Hello.. Bloody Nose

[Middlesista]

Hi Flint - be sure to write your questions and concerns down for your docs. I found this keeps me on track since prior to doing this I would forget all I wanted to ask. Sure, you can always text or call back but I much prefer the give and take of a face to face conversation. I also watch my nose situation carefully - and use the Netti Pot. I feel this is easier to keep sanitized. Those bulb syringes can hold a bit of fluid in them even after you think you have emptied it and stagnant fluid canbe a breeding ground for bacteria plus the narrow syringe could be more difficult to clean Like Pete mentioned - distilled water and pre-packaged saline packets

I do so hope you get your answers soon and start the treatment that you need to nip this in the bud!

[Flint]

Thank you so much for both responses!

[Flint]

Thank you!

[annekat]

Welcome to the forum, Nancy. I hope you don't get saddle nose but do understand your fear of it. I have it, and most of us here who do have a fairly moderate one compared to some scary pics we've seen on the web. Do you wear glasses? If so, they can really disquise the saddle nose, as you can see in my picture. I will probably not get mine surgically repaired for various reasons including cost, but might someday look into a filler called Restylane (sp?) that is made of a material very chemically close to our natural collagen. It may need to be repeated periodically but is less expensive than the surgery. A couple people with WG and saddle nose have recommended it to me, and it would still be true that one would need to be in remission or without current activity in that area. It's not clear to me that most insurance would normally cover the surgery unless the condition was affecting the person's breathing. I wish it was otherwise, and they'd consider covering cosmetic repair of damage done by a disease. In any case, I am pretty used to mine by now and just try not to let people see me without my glasses. Most of all, getting prompt effective treatment will lessen the chances of it progressing, if it has started. And if I remember right, Dr. Lebovics is, or has been, considered the top specialist in the country on saddle nose repair. July 29 is almost here, and he should be able to answer many questions for you and put your mind at ease with his expertise.

[Flint]

Thank you so much, Anne., for all the reassurance. I am looking forward to seeing Dr Lebovics July 29th. I've been on 60mg pred., and recently put on 50mg Imuran from Methotrexate. I was on Methotrexate & they switched me off. I didn't feel very well on it-. but it's just seemed to be starting to work. They said the high pred is more dangerous then the saddle nose.. and that I should worry less about that. I have lowered to 52.5.. and now my nose is hurting again., so I'm nervous. My eye also has a big black ring, and a "bag" under it.. and is often blurry. I'm being treated "as if".. I have Relapsing Polychondritis., and I am pANCA (but currently normal not high).. ANA.. and all the other EOS MPO or whatevers.. at the onset. Dr Lebovics says possibly Wegeners., possibly Churg., but it is a Vasculitis., just hasn't been properly diagnosed. I've been worrying for 2 yrs., and now I'm starting to think.. "hey maybe I'll be Ok".. Thank you so much for all your input & support! And to think.. maybe I could do the Restylane.. I don't wear glasses all the time (just for reading sometimes).. and I was hoping whatever this is wouldn't take my nose away.. but.. I'm growing to accept.. that the people who love me & are there for me.. really don't care.. and life goes on.. but.. there's a lot of grief & loss with this whole thing.. of so many things we know.. it's hard. Thank you!!!

[Flint]

PS.. Can you guys speak about nose pain? And what you may have experienced as certain things were happening? <related to pain?>