Positive nasal biopsy

[gilders]

Hello everyone. For those that have read my posts, you've probably read my current situation. I have had a positive ANCA for the last 11 months. I've also being suffering with symptoms that would suggest a relapse. Most of you have given me the impression that I should be back on treatment. I had my reasons for holding off on the treatment, mostly due to renal issues, but in this case I think you were right.
The exact words from the email my specialist sent were "The biopsy has come back showing likely Wegeners!"
I guess "showing likely Wegeners!" isn't definitely Wegener's, but with my symptoms and positive ANCA, putting off treatment any longer would be risking it too much!
I'm due to see him next Thurs morning. I'll keep you all updated.
We are all different, but when I have a relapse my kidneys have received further damage each time. My Dr has told me that 1 more relapse would be the end for my kidney's. I can cope with WG and it's treatment, but going back on dialysis until I receive a transplant is something I'm going to find very hard to deal with.

I've not resigned myself to losing my kidney and will fight all I can, but I'm also facing up to facts!

[annekat]

I'm very sorry to hear this, gilders. Do keep fighting, along with maintaining your realistic attitude! I'm hoping the treatment will not be as damaging as you might think..... or that your disease activity is not as high as to warrant the most damaging treatments..... I can only hope. And we will all be thinking of you, no doubt, and waiting to hear more. I wish the best possible outcome for you.

[Wegetarian]

Truly sorry to hear. Luckily I know your a tough mofo. I understand it must be a very stressful time for you, and I'll keep my thumbs up for your on Thursday. Keep us updated Gliders.

[gilders]

Thank you both. Hopefully I'll still be able to go on my 5 day Scotland vacation that I'm due to go on the Sunday after my appointment.

[Titus3:2]

We are rooting for you,and hope that biopsy is not positive after all.

[Alysia]

Hi Gilders,
I am so sorry that you are going through another hard time
but you are wg-veteran and you do know how to fight it

my c-anca was positive for years. (while "smoldering") so it should be alarming to treat but not too scary.
Is there any immediate risk to your kidneys now ?
RTX helped me like a miracle. asked your doc about it.
I am sending you my praying and wishes to feel better soon.
please update us.

[gilders]

Hi Gilders,

Is there any immediate risk to your kidneys now ?
RTX helped me like a miracle. asked your doc about it.
.

Hi Alysia.
I will probably have more answers on Thursday when I see my Dr, but going on every other relapse I've had, then I predict that my kidneys will not survive another flare. Having said that, this relapse has been different to my usual relapses. Usually at the onset of a relapse my health (and kidneys) deteriorate rapidly. This time it has been a slow build up over months, with a more rapid progression over the last few 5-6 weeks. It has also not effected my kidneys as yet, so perhaps there is still hope for my kidneys if I respond quickly enough to treatment.

As for RTX I've already spoke to my Dr about it, but he doesn't think he can get funding for it. I know other area in the UK have access to it, but I don't know if I'll be able to get treatment in another area? My sister did say she would help out with any medical expenses, but I think she was probably expecting £100's rather than £10,000's.

[gilders]

We are rooting for you,and hope that biopsy is not positive after all.

Thanks Titus3:2.

[Alysia]

Hi Gilders,
if getting rtx is only a matter of money, then check this link
Insurance and Co-pay Coverage - RITUXAN® (rituximab)
I got it from me2 when I was afraid that the health service will not pay for it. it is in the post of me2 in page 2 of this thread
http://www.wegeners-granulomatosis.c...aucracy-2.html
I know that in Isarel there are also some research programs who give RTX for free, but for diseases other then WG.
In Isarel, according to the "national health law" RTX is included in the "health basket" for wg (they prob though there are not many weggies in Israel that will use it).
maybe there is some law about it in UK ? or some research program ?

[mishb]

Aww Gilders, I'm sorry WG may have taken hold again

I'm struggling though, to understand why you wouldn't want to start on some treatment straight away, if, everytime you relapse, your kidneys get worse.
Wouldn't it be better to start the meds so that your kidneys have, at least, a fighting chance ??