Update On My Husband- It's Good

[FW WegWife]

To quickly recap- My husband was diagnosed with Wegener’s in late June. He was hospitalized for 5 days with full-blown kidney, lung, and sinus involvement. He has responded spectacularly well to treatment. Yesterday he had his first post-hospital follow-up with the pulmonologist. Doc pronounced his lungs to be “the picture of normal” with no evidence of damage from the Wegener’s attack. We’ve had several follow-ups with the nephrologist who has pronounced the kidneys totally normal as well. I’m not really an emoticon kind of girl but picture several bouncing smiley faces here.
I’m acutely aware that the risk for relapse is always going to be hanging over us. The last thing I want to do is temp fate by being over-confident. We are continuing to follow all the great advice I have picked up on this board. Next month, we will be adding 2 more docs to the team. The first is a rheumatologist touted by another poster here who I have kind of been stalking on this board since they’re in roughly the same part of DFW as we are. The second is a vasculitis specialist at Cleveland Clinic, Dr Gary Hoffman, who I hope will guide us into a long and healthy remission.
I have mixed feelings about sharing our great news since I follow this board regularly and know that many Wegener’s patients have not been so fortunate. My intent is to put some positive news out there to give hope to the newly-diagnosed. I certainly didn’t find much good news on the internet when we first got the diagnosis and I was frantically searching for information about this disease. I suspect that there must be many other Wegener’s patients with pretty positive outcomes. They are probably just spending more time going about living their lives than posting on message boards. Obviously, no two cases are going to follow the same path. I wish everyone the best of luck and send healing thoughts your way. Thanks for your support and advice.

[drz]

Great news and thanks for sharing. Everyone needs good news that is encouraging and you provided that for the newbie reading this forum for first time today. Your case is also probably more typical of most Weg cases than those with less favorable outcomes and experiences. I would hope your experience becomes the routine for most people as doctors become more experienced and aware of GPA and know how to treat it more successfully. Unfortunately we still have a ways to go to reach that point.

[Michael Bell]

Hi Wegwife, never worry about posting good news. It always cheers us up when someone is doing well.:hug3:.
Mike

[mishb]

Yay, that's excellent news

Here are some of those bouncing around smilies for you both

:hug3::biggrin1::thumbsup::lol::hug3::hug2::hug1:: hug3:

[whatthewhat]

Hooray!! And may I ask - was he given Rituximab / Rituxan?

[pwc51]

Good news is important for all of us, otherwise it is all gloom and doom! The positives will really help, particularly those new to the condition who would otherwise only see the downside. Sadly, as you note, it is not the case for everyone but I believe there are more 'happy' stories than this site would lead you to expect!

[gilders]

We all want to hear the positives. I think you might be right in thinking when people feel better they probably are out enjoying themselves more, so don't get round to posting good news.
I have only recently found this forum and it coincides with a drop in my health. When things are stable (they never exactly get good) I tend to forget about my WG.

[rebekah]

That is wonderful news! Thanks for sharing. It's always nice to read about others doing well. :)

[FW WegWife]

No. They started him on 150mg Cytoxan and 60 mg Prednisone plus Bactrim. The Pred has been reduced to 20 mg but the Cytoxan hasn't changed yet. We'll see what Dr Hoffman has to say next month.

[annekat]

No. They started him on 150mg Cytoxan and 60 mg Prednisone plus Bactrim. The Pred has been reduced to 20 mg but the Cytoxan hasn't changed yet. We'll see what Dr Hoffman has to say next month. That is the same regimen of meds I was on at the beginning, but with a lower dose of CTX as I'm probably a smaller person. I, too, found that it cleared up my lungs very well indeed within a few months. The sinus stuff took a lot longer and still persists to a much more moderate degree, which I chalk up to the damage done to the anatomy, which will always mean extra mucus production. I'm thankful I haven't had kidney involvement but am impressed that your husband has done so well there, too, and in general! Thanks for sharing the good news.

[gilders]

No. They started him on 150mg Cytoxan and 60 mg Prednisone plus Bactrim. The Pred has been reduced to 20 mg but the Cytoxan hasn't changed yet. We'll see what Dr Hoffman has to say next month.

It's great that he's responded so well. I start off with 1g (1000mg) Pred when I relapse, but if 60mg is working, then it's great news and hopefully he'll be able to be weaned off them a little quicker. None of the treatment is good for your health, but at least it saves your life.

Without worrying you, he needs to keep up to date with follow up check ups, not just for the next couple of years, but for life. My kidneys recovered well from total failure. But over the last 19 years have deteriorated severely due to relapses. Fortunately they have stabilised over the last 3 years. My nephrologist says it's amazing that they've not completely failed yet. Once they get as bad as mine they will definitely fail, but at least they're putting up a good fight!

[Debbie C]

That's great to hear he is doing so well. Please feel free to share any story good or bad. We are all one big family here.That was the same regiment I was put on in the beginning also but I think I was on 100 mg. pred then. When are you seeing Dr. Hoffman ? I have an appt. with him on Oct. 8th. It would me great to meet "ya'll " since I used to live in Texas also. I worked for Pan Am at DFW.

[FW WegWife]

That's great to hear he is doing so well. Please feel free to share any story good or bad. We are all one big family here.That was the same regiment I was put on in the beginning also but I think I was on 100 mg. pred then. When are you seeing Dr. Hoffman ? I have an appt. with him on Oct. 8th. It would me great to meet "ya'll " since I used to live in Texas also. I worked for Pan Am at DFW.

Hi Debra- Our appt. is on Oct 15th so unfortunately we'll miss you by a week. It would have been fun to meet up and trade notes. We're going up to Cleveland on Sat the 12th to try to make a mini vacation out of it. Spending the first 2 nights in the Port Clinton/Put In Bay area on Lake Erie and the 2nd 2 nights in town near the clinic. I've never been to the Great Lakes part of the country so I'm looking forward to it. Not sure what we'll find to do but we're pretty easily entertained so it should be fun.
In your experience, how long does the appt. usually last? What can we expect this 1st apt to be like?

[Debbie C]

That's too bad..we could have done lunch. It usually takes a fews hours. A student will come talk to you then he( Dr. Hoffman )will visit with you for awhile. But Debbie went up there and the Dr. she saw had her stay and do tests and come back on Mon to see an ent. I still haven't heard from her,hopefully everything went well. Hope you have a good time on your mini-vacation !!

[pberggren1]

Debbie who?

[Debbie C]

debhaz22 from S.C., saw Villa-Forte, she's home now but they did tests on her while she was there.She had too stay up there over the weekend and see an ent on Mon. I'm sure she'll chime in and tell ya the story.

[Pete]

Hi Debra- Our appt. is on Oct 15th so unfortunately we'll miss you by a week. It would have been fun to meet up and trade notes. We're going up to Cleveland on Sat the 12th to try to make a mini vacation out of it. Spending the first 2 nights in the Port Clinton/Put In Bay area on Lake Erie and the 2nd 2 nights in town near the clinic. I've never been to the Great Lakes part of the country so I'm looking forward to it. Not sure what we'll find to do but we're pretty easily entertained so it should be fun.
In your experience, how long does the appt. usually last? What can we expect this 1st apt to be like?

Hi WegWife,

Here are a few things to do in the Cleveland area. The Rock and Roll Hall of Fame and Great Lakes Science Center are along the lake front at the foot of E 9 St. Museum of Art is at University Circle not far from the Clinic. Great Lakes Brewery and Brewpub are across from the landmark West Side Market on W 25 St. Cleveland Zoo is also on W 25 St just south of I-71. The National Inventors Hall of Fame is in Akron (30 minutes or so from Cleveland. The Pro Football Hall of Fame is in Canton just off I-77 (about an hour from Downtown Cleveland).

[Pete]

Hi again. I see Dr Villa Forte at Cleveland Clinic. My first encounter with her last year was awesome. She spent fully 90 minutes with me discussing case history and examining me. After that, I went downstairs to have blood and urine samples taken. I was there for about 2.5 hours. Subsequent visits have been about 45 minutes. Sometimes, one of the residents sees me, other times not.

Make sure you ask for access to MyCharts. It will give you access to your test results, allow you to renew Rx, schedule appointments, and (if doc is ok with it) allow you to email your doc.

[drz]

Hi again. I see Dr Villa Forte at Cleveland Clinic. My first encounter with her last year was awesome. She spent fully 90 minutes with me discussing case history and examining me. After that, I went downstairs to have blood and urine samples taken. I was there for about 2.5 hours. Subsequent visits have been about 45 minutes. Sometimes, one of the residents sees me, other times not.

Make sure you ask for access to MyCharts. It will give you access to your test results, allow you to renew Rx, schedule appointments, and (if doc is ok with it) allow you to email your doc.

I used the electronic charts where available and like them. If you ask them to send copy of your visit to your local doctor, you can view those too on line. My reports contain all my lab work too. Only one clinic I use doesn't have the electronic access to my records.