New, Daughter - 13 - just Dx with WG

[Al]

Thank you everyone. You give me great hope for understand more. You knowledge will be a great help. As for Abs, I am not sure she will "join" and post on her own. She may use my acct from time to time. She is really shy, she has tried to hide her disabilities for a long time. She will be reading what you post to me. Some of my questions are actually hers.

I will figure out the signatures. I will also give a much more detailed history of what she has gone through. This has been a long journey so far and as a child she just wants to be normal, what ever that is. She has never been able to play sport/cheerleader/or just run...and it doesn;t look like she will being playing soccer with her big sister this year either (she had a really good year last year and was hopping to be in remission with everything..

I need to start a journal and go back to the start of her illness. Thanks for the idea.

Lynn

Lynn, I would, for many reasons, encourage Abby to write in, both with her own personal narrative and with as many questions as she can come up with. Every journey is indeed different; yet we are all travelling together. The web is a good place to start the researches, but it also helps to talk to others who have been there. While most of us would love to "hide our disabilities", for social, personal, or professional reasons, this forum is one place where judgments based on such little things are definitely out of place. Life throws us curve balls, even at young ages. The trick is to figure some way to hit 'em out of the park. In this, we all coach each other.

I also encourage you, strongly, to make contact with a vasculitis specialist. Cytoxan is a somewhat surprising therapeutic choice, as the preferred "heavy hitter" these days, especially for adolescent females, is rituxan. But many non-specialist docs have limited experience with RTX. This is worth some discussion, I think.

Al

[annekat]

It's entirely possible that Abby will be able to play soccer next year. Also, I don't blame her for being shy about posting, since most of us are so much older. There have been people around 15-18 posting on the forum, though I haven't seen them lately. If she ever does feel like it, we'd love to hear from her!

[annekat]

I also encourage you, strongly, to make contact with a vasculitis specialist. Cytoxan is a somewhat surprising therapeutic choice, as the preferred "heavy hitter" these days, especially for adolescent females, is rituxan. But many non-specialist docs have limited experience with RTX. This is worth some discussion, I think.

Al

Al, isn't it still true that RTX is very, very expensive and not always approved by insurance? Cytoxan worked very well for me, though of course there are the risks with long term use. (I'm now on methotrexate.)

[Al]

Al, isn't it still true that RTX is very, very expensive and not always approved by insurance? Cytoxan worked very well for me, though of course there are the risks with long term use. (I'm now on methotrexate.)

Yes, Anne, RTX is expensive. So is life. Anyway, it, in most countries, is officially approved for use with Wegeners and associated vasculidites. So insurance is obiged to cover it if the doctor orders it.

Al

[LynnZielinski]

The plan is to more her to rituxan after the 6 months of cytoxan. the inflammation is severe in her kidneys atm. Once they have it under control they will step down to it.

[annekat]

Yes, Anne, RTX is expensive. So is life. Anyway, it, in most countries, is officially approved for use with Wegeners and associated vasculidites. So insurance is obiged to cover it if the doctor orders it.

Al

I am now on Medicare and don't know what to expect if a doctor were to order it sometime in the future. Do you think they would cover it? Has anyone else on Medicare gotten it covered easily?

[vdub]

Apologies in advance. I really hate it when someone chimes in and basically says "well I've never had this done, I have no experience with it, and I have no first-hand knowledge about it, but I do have an opinion". Unfortunately, that's exactly what I'm about to do..... <sigh>

I am on TriCare which is the very close cousin to MediCare. I have not had RTX, but I have had some outlandishly expensive procedures and TriCare hasn't even blinked. Authorization routinely comes through in 24 hrs. MY gut belief is that they would cover it.

[annekat]

Apologies in advance. I really hate it when someone chimes in and basically says "well I've never had this done, I have no experience with it, and I have no first-hand knowledge about it, but I do have an opinion". Unfortunately, that's exactly what I'm about to do..... <sigh>

I am on TriCare which is the very close cousin to MediCare. I have not had RTX, but I have had some outlandishly expensive procedures and TriCare hasn't even blinked. Authorization routinely comes through in 24 hrs. MY gut belief is that they would cover it.

Thanks, Vdub, and no apology needed. I hope you are right, but I'm thinking there'd be some sort of copay involved, and any typical percentage of copay on $40,000 isn't affordable by me or a lot of other people. Or has the cost of RTX gone down from what I remember reading on here? Of course being on Medicare, I need to pick a drug plan and pay for it separately, which I haven't done yet. I'm thinking to get very expensive drugs covered at all I'd need to pick one of the more expensive drug plans. In reality, I'm looking for one of the cheaper ones with no deductible, given my financial situation. All of this is why I was questioning Al's implication that nowadays, Rituxan, not Cytoxan, would be the automatic drug of choice for hitting severe cases of Wegs hard in the beginning stages. In my beginning stages, I was on Washington's Basic Health plan for low income, and my doc automatically put me on CTX, with the implication that the more expensive drugs wouldn't be covered, and that he'd run into the problem with people on Medicare. Of course, I think that was right before RTX was fully approved by the FDA or whatever. In any case, the copay with Basic Health would have been 50%, assuming there was no generic available and there was another alternative, CTX. Or IS there a generic RTX, or will there be? These are all rhetorical questions at this point, as I don't see myself needing RTX or more CTX anytime soon, if ever.

[Dryhill]

Also a good thing to do is have a list of your meds: when you started a drug/treatment; how much/often; when and why treatment was discontinued. It's much easier to whip out this piece of paper than to have to try to remember everything when you see a new doctor (or even the same doctor!). By giving a typed copy to your doctor it becomes a part of your medical file. Doctors and nurses have told me how much they appreciated the list.This is your own personal journey and I hope we can help smooth out the rough spots. Much love and hugs to you both.

Every time I see my doctor he asks what meds I am on, it is there in the file and on the computer screen, but he knows I can supply the information more quickly than looking it up. Also remember to tell your dentist abouit Abby's meds, especilaly Pred.

Jim

[vdub]

Also remember to tell your dentist abouit Abby's meds, especilaly Pred.

Good tip! I'd never considered that.