Hello from Alberta, Canada

[Allisonquast]

My husband was diagnosed with GPA in June of this year. He was diagnosed after only a few months of symptoms. I don't want to post too much detail without his approval (his privacy). He knows I signed up to be able to post here. Like most of you we had never heard of Wegeners until our lives turned on the dime last June !

We both have found this forum to be a great source of information. He is 5 months into treatment, Prednisone and Cyclo plus all the other drugs to assist with the side effects. I will write more later but today I am pressed for time. I didn't want to wait to long to introduce myself.

Thanks to you all for your help so far !

Allison

[Pete]

Welcome to the forum, Allison!

This is the place to ask questions, get advice, or just blow off some steam.

Hooe all goes well with your hubby's treatment.

[Dirty Don]

Welcome Allison and husband, you've come to the right place and we're glad you've decided to participate. Please ask any and all questions, blow off some steam, help some others. Good place to be when in doubt for sure...best to you both.

[annekat]

Welcome, Allison, and to your husband, as well. I know I, too, learned a whole lot from the forum before I introduced myself and started posting. It saves my sanity, I think, and makes me feel a lot less alone and a lot more in control. Whenever you feel like sharing more details, with his approval, we are here to listen, answer questions, and share the good times and bad. I'm glad you are here!

[Allisonquast]

Thanks everyone. I will tell the whole story for sure. I want others to learn from our story as we have learned from all of you. It is such a strange journey. Cancer claims the headlines with so little about autoimmune.

[Debbie C]

Hi Allison and your hubby. Sounds like he is on the right track with treatment, that is what most of us started with. There are several on here from Canada,so they may be able to give you info on drs. and such. Keep us posted when your are ready,we are all here day and night to listen.

[mishb]

Hello Alison and hubby.

I'm glad you have finally gone from being a "guest" to a "member". I also had several months of reading before becoming a member.
I wasn't sure that I would have anything to offer .........and now look at me

I would love to hear more of how your husband found his way to a WG diagnosis........because, well gosh, that's just something that everyone wants to be diagnosed with

Take care and ...........

[windchime]

Welcome to the forum Allison,

I lurked for awhile also, but now enjoy the interaction with others that understand what is going on. So much knowledge here that can be tapped as you need it. Keep us posted on your husbands progress.

[pberggren1]

Hi Allison:

I live in Swift Current, SK. I have had Wegs for over 10 years now. 5 months on cyclophosphamide(CTX) sounds a little scary. Usually one gets off it after 3 months to induce remission. Is your husband having a hard time getting into remission? Maybe he has refractory Wegs. Where do you guys live? I will be in Calgary in 3 weeks on Dec 11, 12 and 13th for my lung dilation.

[annekat]

Hi Allison:

I live in Swift Current, SK. I have had Wegs for over 10 years now. 5 months on cyclophosphamide(CTX) sounds a little scary. Usually one gets off it after 3 months to induce remission. Is your husband having a hard time getting into remission? Maybe he has refractory Wegs. Where do you guys live? I will be in Calgary in 3 weeks on Dec 11, 12 and 13th for my lung dilation.

Just want to say, I'm sure Phil is right that only 3 months on CTX, leading to remission, would be very ideal, but I don't think that is the norm for most of us who have been on CTX. It does a very good job of clearing up the worst of the symptoms, but many of us have been on it for 5 months and more, and remission is a subjective term which may or may not have been applied to our individual cases. It is preferable that when symptoms are brought under control and great improvement is shown, whether or not it is called remission, the person is taken off CTX and in many cases, switched to a less toxic drug such as MTX (methotrexate). This was the case with me, and I'm now doing quite well, but still need to watch out for possible flares. I'm on what might be called a "maintenance dose" of MTX, along with a reduced level of prednisone which I'm trying to taper further. No one has used the word remission with me. Some might consider it a medicated remission, as opposed to one without continuing to use any meds. But I still feel that if I greatly reduce or go off meds, I will have a flare. If your husband is not in remission after only 5 months, I wouldn't consider that so unusual, from having read others' experiences on here. However, on CTX, I WOULD expect to see some pretty significant improvement and that he would have tapered down on the pred quite a bit. I'm not as knowledgeable as Phil and only know what I know from reading this forum, which does have some varying points of view. Everyone's experience is a little different and some cases of WG are more severe than others, plus there may be some circumstances such as stress which may slow a person's recovery to some degree. My two cents worth! And I'm sure the docs have told you he must drink LOTS of water while on CTX, but in case they didn't.....