Just diagnosed in Colorado

[LovinLife]

Hi all,
My wife was diagnosed this last week with WG so we are on the search to figure what all this means and how this will affect our lives. She had symptoms starting 2 months ago of extreme fatigue, shortness of breath, headaches, and stabbing pains in her lungs. Docs first treated for pertussis, then pneumonia, and then ran a bunch of blood tests to figure out that she has WG. Fortunately we found a doc that has/is treating people with WG. Started heavy IV pred and cytoxan for 3 days and now on oral pred (60mg) and cytoxan (125mg). So far no side affects that we know of although she just fell yesterday as her ankle gave out and now has to deal with a broken ankle. I can't imagine that being on meds for only a week would be connected to her ankle giving out.
This is so new to us so we have lots of questions, but I was lucky to find this forum. Already reading lots of stories of other's experiences which help a lot.
Wishing all of you the best as you also deal with WG.

[kaysee]

Welcome to the forum. I'm both sorry and glad that you found it. Sorry for the diagnosis, but glad you are in the right place for answers and support.

Karen

[Pete]

Hi LovinLife,

Welcome to the forum. You'll find a lot of support and advice from people who are experiencing GPA/Wegener's. It seems that your wife's docs have her on a standard protocol to get the symptoms under control. At some point in the next 4 - 6 months, they should explore switching her to another maintenance drug such as imuran or methotrexate.

Make sure she stays well hydrated while on cytoxan. Also, tell her not to hold her urine. The metabolites of cytoxan are nasty. A side effect of this drug is bladder cancer. (I was on it at similar dosages for 16 months ending a bit over two years ago. So far, so good with side effects.)

Hope all goes well with her treatment.

[mishb]

Hi LovinLife and welcome to he forum.

I'm glad you are here on behalf of your wife. It is great to have someone advocate for you and also to just be there to support you.

I'm glad your wife received a fairly quick (compared to some) diagnosis and treatment has started.

We would love to see her on here when she is more able.

Until then, I send here healing thoughts and gentle hugs

[NicShaf]

LovinLife,
Welcome. And, it's really great of you to be so proactive on your wife's behalf. My husband did exactly what you are doing when I was first diagnosed, he started posting here and reading everything he could, relaying the informaiton to me. I can't put into words how much it helped me recover emotionally from my diagnosis.

I had a similar start to my meds; 60mg Pred and 150mg Cytoxan. The side effects took about two weeks to kick in for me, mostly from the Pred. So sorry to hear about her ankle on top of everything else.
You've found a great group here. Hope your wife starts feeling better soon.

[LovinLife]

Thank you all for the warm welcome and positive feedback. Each day seems like she is getting a little more energy but I'm sure this will be a long haul. Sounds like there will be good days and some bad days along the way (not sure what to expect here), but hopefully she can get back to a semi-normal life. She really misses her friends but has been too tired and sick to visit with them. Now that we know what she has and how to treat, we are ready for the good times again.

[BookNut]

Welcome to this wonderful forum! I hope your wife will feel well enough to return more fully to social interactions. Getting out again into normal activities goes a long way to making us feel better. I have a different chronic condition, and the thing I miss the most is being able to plan ahead. My friends are very understanding on those days that I can't make an event. But I am always careful to make myself get out to events whenever it is possible...even of I feel too tired. I always makes me feel better.

[Jaha]

GPA/Wegs is a very complicated disease and this forum is so amazing to find answers to your questions. We are a collective group of all stages and ages of the condition. It is very admirable for you to learn and understand for your wives sake, it will definitely take a lot of stress off of her so she can get stronger. Please keep us up to date on her progress. Wishing both of you all the best:rolleyes1:

[annekat]

Welcome to the forum! I do hope your wife will feel well enough soon to get involved here, and then we can hear from both of you. I'm glad to hear she is already noticing an increase in energy. That means the meds are working, and faster than they do for some... it sounds like she is doing really well and will get this under control and go back to what we call the "new normal", which is actually a pretty good state to be in, even if we still get more fatigued than we would like. BTW, I had the same symptoms with lung involvement at diagnosis and was also started on CTX and pred. I had sinus involvement for 2.5 years before that, but it wasn't recognized as anything really serious until the lung involvement set in. It took about a month and a half for me to be able to go out and spend the day doing something with other people. Everyone is different. The fact that your wife's dx came fairly soon after her symptoms started is encouraging that she will reach remission or at least see a great decrease in disease activity in a reasonable length of time without much permanent damage to the affected tissues. There is some scarring in my lungs but they are in good shape functionally, I think. The effects of permanent damage have occurred more in the sinus and ear area. If your wife does not have involvement in that area, and is responding well to treatment now, maybe she can avoid the sinus stuff altogether. Sorry about the ankle, though... that does sound a little odd that it would happen so soon, if it was from the meds. Do keep us posted!

[LovinLife]

Good to know about the hydration. Even though the docs and nurses told her to drink lots of water, hearing it come from someone with WG somehow makes the advice seem more important to heed. You all have lived through this so any advice is welcomed. Another doc recommended taking lots of vitamin D and a multi-vitamin to help prevent some of the CTX side effects. Thanks.

[mmthomm]

I'm way behind on welcoming you to the forum too (been in a hiatus for a while)! Where in Colorado are ya'll located? I'm in the Boulder area...I hope that by now, two months after diagnosis that your wife is feeling better!