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whatthewhat
11-24-2015, 04:21 PM
Lab results started to come back today from Friday's draw, and we have decided to schedule a Rtx infusion for our daughter. This time last year she had just been released from the hospital after a flare almost took her kidneys. Treatment of pediatric WG is different in some ways, and one is the consideration of over-use; what if Rtx loses its efficacy, or what if unknown (or known) side effects wreck a person after 50 years of infusions? But PR3 is ticking upwards over the last couple months, and we want to forestall another actual flare. We are all comfortable with the decision to do the infusion (in fact she herself is relieved to have it, since pain and fatigue has been increasing), but as parents we're sad she has to face this. Mixed feelings, I guess.

mishb
11-24-2015, 09:11 PM
You have to do what is best for her, of course.
I think it sounds like it is time for another as well, just so she doesn't have to go through a flare again.
Some members have it 6 monthly or yearly as a maintenance, without even showing signs of a flare, maybe this is an option for her.
Please don't have a sad face, it's a good thing (but undoubtedly a hard thing) that you are doing, but it is best, I believe.
Big bug hugs to you all :hug1:

Pete
11-25-2015, 12:15 AM
Ditto what Michelle said...

Alysia
11-25-2015, 03:17 AM
Dear WTW,
I remember dr. Phil saying that he knows weggies who get rtx more then 6-7 years. actually since it was still in trial. and they are fine.
my opinion is that it is better to keep flares away. this way, the remission can be "stronger" if I can say so. the faster you catch the beast, the faster you beat it to be quiet again and for more time. maybe I am wrong. but this is how I see it. so I think that you have made the right decision.
I hope for A. that she will get into long remission which eventually be without meds. I always tell that I think that my first wg flare was when I was 17 yo, without being dx. and then I was in remission without meds more then 20 years.
now that she has a furious auntie, and an angelic uncle, the beast will not dare to touch her... !
sending many prayers and hugs. please update us.

annekat
11-25-2015, 03:46 AM
wtw, this is unfamiliar territory to me, never having had rtx, nor been a pediatric WG patient or the parent of one... but it sounds like you are doing the best thing, by avoiding an impending flare, as all of the above say. Flares can set us back, make us take more pred, cause more damage, and prevent us from getting back to normal life. I hope with all my heart that this goes smoothly for her, causes none of you any stress, and that the results are favorable beyond a doubt. We are all waiting to hear.

Birdie
11-25-2015, 04:02 AM
Mixed feelings, I guess.

Educated decisions are the best anyone can do.

pwc51
11-25-2015, 05:59 AM
I have been pressing for RTX for maintenance but recently learnt that in the UK they do a test prior to RTX infusion and if one of the readings, I can't remember which, is out of range RTX is not permitted to be administered, and never will be again as that reading will never recover!!! As RTX is currently the last resort for me, until another wonder drug is found, I am thinking again.

whatthewhat
11-25-2015, 06:20 AM
Dear WTW, I always tell that I think that my first wg flare was when I was 17 yo, without being dx. and then I was in remission without meds more then 20 years.
Dear furious auntie (and angelic uncle)
I remember you describing how you think the beast first reared its head when you were a teen, and then it slept for so many years. I have carried that story close to my heart; it helps me envision what I want for my girl. <3

whatthewhat
11-25-2015, 06:28 AM
Thanks all. I am sure the infusion will be fine - all except the first one have gone smooth as silk (and boring as polyester.)

We as "Team A" do consider very carefully the idea of maintenance Rtx, the every six-months protocol. But just math-wise if I think about who I know that's done Rtx the longest, its an adult male weggie with 21 doses - and he reports that although it hits him faster it seems to wear off quicker too. If that played out the same for our girl it would get her to her mid-twenties...of course our goal for her health care is to get her... um, past that. If she were 60, and I were still butting in, I would without hesitation urge her to do the maintenance protocol. :thumbsup:

Alysia
11-26-2015, 03:59 AM
Thanks all. I am sure the infusion will be fine - all except the first one have gone smooth as silk (and boring as polyester.)

We as "Team A" do consider very carefully the idea of maintenance Rtx, the every six-months protocol. But just math-wise if I think about who I know that's done Rtx the longest, its an adult male weggie with 21 doses - and he reports that although it hits him faster it seems to wear off quicker too. If that played out the same for our girl it would get her to her mid-twenties...of course our goal for her health care is to get her... um, past that. If she were 60, and I were still butting in, I would without hesitation urge her to do the maintenance protocol. :thumbsup:

Every one is different. I am on rtx for maintenance and did already 5 rounds. Each time I feel that I need it less when the 6 months are ending.

Alysia
12-18-2015, 11:39 PM
Hi wtw and others.
I saw my wg dr. Yesterday so I asked him if its better to do rtx every 6 months or to wait for symptoms and then to go for it. He said def every 6 months. Not to wait for symptoms. He said that every wg activity, also smoldering, can cause damages. Also that the best is to control wg to the maximum possible and to silence it tightly. He said that if we keep the wg quiet for long time, it is possible that the system eventually will "reset" itself and will "forget" to attack itself, means healing. As for damage from long term use of rtx, he said that he has a patient on rtx already 15 years for RA with only good results.
I hope this can help. Keeping your sweet miss A in my daily prayers.