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Ok well let me know what ur dr decides to do hope it goes well tho and it doesn't effect u badly

Hey sorry it doesn't start with Z lol its aclasta and I get it through IV once a yr atm coz I can't have any of the tablets or the injections that u can get 6 monthly hope this helps

Jayne
Yeah that's it that's what the dr called it I couldn't remember lol but my eyes changed to to that because my eyes have always been perfect before I got WG just thought it was a little werid...

Hey I get an infusion for my osteoporosis but they only have clinic data for like 20yrs so theyre not sure what it will do to me later on in life as im 24 atm and have had it for the last 3 yrs and I...

My eye does that to!!! I have the erosion under my eyes to more under the right than the left and it hurts and I get double vision too but only when im trying to look to the side without moving my...

I saw my ent today and he said my WG attacked my sinuses really really aggressively and my not responding to treatment didn't help either but the tissue damage in my sinuses is very delicate a just...

Mine tried that but I found I had better results with boiled water and salt its not so much inflamed anymore I just get paranoid about the smell I get from the build up of gunk even tho I wash it out...

Gosh what a week!!! So sorry for the loss of your grandma. It's hard to lose a loved one. But I hope everything goes well with your right eye and dropping the pred. Good luck with that :-)

Welcome blessed I know exactly how you feel I only found this forum two weeks ago and I felt like crying to I was so happy and have been ever since I've found everyone on here helpful and supportive...

It was only TGA approved in aus for WG last yr b4 that it was really hard to get and still not that easy and you shouldn't worry blessed I didn't respond to any of the other treatment and I have with...

I completely agree with everything that's been said I hwd a little laugh to myself reading your comment Pierre but your so right it happens all the time and people just don't get it but I suppose we...

Thank you so much its alittle disheartening sometimes but just to know that others have been in the same situation and things have turned out good makes me alot happier thank you very much for what...

Hi dorothea
I think its different for everyone I will have had WG for 6 yrs in February and im not in remission yet close to it but not quite but then I didn't respond to alot of the treatment until...

Hi jaha

I had a reaction similar to urs the first time I has rtx and I have asthma they started putting it thro slower than the normally do and I haven't had any trouble since it may not b the...

My ENT surgeon has taken pics all the way along as I have a cleanout once a year because even with the rinsed apparently I get a funny smell and I dont know coz I cant smell at all any more ive very...

Haha very true my mum always says I talk to much but a good chat can go a long way to making someones day a whole lot better :-) and I've already found that the support on here in just a few days is...

Hi michelle

Thanks for the invite I just logged onto fb and joined. It would be great to meet others who have WG and if you do plan on coming to queensland I would definitely be interested in...

Thank you sooooo much !!!! This gives me more hope to kniw that someone else was told the same thing and felt the same way I do I've always wanted kids of my own and to know that you have been thro...

Yea sorry I am on pred I forgot to mention that and with my clarinet its kinda hard to explain because you don't just blow you have to blow and bite at the same time and you use alot of your facial...

Yea I agree with you there most times when I see my dr and I tell him whats been happening he just goes 'hmmmm' nods and writes stuff down lol he is a good dr tho but when I go to the PA hospital in...

And this is why I'm upset with my weight and appearance now this was me the yr before I was diagnosed im in the pink on the left

Thanks everyone for your support the slim chance of having kids upsets me and it kinda has more to do with my kidneys than my WG because of carrying a child etc. But thank you all for everything...

I've posted a discussion that tells most of my story but the saddle nose came on gradually for me getting worse and I to have had problems with sinus infection and inner ear infections and UTIs but...

And I'm not allowed to work atm as well but I do teach a small sunday school class on sunday kids about 11-17yrs old I take the older class and sometimes I volunteer for meals on wheels when I'm well...

Oh and what really upsets me is that I can't play my clarinet anymore because its rather hard to play a woodwind instrument with air coming out ur nose because u have no sinuses lol its very...