Wegeners (GPA)

[Marcus1988]

I've recently been diagnosed with Wegeners and have had my first course of Rituximab. On daily steroids and generally feeling a lot better. My nose has changed shape (saddle deformity) and it currently is letting off a bit of a horrible smell... (Like rotting) Does/did this happen to anyone else In the early stages and when should I expect the smell to stop as someone else told me the Rituximab takes a while to start working... Cheers

[Hidden]

Hi Marcus1988, first of all I'm glad you are feeling better and then I'm sorry you're in this boat too.

I have GPA which started in my nose, it has changed shape and I still have some problems but lucky for me I don't have the saddle deformity. You must have been undiagnosed for some time for your nose to get to that point? Are you seeing a vasculitis specialist and an ENT doctor regarding your problem?

When I was first diagnosed I had no sense of smell, taste and limited hearing. I had cyclophosphamide then rituximab to accompany my high doses of steroids. Reassuringly, my hearing returned quickly but my nose was stubborn.

During my second biopsy, under general anaesthetic, I had my nose cleaned and some fused scaring opened up which improved things greatly. I also had lots of antibiotics (tablets and creams) to help get rid of infection. I was closely monitored by my vasculitis specialist and ENT doctors.

I met another lady, during my treatment, who had almost identical symptoms to me and she (or rather her husband) complained of the smell in her nose, but I don't think I had this symptom.

Personally, it took months for my nose to improve, the steroids and infusions did make a difference but I was able to get reassurance from the doctors treating me when I noticed a change or the symptoms came back.

Make sure you raise your concerns with your doctors and get answers, I know you have so much going on but you will need to learn about your condition as well.

There is loads of helpful and invaluableadvice on the VUK website and they have a helpline.

Good luck with the treatment, I hope the rituximab does it's job for you soon.

[Llinos in reply to Hidden]

Hi Marcus, I have had WG for 15 yrs now and My nose was deformed too ( my pug nose) My old consultant advised me to make up a solution of 1 teaspoon salt, one teaspoon sugar and one of bicarb and to use cooled boiled water. ( did anyone else try this??) You gently sniff up a spoonful once or twice a day. That worked for me, or you can buy nasal rinses from Boots etc.

Once I had been in remission for a few years I had my nose repaired by a wonderful now retired surgeon.

Hope things settle down soon

Llinos

[Hidden in reply to Llinos]

Oh yes, good point Llinos, I rinse my nose with a Neil med bottle (gets all the nastiness out) and use the sachets of solution (bought from Amazon). I did try home solutions too, which are also effective.

[tisme2]

Hi Marcuss1988 now that you have your diagnosis things will improve for you and I hope you see some results soon.

Like myself I was diagnosed with Wegeners GPA in August and although it took just under 2 years for the Rhumy to get to this diagnosis since then I have been firstly on high dose of steroids and have now just started using Azathioprine because my GPA has damaged my Kidneys. I don't though have any facial issues so i'm happy about that at least! I am told that all the meds whatever one is prescribed take a while to start working so as I say hopefully things will improve for you soon.

[9682maria]

Hi Marcus I've had WG since 2002 I have saddle nose deformity, I've always had that smell but only when I have a sinus I fection? Rituximab will do the trick but takes a wee while to work but it will work I have had ritux along with chyclo, since 2005 ritux is my wonder drug. I've lost my sight in the one eye hearing loss one side and have a hole in the corner of my eye due to the Inflamation in my sinuses . Keep on top of it if you feel it's not right you have irregular Smells or anything tell your rheumatologist. If you leave it too long and it's an infection it can lead to bigger problems as I've had. Back in 2002 I had no one to help me, but now thankfully I have a brilliant specialist here in Edinburgh. Hope it sorts itself out son if not go to your GP get an antibiotic. For years before rituximab I had to get my nose cleaned at least once a month it was horrendous no sooner as crusting went they reappered so bad bad that I couldn't breath. Thankfully ritux has calmed it down allot I have had flare ups at least one every 18 mths or so but I'm now getting ritux on a regular basis. Hope this all helps. My smell smells like rusty nails a tinny smell not that I know what rusty nails smells like but it smells like metal or something like that, even wet dogs sometimes only way I can explain it and I also feel sick with it allot of the time. Take care xxx Colette Fife

[9682maria]

Sorry meant to say also that I too rinse with neilmed sinus rinses I find them good Marcus. 👍