New Texas Weggie

[drz]

As noted earlier your sad tale is only too familiar to many of us but glad you finally got a diagnosis and hopefully will also get proper treatment from someone who has experience with GPA or at least someone who consults with the experts about your treatment.

Sorry you need to be here but glad you found this forum. Good info is crucial in managing this illness.

[RudiK]

Hello K, I'm sorry "D" had to go through the massive suffering before doctors finally found out what was wrong. His experience, though, is very similar of what everyone on this forum has gone through in one form or another. From my own experience I lived about 40 years without any serious illness and then WG. I'm glad though that "D" is better, and hopefully he will go into remission soon and then lead a better life again. The bad news is that he will never be as good as he was again, that is part of WG's nastiness. Please share with the people on this forum any questions you or "D" may have, there are some smart people on the forum that have gone through what "D" has and will go through and will have many valid suggestions how to cope with the many WG related problems that may pop up.
Good luck and all our best.

[FW WegWife]

Thanks Jane (and everyone else too) for the great advice. I have read over and over about the importance of seeing a WG specialist. That doesn't seem to be an option in Fort Worth or Dallas or even anywhere near Texas. I can't even get a reliable recommendation for a rheumatologist. I'd rather not waste time, energy and money trying out random rheumatologists that may not be any more helpful than the nephrologist who is currently managing D's case. So... I'm open to the idea of scheduling our next 'vacation' in Minnesota instead of Florida if it's really that important. What I'm not clear on is this: How does the coordination of care actually work? Does the Mayo Dr become primary? Do they write all your prescriptions? Do they coordinate care with your local docs? How often do you have to make the trek to Mayo? Who do you call first when you have problems or questions? Also, I'm curious about whether or not your daughter's treatment plan changed significantly after going to Mayo. Thanks again. K.

[Pete]

Hi K,

Here are my thoughts about a wegs specialist in your case...

I'm lucky enough to live within driving distance of Cleveland Clinic (2.5 hours each way). My wegs doc in Cleveland calls all the shots on treating me for wegs. She prescribes my wegs meds and is the final authority in setting out the treatment plan. I see her twice a year now that my health is stable.

My PCP is here in Columbus. His office does my monthly labs as ordered by my wegs doc. He reads them and gives me a copy which I send to Cleveland. He also provides ongoing treatment for some pre-wegs conditions (BPH and hypertension). I also continue to see the pulmonologist who diagnosed my wegs for asthma.

I see a lot of docs, so I rarely go more than a couple of months without being examined. So far, so good, as I've been in a medication-induced remission for over a year.

Hope this info is useful.

[Dirty Don]

How does the coordination of care actually work? Does the Mayo Dr become primary? Do they write all your prescriptions? Do they coordinate care with your local docs? How often do you have to make the trek to Mayo? Who do you call first when you have problems or questions? Also, I'm curious about whether or not your daughter's treatment plan changed significantly after going to Mayo.

Coordination is done by phone/email for the most part...you and/or your PCP need to coordinate that. Mayo is not your primary, but your consultant in this case. Your primary care doc writes most of the prescriptions...you may get one or 2 from Mayo, depends on you letting who take the lead here. In my case, I go to Mayo every 3 months, they are also on call, but in your case, your primary care doc would respond first with notification to Mayo. You always call your primary first...Mayo is good at referring you back to your primary for everything not WG. Mayo's treatment is only changed philosophically...all the same drugs are administered, but Mayo's attitude is aggressive, then be patient while things work. They are thorough, I spent nearly an hour with pulmy last week, just discussing my life framework right now...he was checking me out at the time too, but an hour?! Nice! Then, my rheumy recently retired, so Mayo is pursuing a replacement, but in the meantime I'm with an NP and the head of rheumatology in Phx Mayo...good on me! Yea! So, anyway, had another hour's interview with them both last week also. Mayo takes the time...personnel is salaried, so time becomes less of an issue, time as in profit motive.

[drz]

My primary Weg doctor consulted with an expert at Rochester Mayo and later refer me to their GPA longitudinal study on long term treatment of GPA. He also consulted with other experts elsewhere. Mayo clinic has option of quarterly visits or annual visits in their longitudinal study so I have seen my Mayo expert quarterly at first but may taper down to annual now. He sends reports to my two treating doctors, my local internist who prescribes all meds except for Weg medicine which are prescribed by my Weg treating doctor who is at another clinic. My Mayo consultant would prescribe meds for me if I needed but I prefer to get them from the doctor who first treated me. Generally Mayo doctors prefer to be consultants and let a doctor closer to you fill prescriptions and order routine lab work. They are good at doing a one time consultation too with recommendations and then can see you again if needed. One person on her comes to Mayo from Texas for consultation. If you check the Vasculitiis Foundation list of Weg experts, there are several in Rochester MN.

[FW WegWife]

Update:

Went to the nephrologist yesterday for follow-up 6 weeks post hospital stay. Labs looked great. Doc says kidney function is completely normal. No permanent damage done. What a relief! Only issue was some red cells in the urine. Not sure if that's from disease activity or problems with the Cytoxan. Other than the Pred side effects (weight gain, mood swings), D's doing great. Did I mention the Mood Swings? Holy Crap- The MOOD SWINGS. Please tell me the side effects will start getting better when we get down to 20 mg dosage next week. The plan is to stay at 20 mg for a couple months.
We discussed seeing a specialist. The neph is supportive of this idea. In fact, he worked at Cleveland Clinic for 3 years with Gary Hoffman so the process of getting an appointment at CC has been kicked off. Looks like our next vacay will be in beautiful downtown Cleveland. Anyone familiar with the area have suggestions on how to turn this visit into a mini vacation?

[annekat]

Yes, the pred side effects, including mood swings, do get better at 20mg. and lower, in my experience, anyway.

Your mention of your nephrologist having worked with Dr. Hoffman at CC, and being supportive of your seeing a specialist, is exactly the kind of thing we need to hear about if we get together a database on docs, like Andrew was talking about. Also, knowing about docs who will readily consult with specialists, as has also been mentioned on this thread. I'm glad you are now planning a trip to CC.... sounds like your husband is in very good hands, and I'm so glad that he is already out of the woods with his kidneys and doing better overall.

[Debbie C]

I also see Dr. Hoffman at CC. My boyfriend go up the day before to do different things. They have a zoo there,also the Rock-n-Roll Hall of Fame,The house where the Christman Story was filmed,alot of good concerts. There is actually quite a bit to do in Cleveland. Your also close to Cedar Point ( a big amusement park ) If you belong to AAA get some brouches or call the chamber of commerce.
Good luck with the pred mood swings,it will get better, just have patience and know alot of things he may say or do its cuz of the drugs.