Mother of 13 year old daughter diagnosed with GPA in August

[Mrs.M]

Hi MamaEndora,

First, I'm sorry to hear that your child has this diagnosis. It's a rough disease, but it's one that can be managed.

My husband, while not a child, lived in denial about the diagnosis for a couple of years. Once it got to see the difference between a flare and no flare, he became less agitated when it came to dealing with the disease.

My singular question is whether or not her WG is under control?

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[vdub]

I've been dx'ed with wegs for nearly 7 years now and I'm not sure what "under control" really means. In fact, just this morning, my pulmonologist asked me if my wegs was in remission. I really don't know, so I have put the question to my rheumy and he hasn't got back to me yet. Does remission mean you feel great and you're getting on with life or does it mean you aren't going downhill any further from where you are?

I hurt most all the time. Is that a normal consequence of the disease even if its under control? Or, does it mean I have active wegs? I really don't know. During the time I've had wegs, I've only felt really well for about a 6 month period a couple years ago. I'm not totally disabled, but I'm certainly not feeling well.

I am really tired of this disease. For 7 years I have thought "just after this next procedure, things will be better", or "just after this next surgery", or "maybe when summer comes", etc, etc. But, it doesn't get better. Very depressing.... I was told this afternoon that I have an unexplained enlarged lymph node between my heart and lung. I didn't even know I had lymph nodes there! :-)

[Mrs.M]

I've been dx'ed with wegs for nearly 7 years now and I'm not sure what "under control" really means. In fact, just this morning, my pulmonologist asked me if my wegs was in remission. I really don't know, so I have put the question to my rheumy and he hasn't got back to me yet. Does remission mean you feel great and you're getting on with life or does it mean you aren't going downhill any further from where you are?

I hurt most all the time. Is that a normal consequence of the disease even if its under control? Or, does it mean I have active wegs? I really don't know. During the time I've had wegs, I've only felt really well for about a 6 month period a couple years ago. I'm not totally disabled, but I'm certainly not feeling well.

I am really tired of this disease. For 7 years I have thought "just after this next procedure, things will be better", or "just after this next surgery", or "maybe when summer comes", etc, etc. But, it doesn't get better. Very depressing.... I was told this afternoon that I have an unexplained enlarged lymph node between my heart and lung. I didn't even know I had lymph nodes there! :-)

Vdub,

What is your B cell count? It should be zero. If it is higher than that, then your disease is active.

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[vdub]

What is your B cell count? It should be zero. If it is higher than that, then your disease is active.

I wish it was that simple, but its more involved than that. I'm hoping my rheumy can explain it to me and then I'll pass it on to everyone, but I don't think its a black and white issue. I suspect there are several components to dx'ing a flare. For that matter, there's probably several components to determining if you are in remission.

[Mrs.M]

There is. However, the most significant factors seem to be b cells and pr3. Best of luck to you.

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[Alysia]

Vdub,

What is your B cell count? It should be zero. If it is higher than that, then your disease is active.

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I agree with vdub. Its not that simple. My wg doc says that one can be flaring even with zero B cell count. Also not all of us are anca positive so PR3 is not allways an indication (although for me it is).

Vdub, I am sorry for the ongoing issues you have to handle. It is tough. I keep you in my prayers. With love ♡

[vdub]

I had time today to do some research on b cells. Its very complex, but as near as I can determine, b cell count has more to do with how effective the treatment is with respect to tamping down your immune system, than it does as a measure for a flare. But, you sure don't want to take my word for it. This seems to be a good article.
RBCS - Clinical: Relative B-Cell Subset Analysis Percentage

I left a note for my PCP today to see if I should have a PR3 test done. I think that might be a better indication of a flare. I don't recall that I've ever been tested for PR3 ANCA, but surely I was. I do recall a test for cANCA early on and as I remember it was not positive. I probably should have left the note for my rheumy, but I decided to go with the PCP first since I already have an apt scheduled for a week from now.
PR3 - Clinical: Proteinase 3 Antibodies, IgG, Serum

[Aneinu]

I heard that from doctors as well. B cells might not be a proof that the disease is active. It is more from the blood tests and the inflammation levels and ANCA.

Was there a thread made for parents?

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