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GC Lim
12-15-2008, 04:39 PM
hi,

I was diagnosed with wg in July 2008...from lesion on my gums and in my nose. Has any come across any members with wg in these areas ?

andrew
12-15-2008, 07:50 PM
Hi there and welcome to the site!

You'll find at least one of the members suffers from these lesions. I'll let her respond to you when she spots your post.

How are you coping and what meds have they got you on?

GC Lim
12-28-2008, 04:20 PM
When I was first disgnosed with WG, I only had gums and nose involvement. They put me on Pred and Methrexate. I was doing well for about 2 months but when Pred was stepped down to about 20mg, I had a flare-up and this time it also involved my middle-ear. My ENT doc diagnosed it as otitis media, said it is an infection and antibiotic was not working because of my high Pred dosage. They dropped by Pred further and that was all hell break loose. WG went to "attack" my whole sinus area and I also ended up with Bell Palsy--loss of control of facial muslce.

Since then, I am back on Pred and they swith my MTX to Azathioprine. Just last week, when my Pred was stepped down to 20mg, I experience a flare-up again. This time, my throat is invloved, lost my voice 2 days ago...will be seeing my rhummy tomorrow.

My rhummy is hesitant to put me on cyclophosimide as he is concerned about the risk of bladder cancer from the drug. He said he will not put me on the drug unless there is lung and kidney involvement. I am quite pissed as it is obvious my WG is very active and that both MTX and AZA had failed. Will see what he has to say when I see him tomorrow.

Does anyone know the % of bladder cancer risk from cyclophosimide ?

andrew
12-28-2008, 04:34 PM
Cyclophosphamide (Cytoxan) can cause bladder cancer due to the potential of residue sitting in the bladder for an extended period of time. I'm not aware of a percentage of those affected by bladder cancer though. I was on Cytoxan for a bit over a year and was drinking heaps of water to kep myself flushed out. I didn't have too much trouble with that anyway as I had kidney involvement AND was on Lasix so I was weeing like a champion anyway.

Cytoxan is a serious drug though and your Rheumy is right to be wary. It may be a case of dropping your Pred down too far too quickly. It's amazing how often that happens. Azathioprine (Imuran) is quite effective in most cases and is a better option than Cytoxan. Your individual circumstances though, will be different from mine however you can get a second opinion somewhere else if you are concerned that you aren't getting the right treatment.

From what I can glean from your post, I would say that you need to be on a higher dose of Pred and when you stabalise, it should be reduced s-l-o-w-l-y to try and prevent a relapse. Additionally, you might just need a larger dose of Azathioprine. What dose are you on currently?

It will be interesting to see what the Rheumy has to say when you see him tomorrow. Please update us with the results!

Sangye
12-29-2008, 02:18 AM
There are 2 separate risks involved with cyclophoshamide. The first is the risk of bladder hemorrhage (hemorrhagic cystitis). This is caused by the drug sitting in the bladder and irritating the tissue. It doesn't take long to make it start bleeding and it's a major problem if this happens. If you drink 2 liters of water (or more if your doc says so) each day, it keeps the bladder flushed out and this won't occur. My doc also told me to pee every time I had the smallest urge, so none of the drug would sit in there.

The second risk is bladder cancer. This is due to the fact that cyclo is chemo (therefore a carcinogen). Whatever tissue a carcinogen spends time in is more prone to mutate into cancer cells. Just drinking water is not going to reduce this risk, however. It helps get it out of the bladder, but the bladder is still holding chemo.

The lifetime risk of bladder cancer in patients with a history of using cyclo is usually about 3 times higher. That's a lot. I'd say if you can avoid the drug and keep your Wegs under control, do so. I did cyclo (was given no other option) for almost a year and I still haven't recovered. It's a rough drug.

Here's a good journal article from 2004 :
Urinary bladder cancer in Wegener's granulomatosis: risks and relation to cyclophosphamide (http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=1754772)
It says the risk goes much higher with higher cyclo doses and longer periods on it. Makes sense, of course.

Twice
12-29-2008, 08:23 PM
I sometimes suspect that ignorance is bliss. I've no idea how much cyclo I've had altgether. I had quite a lot in the early years, but I wasn't really paying that much attention. When I was about 20, I had 'a lot', over months and months, both IV and oral and while taking pred and Imuran at the same time (triple therapy, they caled it). Since then, I've managed OK on a combination of Imuran, MMF and ciclosporin with pred. So, twenty or so years after taking long term Cyclophosphamide, I've never had any lasting bladder problems, other than being particularly prone to UTIs (which may well be related to the transplant rather than the drugs themselves).

In the UK in 2005 (http://info.cancerresearchuk.org/cancerstats/types/bladder/incidence/), the incidence of bladder cancer per 100,000 people was 24.8 for men and 9.7 for women. Even if cylcophosphamide makes us 20 times 'more likely' to get bladder cancer, the chances are still 'unlikely'. My crude mathematics suggests that men who have taken cyclophosphamide have a 0.496% chance (1 in 200) and women a 0.194% chance (1 in 500).

There's probably some scientific hoodoo which means that I'm completely wrong, but I still think that it suits me better to think of the danger as 'a bit less unlikely' than 'more likely'.

Carol
01-13-2009, 08:14 PM
I had lesions inside my nose and the most unbelievable mucus. This has settled down now I am on the drugs..... but it does flare up sometimes. I can recommend nasal sinus rinses with the sachets - don't try to mix your own - it hurts too much. Neil Med is the brand I use - it seems scary at first with so much water going up one nostril and coming out the other but you get used to it. Half way through I actually stop and draw it down the back of the throat because this is where some of the mucus accumulates and it becomes very uncomfortable if I don't try to remove it. Sorry about the yuckky details but it may help you or others who do not know about it.

Twice
01-13-2009, 08:52 PM
"don't try to mix your own - it hurts too much"

I remember at one stage being so desperate once that I followed some advice I picked up from I don't know where, and...with my head upside down...dribbled a bit of gin down my nostril to try to clear...

OMG!!!!1

Never again!

Carol
01-13-2009, 08:57 PM
My rheumy put me on IV cyclophosamide once every 6 weeks. I'm also on Pred 19mgs - dropping by only 1 mg a week (after flare ups both times they tried to drop it by 5mgs) and Imuran 3 times a day. I am slowly improving so it seems i'm on the right path. I'm very shakey and have nerve damage in legs - and tiredness - they are my main problems.

Carol
01-13-2009, 09:09 PM
This is the first really good laugh I've had with this website. I can't even begin to imagine what gin up your nose would feel like!!!!!! One day I forgot to put the sachet into the water and even just the water made me feel like my brains were being blown out. I've had a wonderful day today swimming in the ocean at Lakes Entrance, the water was so warm and the surf just right. It was great exercise and good to be "back" doing some things I love. Swimming in salt water is very cleansing and healing so will a aim to do it more often.
Regards Carol

Twice
01-13-2009, 09:18 PM
Gah. I just Googlemapped that. That's so completely not fair. You get that, and I get to look over the grubby, murky, smelly English Channel in midwinter.

emilywatson
01-22-2010, 10:11 PM
I came across caring.com (http://www.caring.com/) with some relevant articles. Just have a look at it. It might be of some help.