Hello.. Bloody Nose

[Flint]

Hi.,
Sorry I'm posting my concern in my introduction. I am not diagnosed yet. I have pANCA.. and various things. I'm being treated as if I have "relapsing polychondritis"- I was on 60 pred due to pain in the bridge of my nose. I've been doing a Neti Pot for a good year. Mostly it is plain "snot"-
I just started Imuran (2nd day)- and was on Methotrexate., but didn't feel well (so just switched)
I tapered pred to 55mg over the weeks (they want me to lower)- and I just started having bloody chunks in the Neti Pot (the past few days 4 -5 )., and tonight almost like a bleeding nose.
I actually am feeling better, tho..
But I'm assuming this bloody chunk & other blood is not good? Or is something cleaning out.. and this is good? It is bright red., but the chunks (a little small but still there..)- are darker.. and some have some dark brown.. a little gross. I am actually deciding not to worry.. but maybe this is bad? Or "active"?
My whole fear has been my nose falling in the whole time., and it is changing., and is sinking in a little.
An expert ENT (Lebovics in NYC).. is the one who suspect RP., and says "definitely a Vasculitis too., but the problem is the Drs haven't diagnosed.. nOT that you DonT have it "- Wegeners was mentioned in my paper work.. It's what I've believed I've had all along since my first blood test in 2012 (pANCA).. when there was no nose involvement.. but only my ankle swelled.. and I had "asthma".. and couldn't get myself up the stairs (because my legs muscles and arms were so weak.. after climbing a Catskill mountain a week or two before)- - It's taken me all this time.. to finally get someone to "listen"- I looked it up myself from the beginning.. and have been "pushing".. because I'm told nothing's wrong from all the local Docs at the beginning. Anyway., That's my introduction so far! Hope I did that right! But.. I'm afraid of this bloody nose. Can you guys advise? Thank you!! =) -Nancy

[cjhnsn29]

Hi Flint! Welcome my Drs told me to never use the net pot. They said it is not good and causes bacteria using them. I was told to use baking soda and salt mixed it real good in warn water. Dr's told me the best thing to use is like a ball for your ears. Use the baking soda and salt with the big blue ear for wax. This was told to me by my Internal medical Dr and also my Ear nose and throat Dr. I am just telling you what I was told. please check with your Dr to see what he says. C.J

[Pete]

Hi Nancy,

Dr Lebovics is a Vasculitis specialist. I suggest you see him and get a more thorough exam. There's something going on in your nose, and I'm confident he can figure it out.

Many of us here use a neti pot. Use distilled water and the pre-measured saline-soda packets (available at any drug store), follow procedures for sanitation, and you should be ok.

[Flint]

Hi..
Thanks! I'm glad because I have an appt. w/Dr Lebovics July 29. I guess I'm just nervous because this just started happening.. and I wonder if a lot could happen between now & then.
I just started Imuran & was switching from Methotrexate. I'm on a lot of pred.. that they are wanting me to wean (& that's when this started.. just going down from 60 to 55.. slowly <2.5 each week>- But.. today is the 3rd day of Imuran.. and there was less blood. It seems a little clear now.
Thank you for all the advice! It really helps not being alone with this stuff.. Thanks for having me!!

=)
-Nancy

[drz]

Hi Flint! Welcome my Drs told me to never use the net pot. They said it is not good and causes bacteria using them. I was told to use baking soda and salt mixed it real good in warn water. Dr's told me the best thing to use is like a ball for your ears. Use the baking soda and salt with the big blue ear for wax. This was told to me by my Internal medical Dr and also my Ear nose and throat Dr. I am just telling you what I was told. please check with your Dr to see what he says. C.J

If you rinse out the Neti Pot with bleach and wash it between there should be no problem with bacteria in it. Using distilled or boiled water is another safeguard recommended. Most of us use the Neil Med squeeze bottle that you can get at most drug stores or one of the power sinus Rinse machines that hold more water. Most ENT doctors also say one can't rinse too much although it could be a problem some times for some people. They also don't recommend rinsing with any force when the nasal passages are plugged since that might force water into the Eustachian Tubes or maybe into the middle ear. Generally frequent rinsing is the best thing one can do for infected sinuses besides taking a prescribed antibiotic for serious infections or rinsing with an antibiotic wash.

[Flint]

Thank you! Is blood from an infection? In the past.. they said my nose looked "good" inside.. (no damage kind of thing.. but no blood)- However., there are some dents happening (indentation).. on the outer bridge (that I notice., and some people close to me are starting to notice)- and Dr Lebovics noticed a bit., and said that it could be cartilage., that he can not see from inside. So that was last visit., and I have one coming up. But the "blood" is new. I haven't been explained by any Drs what any of this means <because I'm not officially diagnosed>- Just reading.. and trying to learn myself.. (even tho they say not to do that.. thank goodness I am !! That's how I got this far! =) )

[drz]

Blood is usually from Weg activity. A steroid nasal spray often helps with that along with frequent rinsing. During big activity in nasal area one can get some real trophy buggers and there is a thread on here with real vivid pix of some if you are so inclined. Some times more pred meds will also helps reduce such problems.

Most people with Wegs will have some nasal activity and bloody rinses, scabs, and crusts are the usual signs. Saddle nose can develop too but most people don't get that but many do from the slow erosion in nasal area caused by Wegs. Some times this can be repaired with surgery once the Wegs is no longer active in that area.

[Flint]

Blood is usually from Weg activity. A steroid nasal spray often helps with that along with frequent rinsing. During big activity in nasal area one can get some real trophy buggers and there is a thread on here with real vivid pix of some if you are so inclined. Some times more pred meds will also helps reduce such problems.

Most people with Wegs will have some nasal activity and bloody rinses, scabs, and crusts are the usual signs. Saddle nose can develop too but most people don't get that but many do from the slow erosion in nasal area caused by Wegs. Some times this can be repaired with surgery once the Wegs is no longer active in that area.


Thank you .. I was wondering.. why I might be having "activity..".. when I'm on the steroids.. (tho this happened when I lowered from 60 to 55 slowly).. I was gonna lower 2.5 (they told me.. but I haven't been able to get in touch to double check)- or if lowering could make it worse. I'm also on Imuran. I was on Methotrexate.. but didn't feel very well.
I was going to ask..
Why can saddle nose only "sometimes" be repaired.. and not all the time? I do see a little happening.. and everyone says they don't see it. It's my biggest fear. I was panicking.. thinking.. it's about the worst thing. I would like to see that website.. Maybe I can look for that thread. Thank you!!!

[drz]

If the erosion in nasal area from Wegs is still on going surgeons see little point in repairing it since it won't last and may not even heal up.

[Pete]

Thank you .. I was wondering.. why I might be having "activity..".. when I'm on the steroids.. (tho this happened when I lowered from 60 to 55 slowly).. I was gonna lower 2.5 (they told me.. but I haven't been able to get in touch to double check)- or if lowering could make it worse. I'm also on Imuran. I was on Methotrexate.. but didn't feel very well.
I was going to ask..

Prednisone is an anti-inflammatory to help you feel better. Immuran is an immunosuppressant to halt your immune system's attack on your body. The immunosuppressant drives you toward remission by helping your body to heal and to prevent disease relapses. What to use and how much is what makes treating the disease a combination of art and science.

[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?>