbearable!!!!! So then I was bumped back up 60mg until another infusion was due, and then we tried again, and again, and again, etc! So then, for the comment about why I was told to kiss my hearing goodbye was because I'd been on the Prednisone for too long and I would no longer be put on higher than 30-40 mg and that meant that it would not be effective in my ear anymore, so the hearing would have to go. It was that or face life threatening issues that come with being on the Prednisone for too long something my dr and myself was not even going dare. Can you believe that the whole time I was on the high doseage Prednisone, apart from being moon faced and looking swollen all over my body, my weight was always 5-10 lbs less than my usual weight because I was always sick from the active Wegener's!

So, since my dr said I was a very rare case of not responding to the usual treatment of immunosuppressants, I was wondering how many other Weggies out there had the same issues. I finally responded to Rituxan because for the first time I was able to come down to 10mg of Prednisone without getting sick again, and I'm hoping that my next treatment will at least get it all for once! The Rituxan is a drug that is not approved in all the Provinces of Canada like Alberta so it's not always the first choice for the drs as you're asking your patient to pay $10,000CAD for one treatment - I was lucky that my work insurance - Manulife - covered for it! But when most patients respond to chemo, that's always the first treatment given. According to my dr, I was the first Calgarian with Wegener's to be treated with Rituxan - anyone other Calgarians or Albertans that have been put on Rituxan?

Anyway, thanks for all the comments of support and concern, I have a great dr who's on top of my unique situation, and I think as someone else mentioned, we may all have Wegener's but just like it has affected us all in different parts of our bodies, the same I think goes for how we've all responded to different medication. I believe in being my own health advocate so I don't easily take any drugs until I've personally investigated and read up on them, and I think the key is for us to be in tune with "how we are feeling". My dr always asks me how I'm doing, because sometimes the numbers he has in front of him just don't make sense as to how I'm actually doing.

Also for the question about the cochlear implant, I was assessed in April 2009 and was told that because of the low frequency hearing in my right ear, I didn't qualify. I think since then my hearing has gone down again, so I'm down for another assessment but am waiting to hear from the cochlear implant team. You pretty much have to be a fully deaf person in Canada to get a cochlear implant - this is when I envy my American neighbours!

Talk to you later
Gurinder

[elephant]

All you can do is move forward Gurinder and I am happy that the RTX is working for you. You will learn so much from all of us and I am still learning.