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 :razz: .........and now look at me :w00t:

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 :crying:

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.....

[Alysia]

Hi Allison & husband.
welcome to the forum.
I remember when I came here I was at first "afraid" to write to the "open space" of the internet.... in a forum which embrace the globe... now I feel very safe here... I hope u2 can feel the same soon.
best experts of WG on the globe are here... experts from "inside" who know how it feels like....
I hope your husband will feel better soon.

[Allisonquast]

Still trying to sort out where I need to post so if you have to move this then go right ahead. Right from the hospital he was told that he would be on Cyclo for 6 months. he is being weaned off predisone now. This forum helped alot this weekend when we were away as he was having bad pred withdrawl symptoms. No one mentioned these to us.

This all started in May of this year, he had sore feet, then sore knees, sore back and pain in his right side. All of this came and went. He then developed a bloody cough and difficulty breathing, a bloody nasal discharge. Two courses of antibiotics and no change in the cough etc. He got fed up one day and went golfing with his buddies. He woke up the next morning with very swollen and very sore hands. Off to emergency we went ! After a week and episode of "House" he was diagnosed with Wegeners/GPA.

He apparently has no permanent kidney damage and his lung function tests were normal about 6 weeks ago. He still cannot catch his breath on hills or stairs. So far his only doctor is the Rheumy and his GP.

He is tolerating the meds fairly well, hair falling out and pred face is tough for him to take but I still think he is handsome !

I did not go to the last Rheumy appointment but I will go on the 20th of December with my notepad.

THanks again all !

[pberggren1]

What city are you near Allison? Edmonton or Calgary?

[annekat]

I think it is fine to keep posting in your New Member thread since you are still introducing us to your husband and his situation. When you want to start a new thread, go to Forum, pick a category you want to post under, go there, and click Post New Thread. You'll be all set.

Glad to hear more of the details and his case sounds similar to mine, except it sounds like he was diagnosed a lot sooner, which is a good thing. I went along with sinus and ear issues, and some of the joint pain, for 2.5 years before it went into my lungs and then I was diagnosed. I started on the same drugs and was on CTX for longer than 6 months. It worked well for me, though, and the lung and joint issues were the first to be controlled and stopped in their tracks. The nasal stuff takes longer for most people but there should be a lot less blood in the discharge before long. I was eventually switched from CTX to MTX, a milder but still effective drug, which seems like a likely progression for your husband, though there are other possible drugs which could be used. I'm glad he has no kidney involvement and is tolerating the meds well. I had hair loss, too, but it stopped when I tapered and then quit the CTX. On MTX, I take folic acid to help counteract it, but it just doesn't seem to be as much of a problem as it was early in my treatment. Keep us updated!

[Allisonquast]

Phil it's Edmonton

[Allisonquast]

Thanks Anne. They mentioned imuran next?

[pberggren1]

There is a good Rheumatologist in Edmonton Allison. Her name is Elaine Yacyshyn. She is at the U of A. I highly recommend you get her as your husbands doc ASAP. The most important thing for us Weggies is a top Wegs doc and she is probably one of the best in Alberta, if not the best.

[Allisonquast]

Thanks Phil.

[pberggren1]

You are most welcome Allison. Phone her office and tell her the dire need for you husband and I'm sure they can get you in soon.

[Allisonquast]

Hello everyone, this is the "husband"

I feel like I know most of you as I have added this website to my favorites some time ago and visit quite regular when I am wondering what is going on with my body and the "walking Pharmacy" I have become.

The doctors have told me that they caught the disease very early and there is no sign of any permanent damage. They expected I would be on medication for about 9 months rather than two years they said was the usual course of treatment. From reading some other's stories I felt very blessed (if that's possible with this disease) that this was all I had.

Allison has been my sounding board and diligently researches all the stuff I complain about. She has been able to put my mind to rest as most have been "normal" side effects of one thing or another. She will probably tell you that "pred rage" is alive and well too.

Anyway I know that quite often the medication trail has been asked of newbies so here it is.

Left hospital at 100 mg per day cyclo, and 60 Pred plus the usual stomach stuff, antibiotics, and bone drug, calcium, vitamin B, and whatever else.

Was moved up to 150 of cyclo by Rheumy.

At three months Rheumy thought he might change from Cyclo to Imuran however he changed his mind for another three months. Instead he increased the drop in Pred to 5 mg every three weeks. Currently on 20 mg per day. All of my monthly blood work/urine is "clean"

Personally I can't wait to get off both of these. What drives me nuts the most is the shortness of breath I have and that my eyes constantly feel puffy.

Anyway, thanks to Allison for joining and getting us talking to all of you.

Colin

[pberggren1]

Welcome Colin. I see you have Dr. Jones so are in very good hands......:thumbsup:

[mishb]

Hey Colin, great to see you :biggrin1:

I'm glad you found this forum and that it has helped you in your recovery.

Sounds like things are travelling on the right path for you.

I can't help you with the shortness of breath on the hills and stairs, I'm sorry. It still gets me too, and it's been 4 years now.

Take care

[annekat]

Welcome, Colin, and glad to meet you! Your case does sound so much like mine, including the treatment. It sounds reasonable to me that they kept you on CTX longer than the 3 months. At that point, I feel I still needed it, too, as I was just barely able to function outside my house. I could have been put on Imuran next but my doc chose MTX. I doubt that one choice is any better than the other, though there could be some differences in side effects or tolerability in particular cases.

The shortness of breath is normal for awhile when you have had lung involvement. Later, even if you lungs are doing well, you may have it due to stuff from your sinuses getting down into your bronchial tubes and blocking them until you are able to cough that out of there. I still go through that after 2.5 years, but it is getting better. It may never go away due to the damage to my sinuses. Since your WG was caught early, you will probably do better.

You are of course very lucky to have Allison on your team along with a good doc. It sounds like you are doing great and can look forward to much better days to come! Keep us updated; we are interested!

[Alysia]

Hi Colin.
what I find very helping to my short of breath and coughing is daily walking. every morning, not less then 30 min. it also helps for the fluids in the ears, for breathing through the nose and for the joints. (and also for the figure :wink1:)

[marta]

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.

Hi Allison,

My name is Marta and I'm also in Alberta. I live in Jasper. I'm so sorry to hear that you're on the bandwagon but this is by far the best place I've been on to get info, support, encouragement and courage to stand up for yourself. The biggest hurdle is finding a doctor who has dealt with Wegener's enough to know when to put'em on the table, or when to hold'em and when to fold. I happen to have found the best one in Alberta for sure, possibly even Western Canada. She studied at Cleveland Clinic and Mayo and is one of the heads of the CanVasc team of doctors. She's at the UofA and totally worth seeing. If you or your hubby want to talk you can call us anytime 780-852-5773 and I can talk to your husband from a patient perspective and my husband can share experiences with you from a caregiver's perspective. We are totally here for you and I've got the lay of the land pretty figured out in our province.

Also I quoted your comment above because I totally agree with you on the cancer vs autoimmune disease perspective. That's exactly why I've taken this particular issue up as a cause that propels me in a forward/positive direction. It gives me hope that we can change things for the better, not just for us but for all patients (and their families) with autoimmune disease. I started PJ Day two years ago in Jasper to raise awareness and start the conversation going, and it's been a huge success. Everyone in Jasper knows autoimmune disease, now it's time to take it to every corner of the globe. Here's a link to what went down the last couple of years - Pajama Day Archives | Find The Common Thread (http://findthecommonthread.com/pajama-day-archives/) . Next PJ Day will be February 28, 2014 and just this morning I was talking to Breakfast TV to come up and do their morning show from Jasper, in their PJ's, talking about autoimmune disease - as they did last year.

I hope that your husband turns around quickly and that you can be part of the PJ shinanigans next February, and in the meantime, feel free to call me anytime. I feel like an old pro at this Wegener's game.

All the very best to you and your family.

marta

[marta]

There is a good Rheumatologist in Edmonton Allison. Her name is Elaine Yacyshyn. She is at the U of A. I highly recommend you get her as your husbands doc ASAP. The most important thing for us Weggies is a top Wegs doc and she is probably one of the best in Alberta, if not the best.

That's the one Phil. She's a Vasculitis rockstar. I've been to her office twice now and we're starting to call it Weggie Mondays, as I meet Eryka there, who I originally met on here.... we're now buds.

[marta]

Colin, can you tell I'm replying to posts as I read them?

I am sorry you're on the walking pharmacy gig with the rest of us, but it will all come together, and it sounds like you're on a good tangent right now. As I mentioned earlier, please feel free to call me or I can call you if you like, just give me your phone number and when is good (I have the Canada/US free calling plan.)

I know that the early days are difficult trying to figure out if whatever you're feeling is drug related, disease related or just a cold, since they all behave differently, but you get the hang of it after a bit, and the associated anxiety goes away. As I mentioned to your lovely wife, please feel free to use our experience to help you better deal with yours. I know if it weren't for the people on this forum, I would have lost it completely on numerous occasions, and I can say they probably saved my life when my rheumy at the time (I got him when I was diagnosed at the Royal Alex) completely abandoned me while I was in a full blown flare. I too was diagnosed in May and was weaning and on the right track, then I got a flu shot and that set of a flare, but my rheumy called me (after I left a few messages on his voicemail) giving me heck for calling him "with insignificant cold symptoms" - two days later I was in the hospital on 1000mg of Solumedrol (the equivalent of 1500mg of pred) for three days. He never called me or my GP back when we needed advice on how to proceed. I dumped him and got Dr. Yacyshyn who I love. Our first appointment was almost an hour long and it ended with a hug. She knows her stuff and has started a Vasculitis clinic at the UofA I think it's the first Monday of each month. That way you don't need a referral. Let me know though and I can get a hold of her and talk to her about seeing you in a pinch if you'd like.

All the best and know that there is another side to the yuck you're feeling right now. I promise.

marta

[pberggren1]

Marta, how is Eryka doing? I have not heard from her for a while.

I am also blessed with a top Vasci doc. I didn't think anyone could top Senyo but then I met Bonnie and am blown away even more. I have already met 4 other Weggies at my doc's office and about 10 others in Calgary through my lung doc there.

Colin sees Dr. Jones so he is good care for sure with one of the top docs in the Vasci field.

[Allisonquast]

Hi Marta. We have followed both your blogs since diagnosis and almost called you when we were in jasper this past weekend. We will meet one day I am sure. Colin will respond to you I am sure also! Thanks so much.

[marta]

Awww Allison, I'm bummed that you didn't call me, although I think you'll enjoy visiting more when we're done the bathroom renovation... right now my house is a total disaster area.

I sincerely look forward to meeting you!
Wow, I guess I should write something in my blogs - get my butt in gear. I've gotten caught up with everyday life.

Please please call next time you're in the area and before that if you just wanna chat.

Peace.
m

[pberggren1]

Trust me Allison, you don't want to pass up a visit with Marta and her fabulous cooking. It is to die for........:drool:

[Allisonquast]

Hey it's probably a good sign you don't have time to blog. That was what I though anyways ....." She's probably feeling so much better she's too busy to write ". Take care and I'm sure we will meet one day. We are in jasper often!

[Allisonquast]

Good to know Phil!

[Allisonquast]

Colin here,

Alysia thanks for the advice on the walking....I think that is where I am at.

Hello Marta, as Allison says we have followed your other blogs since diagnosed and I am (or was) an avid skier prior to this. I was looking for anyone wearing a "weggies" shirt in the Whistle Stop when we were there on Sat night.

so......give it to me straight.........will I ever be able to ski the Knob or the trees off Eagle Ridge again?

I know....unfair question.

[Alysia]

Hi Colin. you should see Peter Marshal's page
The Autoimmune Expedition | Documenting a self-propelled expedition from Vancouver to the summit of Mount Rainier to raise awareness of Systemic Autoimmune Rheumatic Diseases (SARDs) (http://theaiexpedition.wordpress.com/)
he will give you hope to ski and beyond.

[annekat]

That is good advice from Alysia, and you should also check out our member, Cindy, if you haven't already, who has climbed Mt. Everest with Wegs, and who will be participating in the Iditarod sled dog race for the second year in a row! She should not be hard to search on here.

[drz]

Colin here,

Hello Marta, as Allison says we have followed your other blogs since diagnosed and I am (or was) an avid skier prior to this. I was looking for anyone wearing a "weggies" shirt in the Whistle Stop when we were there on Sat night.

so......give it to me straight.........will I ever be able to ski the Knob or the trees off Eagle Ridge again?

I know....unfair question.

So when are you going to meet Marta on the ski slopes? She is most likely out skiing after the slopes open.

[carriej22]

Hi Colin & Allison from the East Coast! I'm all the way over in NB.

It's not much fun to have; but sounds like you're getting all fixed up either way. Things definitely get better; just one day at a time :)

[marta]

Colin here,

Alysia thanks for the advice on the walking....I think that is where I am at.

Hello Marta, as Allison says we have followed your other blogs since diagnosed and I am (or was) an avid skier prior to this. I was looking for anyone wearing a "weggies" shirt in the Whistle Stop when we were there on Sat night.

so......give it to me straight.........will I ever be able to ski the Knob or the trees off Eagle Ridge again?

I know....unfair question.

Colin, sorry for the delay in responding. Mom and Dad were up from Edmonton this weekend for Dad's Birthday, which also happens to be my nephew's birthday so him, my sis and I went out and closed the Atha-B down on Saturday night... I spent yesterday licking some wounds.

To answer your question - ABSOLUTELY!!!!! In fact we will go and shred some lines together both places. I personally don't have the stamina I used to, but I can go and polish off a few runs and then go in for some coffee with some extra liquid courage and then I can get a few more runs in. I have a great picture of myself at the top of the Triple Chair (Paradise Chair) at the height of pred cheeks, and I could even ski pretty well then. I actually find - found - that skiing really did a fantastic thing for my soul when everything else seemed to be falling apart. It took me a while (a couple months) to get back on my feet after the initial diagnosis, but once I got it together skiing was fantastic because if you know what you're doing and you're not a nervous skier (which I imagine you're not based on where you like to ski) lifts help up and gravity helps down, and the scenery and freedom in between is beyond any drug any doc can give us.

So I look forward to turning it up together fellow Weggie skier from Alberta. I am really looking forward to it.

Marta

P.S. If you plan on skiing this year, which I sincerely hope you do, you should both buy a Sunshine Marmot Card. It costs the same as a day of skiing but you get three free days out of it and then a discount on the other days. This is the cool new part of the Sunshine Marmot Card - once you go to the ticket window on your first day to initialize it, you can get a plastic direct to lift pass (looks like a season's pass without a photo) and then put your credit card on it on-line once you get home and then you never have to go to the ticket window again. You can just ski on like a season pass holder but only for a fraction of the cost of a season pass or a regular ticket. Insider's tip :thumbup:

[annekat]

I so look forward to hearing about you and Marta getting together for some skiing, and perhaps seeing some pics!

[marta]

Hey it's probably a good sign you don't have time to blog. That was what I though anyways ....." She's probably feeling so much better she's too busy to write ". Take care and I'm sure we will meet one day. We are in jasper often!

Life sure has a way of taking over as soon as you have some extra energy. I also have a problem with just sitting down and doing something for myself. I found the blogging helped me a lot and gave me some great connections. I will get back into it as soon as our new bathroom is done, although I am thinking now of all the things I have coming up and I might be fooling myself. I think I might go to China again this January again and then there's PJ Day and on and on it goes. Only time will tell, but I will make more of an effort to write my thoughts down on the blogs.

Take care and see you, meet you, soon I hope.

marta

[marta]

I so look forward to hearing about you and Marta getting together for some skiing, and perhaps seeing some pics!

I wanted to click 'Like' but seem to have lost that function. So YES, I agree, and will let you in on the Downhill (in a good way) Weggie shenanigans.

[marta]

Hey Colin,

I just stumbled on this - here's the next step when on holidays in Hawaii
- holy moly this just gave me goosebumps. Big Wave Surf Skiing Exists - Travel - Thrillist Nation (http://www.thrillist.com/travel/nation/big-wave-surf-skiing-exists)

Tell me if you don't get goosebumps when you see this video.

[Allisonquast]

Shutting down the AthaB......you go girl.

We will definitely post a picture when we get together on the slopes. I am not foolish enough to think I am going to be able to keep up to a local. That is the difference between skiing monthly and skiing daily. Thanks for the support though Marta.

Allison and I have four children in their 20's. All of them love mountain skiing and being over 50 I figured I had 5-8 more years when I could still take whatever single or double black diamond they took and keep up. Maybe not the same line but at least get to the bottom with them. Anyway, its nice to know I should be able to ski with them again......THANKS. I can't do the green or blue runs all day.....I just can't.

Not sure when we are getting to Jasper again. Have a room booked for Family day weekend so if not before, we will try and touch base then, maybe I will even bring my ski's.

By the way, Hawaii in January and don't think I am bringing my ski's. Snorkel equipment for sure. Getting my cardio workouts shoveling snow... no shortage of that

Colin

[marta]

I am pretty sure I'm Elaine from Seinfeld when I dance but hey, I don't care.... I am out dancing and that's all the matters...It was packed because of that Monster Snowball fight - Yakigoma or something like that, and the shots they were a'flowin - only way I can dance to the music they play at the 'B'.

I think by the sounds of it, we'll be on pretty equal footing at the hill. I know exactly what you mean about the blacks vs the blues and greens all day. I find the snow on black diamonds much better because it hasn't been scraped off by skidders, you can just point them down and let'em go - although I am old school and really like the feeling of the carve so I turn instead of straightlining.

I am so happy that you're going to Hawaii.... I went three times in one year after I got diagnosed and bounced back a little. I feel so alive there, I can't explain it but despite being a pred ball on the outside I found my old self inside when we were there - nothing hurts, and I feel alive in Hawaii. Where are you going? Have you been there before? I am with you on the skiing in Hawaii, but now that fly's in my head (despite not being a swimmer) I'd like to give that a go one time before I depart - it's now on my bucket list.

I hope I meet you before Family Day, but if not I'm really looking forward to that day. You'll be the tanned one and I'll be the pasty white one. ;)

If your kids ski more than once a year, seriously get them the Marmot Sunshine cards - I don't know why everyone isn't using those babies. Brian explained how it works to me and I'm shaking my head why that's not the norm instead of the exception, plus it gets you the option of both mountains.

One last thought - you're in your 50's and think you only had 5-8 more years of skiing.... no way buddy, you're only halfway into your life, the skiing has just begun.

marta