Bonjour from Paris

[Sydney Paris]

Hi everyone.
I joined the group a few months ago, and am finally getting around to introducing myself.
I'm 52 years old, male, Canadian origin with a very international, mainly European, life History. I was diagnosed with Wegeners (GPA, which is apparently the correct term) about 2 years ago, here in Paris. Previously, I had always been healthy, with no health issues.
My situation/condition is quite unique, in that the disease has, and is, only affecting my brain. I have had no other organs showing symptoms. Symptoms arose 2 years ago, in the form of headaches and dizziness; not constant but recurring at shorter intervals. After about a week, we went to the ER, and quickly underwent a battery of tests, including MRI, blood gets, Lumbar Puncture, etc. The doctors quickly concluded that there was a problem in my brain, with a very cloudy MRI image. Many more tests followed, and finally, after a brain biopsy, Wegeners was diagnosed. A this point, my memory was not good, I was basically not thinking straight and had to take a leave of absence from work
Since then, I have made good progress, following conventional treatment: Cortico-steroids and Chemo. Initially, I took heavy steroid doses the first few days (up to 1g via IV), and then prednisone, starting at 75mg per day (tablets) plus monthly Endoxan treatments (IV). The prednisone was gradually reduced to 5mg per day over 6 months, and I continued with the Endoxan for 10 months. Fortunately, suffering no major side effects, apart from fatigue. After 10 months, Endoxan was halted, and I switched to weekly injections of Methotrexate (40mg) and continued with 5mg prednisone per day.
I have now been on this regime for a year, and my next review is planned for April, to determine if I need to keep taking the auto immune treatments. I had very little negative reaction to the methotrexate, apart from 2 episodes of serious nausea and dizziness for about 24 hours. However, over just the past few weeks, I have noticed a low level of nausea and dizziness, as well as a "fuzzy-headedness" linked with the Methotrexate injections, and am wondering if this is similar to the Chemo-fog phenomenon I've read about.
I would appreciate any thoughts, insights into your experiences with Methotrexate.
A bientôt

[Dirty Don]

Welcome Sydney, glad you're starting to interact with the group. As you probably know, the info and caring here is invaluable. If nothing else, having peeps in the same boat helps ease the tension WG can bring on. Yes, you are unique...I've read of some brain interactions w/ WG, but you're the first I've read on here who has the direct symptom. Sounds like you are on good treatment (any treatment that works is good!). I have been on pred and mtx for 2 1/2 years now...oral mtx. I had nausea and dizziness at first, but doc had me split the dose into 1/2 twelve hours apart...it worked, stomach has been good since. Don't know if they would do that for injected mtx. Best to you, keep sharing!

[pberggren1]

Welcome...I know another Weggie from Alberta that lives near Paris.

[windchime]

Hi Sydney, Welcome to the forum and as others have said sorry you had to find us. You are unique, but I'm glad you're responding to treatment and that you had excellent docs that even thought of Wegs as a diagnosis. We're here 24/7 or someone is on here. Feel free to vent or share or just ask questions. There is a wealth of information in the "vault." I have no experience with MTX as I'm on CTX and other than a little nausea and canker sores I'm not having any reactions. Some have already responded with info for you so hopefully you will find the answers you want. Keep us posted and join in when the mood strikes you.

[annekat]

Welcome, Sydney! I'm glad you started posting. It took me awhile, too. I can't think of another person on the forum who lives in Paris or any part of France, though there may be some; not everyone in the membership here is active. You might check the Weggie Map link at top of page and see, and add your own "push pin" to the map if you wish. There will be some instructions about that.

Wegs in the brain certainly does sound unusual, and even without that, yes, there is a "chemo fog" or "fuzzy-headedness" that many of us have experienced. I hope that they are able to control the Wegs to where your brain will not be endangered in any way. There is usually some damage in whatever area it chooses to strike, though, and I don't know what the repercussions of brain involvement would be.

Just feel free to post about anything you are going through, wonder about, or have to say about someone else's situation... and if you have a need to rant or blow off any steam, we are available to listen to that, too! As I think Don said somewhere, we have all done it. And it is true that you will feel a lot less alone by interacting with us here. I hope to hear more from you soon!

[mishb]

Hi Sydney and welcome to you, from Australia.

I also think that you may be the first member, on here, from France.

I wonder how many cases of WG the doctors in Paris have seen before, in order for them to give a correct diagnosis for you.
You are very lucky indeed, that they did know of WG and got you and medications moving in the right direction.

I look forward to hearing more from you now - the first post always seems to be the hardest to get started

[vdub]

Yes, brain involvement is very rare -- about 1 in 10,000,000. My GPA took out my pituitary, pituitary stock, and hypothalamus. You can see my story at the links in my sig. I'm sorry you had to find our little group.

[Allisonquast]

Wow it must have been a long painful diagnosis journey for you. Glad they figured it out. Again, no idea that Wegs could hit the brain.

[Alysia]

Hi,
wg in the brain is very rare, and sounds scary. I hope I can ask you about it (and if not, don't be shy and tell me ). I am asking because I am afraid that in time wg will reach my brain too.
is it affecting your cognition ? your ability to concentrate and read/ think etc. ? is it affecting your emotions ? your behaviour ?
I hope you are already in remission. are you ?
anyway, you are most welcome.

[vdub]

I'm with Alysia....

is it affecting your cognition ? your ability to concentrate and read/ think etc. ? is it affecting your emotions ? your behaviour ?
I hope you are already in remission. are you ?

What part is being attacked? Mine was pretty localized to the pituitary area and hasn't moved beyond there. The brain surgery to dig out the granuloamotosis was realativly easy, but living with the aftermath has been increasingly difficult.

I can imagine that other parts of the brain would be even more scary.... and probably more rare, too.... My rheumy dubbed me as #24 for granulomatosis hypophysitis, ie. wegners of the pituitary. I am the 24th person in English medical journals. #23 is a young lady in Denver (also on this forum). I suppose that makes you #25 -- that's a good round number... :-)

Sometimes I use this image as my avatar.....