Positive nasal biopsy

**gilders** · 10-02-2013, 10:41 PM

Originally Posted by annekat

Gilders, it was convoluted, but on the Gentech website I found this page talking about a way for people to get their RTX for free if they can't get it any other way.

Genentech® Access to Care Foundation

I know it sounds too good to be true and would be a lot of hassle to apply, etc. I think it said there was an income limit of $100,000 a year unless that was for a different program. You might just check it out.

Thanks Anne. We certainly have an income well below $100,000. I've read through the forms, but it asks for Social Security numbers, zip codes, etc. I don't think it's for people who live outside of the US. I will take some print outs of it to my Dr to see if he thinks there may be a way to use it to our benefit.

My sister said she would help with any medical bills, but I think she was thinking of hundreds of pounds, not tens of thousands of pounds.

**gilders** · 10-02-2013, 10:47 PM

Originally Posted by Alysia

Hi Gilders,
I am sorry you got that virus too....what kind of virus is it?

I went to see my GP a few days ago and he just said it was a virus. It's probably not a serious one for an healthy person. Even though I'm not currently taking immuno-suppressants I find that a 24hr bug for an healthy person takes me about month to get over. If my Dr immuno-suppresses me in the next few days, then I'll have no immune system to fight this virus off. It is similar, in a way, to people with AIDS. Nobody has ever died from AIDS, they die from a virus that their immune system can't fight.

**annekat** · 10-03-2013, 03:02 AM

Originally Posted by gilders

Thanks Anne. We certainly have an income well below $100,000. I've read through the forms, but it asks for Social Security numbers, zip codes, etc. I don't think it's for people who live outside of the US. I will take some print outs of it to my Dr to see if he thinks there may be a way to use it to our benefit.

My sister said she would help with any medical bills, but I think she was thinking of hundreds of pounds, not tens of thousands of pounds.

I'm thinking that a lot of times those forms, etc., aren't perfectly designed and can't be filled out by everyone the way they are, as regards to the SS#s, zip codes, etc. I mean, not everyone in the US even has a SS#, I don't think. It's hard to imagine they would make this available only to people in the US. I'd call or email the company and ask them. Maybe there would be just be different info they'd want from someone in England. Maybe your doc can help you sort it out.

**annekat** · 10-03-2013, 03:14 AM

Originally Posted by gilders

I went to see my GP a few days ago and he just said it was a virus. It's probably not a serious one for an healthy person. Even though I'm not currently taking immuno-suppressants I find that a 24hr bug for an healthy person takes me about month to get over. If my Dr immuno-suppresses me in the next few days, then I'll have no immune system to fight this virus off. It is similar, in a way, to people with AIDS. Nobody has ever died from AIDS, they die from a virus that their immune system can't fight.

A lot of us take Bactrim, or another brand name such as Septra, or the generic version of sulfamethoxazole, an antibiotic that protects against a certain dangerous pneumonia that most people can fight off unless they are on immunosuppressants. This is one of the things that I've heard AIDs patients can get and die of. I'm sure you probably already know that. I wonder how many viruses are really severe enough that people can die of them. Maybe a lot, for all I know. I think unusual infections in general might even be more dangerous than viruses, though I don't know much. I just know that people we knew on the forum have died of massive blood infections that took over their bodies and they couldn't fight off. Yes, I think they were on immunosuppressants but I don't know if they were high doses. I think Al was on azathioprine and 9mg. pred. I don't know what Lightwarrior was on. I'm not comparing them to you, they were exposed to different things than you probably are.... Light worked in a hospital, and Al went on a cruise.... I'm just ruminating about this stuff from a pretty uneducated point of view. I certainly understand your concerns given your situation and am hoping for the best outcome to whatever is decided.

**Wegetarian** · 10-03-2013, 11:21 PM

How was your appointment? I really hope you would have some good news.

**gilders** · 10-04-2013, 01:49 AM

Originally Posted by Wegetarian

How was your appointment? I really hope you would have some good news.

Hmmm, neither good nor bad really.

Firstly it was confirmed that the nasal biopsy did show granulomas. He explained that it was a bit of a surprise as it is rare that it shows up so clear on nasal biopsys (lungs and kidneys are much better for clear results). I'm not sure why on the email he sent me he said "likely Wegeners" when the report showed clear granulomas.

As it does not seem to have reached my kidneys yet and has been quite a slow flare, we've decided to start with 40mg/day pred and 200mg Azathioprine. He was considering mycophenolate instead of the Aza, but I explained that research that I have read suggests Aza is more effective. I also reminded him that I've coped with and responded well with aza in the past so couldn't see an advantage of changing to mycophenolate - he agreed.

He has warned me that I'm in a bit of an awkward position as in how to carry on the treatment. The reason being that the steroids should make me "feel" better initially even if they aren't actually doing the job of fighting back this relapse into remission. As there is no reliable blood test to see if I'm improving and he can't totally trust how I feel in myself, I'll have to be especially vigilant on looking out for new symptoms such as the rash, etc.

Some good news and something that I've been stressing about is that he now thinks he will be able to get funding for RTX. This is especially important for me as I can not have cyclophosphamide. Therefore if the pred and aza don't kick butt I'll be on RTX for the first time.

He is also hopeful that the AZA and Pred will not finish my kidneys off. Neither are especially toxic to kidneys, but as with any medication, they can pit extra strain on poor functioning kidneys.

Overall today's appointment as left me in a more positive mood. Realistically he was never going to say "you're not having a relapse", so overall the news was good.

Thanks for everyone who has been concerned. I'll keep updating with my progress.

This relapse has been so different to any of my other relapses which were very quick, aggressive and immediately went for my kidneys. Hopefully this is a sign for all of us that each relapse is less severe than the last, but it could be just an anomaly!

**Alysia** · 10-04-2013, 02:11 AM

Hi Gilders,
I am sorry that you are having a relapse again.
but the other news are good: having the opprtunity to get RTX and the fact that this relapse is not as accute as previously.
and this time you are not alone. you have us with you

I am sending you my praying. you are a "veteran" fighter of WG so I believe that you will soon feel better.

**gilders** · 10-04-2013, 03:32 AM

Thanks Alysia!
I've responded quite well to relapses before (even though my kidneys have been damaged more each time).
The fact that this is a "slow burning" relapse should be a good sign. It is similar to the first onset of WG which led to severe, life threatening problems, but I think that was down to a delayed diagnosis, rather than "slow burning" active WG being harder to treat.

**annekat** · 10-04-2013, 03:59 AM

I'm so glad to hear that even though you are having a relapse, it does not appear to be as threatening to your kidneys and overall health as previous relapses you have had. Also, that the doc thinks you can get funding for RTX.... that is great news! I asked on another thread what your immunosuppressant would be before reading this post.... I see it is AZA and that it is not seen as being too hard on your kidneys.... that is also great news! I'm sure you will keep us posted, and I wish all the best to you!