New To Group

[sketoeb]

Hello i am a 28 year old woman with three beautiful

children

. I have been sick with WG four about 3 years. Had 3 sinus surgery before

disguised

and three after. Still very sick was unable to walk four weeks

hospitalized

so many times can't remember. My main problem is the

inflammation

in feet and hands. along with can't breath through my nose and now have to have one more

surgery

to repair damage from

diseases

and other

surgeries

. Lots of blood from my nose ever day swelling in ears, gums, throat, and coughing all the time. Of course i live were there is one

rheumatologist

and he knows little about how to help. any way there is just a

brief

description of what my

life

is like.

[andrew]

Hi there and welcome to the group. Sorry you're going through all that.

Has your Rheumatologist consulted any other specialists? There's a list of specialist consultants here: Medical Consultants | Vasculitis Foundation

Your Rheumy can call one of these consuiltants and discuss your case and treatment.

What drugs are you taking at the moment?

[sketoeb]

Yes I see an ent and rheumatologist once a month at uab. However it does not seem to be helping. heroes my med list
100 mg pred
200mg cytoxan
bactrim
lyrica
nexium
lortab
znax
levaquin
actonel
diabetes med
nasal spray
and i will soon in oct get rituxian
plus my 7th surgery in sinus cant breath and blood on the time

[andrew]

That's a lot of Cytoxan. How has your ANCA level reacted to that? I'm hoping it has gone down a bit

There are a couple of people in this group that take Rituxan/Rituximab and swear by it. I hope that they can log in here soon and give their thoughts.

If the docs don't seem to be getting anywhere then I would strongly suggest you get them to contact one of the specialists listed on the link in my previous post. Sounds to me like something needs a kickstart.

I'm really sorry that you're suffering so badly. I hope that it starts to improve soon! Feel free to log in here any time and let us know what's going on with you, even if you just want to let off steam

I'll be logging in more often after the next couple of weeks once work calms down.