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whatthewhat
10-10-2014, 08:23 AM
I love our rheumatologist and his team, no question. But our daughter has significantly increased joint pain, traveling joint swelling now, increased chunks out of nose, granulomous activity (confirmed with biopsies) on elbows, random sores on legs and face, increased lethargy, very high PR3 and high ANCA, blood (moderate) in urine for first time, and ESR + WBC + HBC all still within normal but heading in the wrong directions. And...next rheumy appt and labs set for January. :bored: To worried parents that seems like forever. Calls and email got us the basic reply that "we see no reason to be concerned." Again, as a worried parent, concern is like a hobby. Time for a second opinion? She's 16 now, and we are trying to avoid kidney involvement (duh.)

Pete
10-10-2014, 11:01 AM
It seems to me that your daughter might be flaring. You might need to be more descriptive of symptoms and more insistent that the doc sees her ASAP. How frequent are her labs? I do a monthly battery of CBC, comprehensive metabolic panel, sed rate, C-reactive protein, and urinalysis.

mrtmeo
10-10-2014, 12:01 PM
Get in touch with a Nephrologist familiar with Weg's.
The kidneys could be involved.
You can contact the Vasculitis Foundation for a Nephrologist near you that knows about vasculitis.
Contact Us (http://www.vasculitisfoundation.org/about/contact/)

daystarr8
10-10-2014, 04:19 PM
Definitely be more aggressive with either finding another doctor or making your doctor see you sooner. January is too long. When my kidneys we bleeding I saw my drs once a week. ENT Hematologist and Peds doc every week for years. My mom was so persistent and found the right docs that wanted to help me and her.

annekat
10-11-2014, 09:34 AM
I agree, insist on seeing a doc. Does this rheumy have much WG experience? Just the blood in the urine alone, and all the other things you mentioned, would get me an appt. within a few days to see my doc, and he is not a WG specialist by any means. Is she currently tapering pred? That could account for some of it, in which case, an adjustment to the taper is probably in order. If that isn't it, then yes, it sounds like a flare, and I can't understand the doc's attitude.

drz
10-11-2014, 11:40 AM
I love our rheumatologist and his team, no question. But our daughter has significantly increased joint pain, traveling joint swelling now, increased chunks out of nose, granulomous activity (confirmed with biopsies) on elbows, random sores on legs and face, increased lethargy, very high PR3 and high ANCA, blood (moderate) in urine for first time, and ESR + WBC + HBC all still within normal but heading in the wrong directions. And...next rheumy appt and labs set for January. :bored: To worried parents that seems like forever. Calls and email got us the basic reply that "we see no reason to be concerned." Again, as a worried parent, concern is like a hobby. Time for a second opinion? She's 16 now, and we are trying to avoid kidney involvement (duh.)

With those symptoms I believe I would be starting RTX treatment for a serious flare within a couple days at most. That is my treatment plan and those are the symptoms I have been alerted to watch for and to contact my treatment team ASAP if they occur. I would have labs the next day to assess progression and confirm urgency. And then expect they would order the RTX infusions to begin. But then i have lost half my kidney function and can't afford anymore. Our departed Wise Elder, Jack lost his kidneys in a few days and often warned everyone to be vigilant about this possibility.

Velma
10-11-2014, 11:03 PM
I agree with everything everyone is saying. The increased joint pain can be a side effect of the changing weather but added to the other issues it is not to be ignored. They may need to either start or increase the prednisone for the joint issues.. Seek a second opinion.. this is one thing you don't mess around with and sometimes doctors are not looking at it from your point of view. Get in their face, yell, cry, and scream till someone listens to you. This is one fight that never ends. Prayers are with you and your daughter.. good luck.

whatthewhat
10-15-2014, 03:29 AM
Thanks, everyone, for your replies. Yes, her rheumy has a lot of ped Wegener's experience. For whatever reason, we are at a standstill with him, but luckily we have a team of other docs and we will go for labs with the pediatrician. Thanks again; it was helpful to be reassured Iam not necessarily over-reacting.

me2
10-15-2014, 11:03 AM
I'm kind of late to the party but I want to agree with the others here. I found over a long period of time that part of the problem of me getting good and timely care was that I was not being assertive enough. I don't like to be and I like to think that people take me seriously without being assertive- well, they don't. Not always anyway.

Another thing that has helped is having a longer relationship with my doctor and his staff. They know me well enough now that when I call and say I need to be seen they KNOW it is serious. But this kind of recognition only came after I learned to be more assertive and get seen as soon as I knew I was heading toward serious problems.

A good WG doc knows it is important to respond to symptoms as quickly as possible before they rage out of control. This can only happen if they are willing to see you right away.

If I ever thought I was having a flare and wanted to be seen and I got the answer it would be over a week later. I would go somewhere else and be seen. I would tell them that I can't wait that long. It is better to be seen right away by a mediocre doctor than wait three weeks to see a top dog. It might be getting too late by then.