Finally getting off Preds

[Jack]

Hi Rose,
No need to feel isolated with all of us here to support you! Anything you want to say or ask, just get it off your chest whether it is just a moan about how you are feeling or a question about medication.
Tell us how you are doing, what symptoms you have and the medication you are on. Oddly enough, we are all interested to hear.

[Sangye]

Hi Rose,
Having found this group, you no longer have to feel isolated. Here's my history, posted in ther "New Member Introductions" section.

[Rose Cozzette]

thank you, how are you doing? i really am curious about us weggies and what we did before and do now. i used to be a speech pathologist and then a wood carver, which i cnt do now and really miss. the carving that is. how long does it take to not be so tired? rose

[Sangye]

I'm a chiropractor. I haven't been able to work since I was diagnosed in mid-2006. I don't know when I'll get back to it. I absolutely love it and don't consider it "work." Fatigue is one of my top 3 problems, so I can't answer your question about it. From learning about other Weggies, though, fatigue is one of the most common and persistent symptoms. Very hard to deal with it.

[JanW]

And you may notice that some of us, like me, are quite chatty. I work on the computer (writer) so I'm on everyday, and constantly at that.

I was diagnosed about a month ago, tried mtx, liver couldn't tolerate, have surgery to correct a subglottal stenosis scheduled for next week. Also, I have a saddle nose which my freckles somewhat, though not entirely, minimizes. I will get on a new medication after my surgery. No pred yet -- doc thinks my disease (which was likely misdiagnosed in 2005 as asthma is moving quite slowly) and he wants to see if he can take the inflammation down with immunosuppressive therapy (tradeoff -- tons of monitoring, biweekly visits, blood draws and urinalysis because we all know that slowly can turn on a dime with wg).

Sangye, I'm off to read your story...I was trying to look for it ages ago but couldn't find it.

[Rose Cozzette]

well thanks, i do have my cry days and a few good ones now and then. so i will vent here. it is'nt easy to tell one's family as they get all upset. has anyone heard of the cleveland clinic for wegeners? we found it on the web. how long post are you? rose

[Sangye]

Rose, the major centers for treating Wegs in the US are Cleveland Clinic, Johns Hopkins (Baltimore), Boston University, and Mayo Clinic (Rochester or Florida. Arizona does not specialize in Wegs).

Where do you live? It's very important to see a Wegs specialist. We can help you find one if you like.

[Rose Cozzette]

i live in colorado. have you been to any? i guess my greatest fear is relapsing due to not being aware of what is out there and available. my rheumy doc seems to be burned out.

[JanW]

Rose -- I think that we have members on this board who have been to everyone one of those centers, and many others around the world! I'll let them tell you about them themselves. I'm outside of NYC and see specialists up here.

[Sangye]

I started with local docs. My original rheumy said he'd treated about 12 Weggies in 6 yrs. I never asked any details about that-- outcome, etc... and in time it became abundantly clear he had no idea how to treat Wegs. I then went to Mayo Arizona. The care was much better, but the doc still wasn't a Wegs specialist. I moved to Maryland in late 2008 and started at JHU. I just wish I would have done it sooner. I would have avoided a great deal of stress and damage.