Bloody nose

[talentx7]

Good morning everyone. Carter woke up in the middle of the night with a bloody nose out of nowhere. we lowered his pred last week by 10mg, he is now on 40mg. And we took him off his epogen shot 3x week. He looks like he is feeling great, so I am puzzled by this. Any ideas?? Is this a flare?? Doc office opens in a hour, so i will make a call there too. He did labs last week and they are all improving. creatine down to 1.3...protien in urine still high...sed rate normal...blood counts all normal.

[elephant]

Have an ENT look up his nose. It could be low humidity? Or other medicines that can dry up your sinuses.

[Jack]

Probably nothing to worry about unless there are other symptoms too. I sometimes get random nose bleeds - not serious ones.

[talentx7]

I guess it was nothing to worry about. His creat. actually improved to a 1.1. But I was told I am to keep a watchful eye over him for anything else....like a don't already :) Talk about paranoid mothers, I may be the worst out there!

[elephant]

Your not paranoid, your a great mom!

[DEE]

i get nose bleeds that are sometines triggered by temprature change ,just a thought .DEEx

[Doug]

Like Dee, temperature changes can trigger nose bleeds. goes back to when I was a kid. I'd go watch a matinee at the movie theatre on a hot day, sit in the ice box for two, two and a half hours, then step outside and >wham< bloody nose! I'm with Jack. One symptom probably isn't a concern, but the more he has, then you need to get him to medical help. I agree! Your son is fortunate to have an on the ball mother!

[me2]

I agree with the general consensus here that the nose bleed alone is not cause for big concern. I especially second Elephants idea about humiditiy. After WG it took me a long time to correllate sinus pain and discomfort and bleeding with low humidity. (I felt dumb when I finally did figure it out)
I was not sensitive to it before. I have to avoid desert areas , my wood heat in my house dries out the house in the winter so I have to add water to the air- a lot and the worst offender... drum roll... airplanes. I took a long flight to China and by the time I got to the ground I was in agony. I had to sleep for day to recover. Later I discovered the trick of using Ayers nasal saline gel with Aloe. Wonderful stuff for short term use. I use my little finger or a q tip to line my nose and I can fly anywhere with no trouble . Oh, and I use Simulasin Sinus Relief spray bottles that are built to put spritz of saline way up into the nose. Those work great too. When in doubt try those and if there is not quick relief then you have something else going on.

[Lightwarrior]

Your not paranoid, your a great mom!

Talentx7,
Ditto to what elephant said. You are not paranoid...you are vigiliant.

[Doug]

I agree with the general consensus here that the nose bleed alone is not cause for big concern. I especially second Elephants idea about humiditiy. After WG it took me a long time to correllate sinus pain and discomfort and bleeding with low humidity. (I felt dumb when I finally did figure it out)
I was not sensitive to it before. I have to avoid desert areas , my wood heat in my house dries out the house in the winter so I have to add water to the air- a lot and the worst offender... drum roll... airplanes. I took a long flight to China and by the time I got to the ground I was in agony. I had to sleep for day to recover. Later I discovered the trick of using Ayers nasal saline gel with Aloe. Wonderful stuff for short term use. I use my little finger or a q tip to line my nose and I can fly anywhere with no trouble . Oh, and I use Simulasin Sinus Relief spray bottles that are built to put spritz of saline way up into the nose. Those work great too. When in doubt try those and if there is not quick relief then you have something else going on.

I was aware that airplane air is very low in humidity, but thanks, me2, for bringing it up, and telling how you deal with it. I haven't had reason to fly since I was diagnosed, and this bit of information for you may come in handy someday if I fly to viswit family in the West instead of drive. I know the length of time in that environment is much shorter to the West Coast than to China, but I recall having some issues with low humidity on planes when I travelled to Charleston, SC and Charlotte, NC on various company trips well before I became a weggie.

[me2]

Oh yeah Doug. You are right , even a short flight can zap you. I do the same prep no matter how far. I saw on the tube one time that they keep the humidity low on purpose because it is better for the internal components of the airplane - the electrical systems etc. .

[talentx7]

Thanks everyone, I hope it was just temp change. He hasn't had another one since!! Drs said they will help me find an ENT that is close to me, to check him out here and there. I didn't know I needed one? Does everyone have a seperate ENT doc??

[Sangye]

He only needs an ENT if he has any problems in those areas. If you're uncertain, it's a good idea to see one and get established as a patient. I've had some minor ear and nose issues and had already been working with my Wegs ENT when the hearing loss and vertigo hit me a few weeks ago. If I hadn't had that relationship I would have lost all my hearing.

[talentx7]

That is so scary. Are there any warning signs of hearing loss??

[elephant]

I would have hearing test at least every year. One warning sign is ringing in the ears. If your ears are affected from WG then you really need to be on top of it. See a ENT and audiologist and get a baseline hearing test.

[Sangye]

I agree with Elephant about getting a baseline hearing test if possible. (Insurance usually won't pay for it unless there's a problem, though.) Last year I mentioned to my ENT that I felt a slight hearing loss in one ear. Glad he did the hearing test, because when I had sudden severe major hearing loss last month we could identify what had changed.

[jola57]

In Canada hearing test is free and can be done at most of the hearing aid stores.

[JanW]

You should definitely have a relationship with an ENT since WG is a classic "elk" disease (ear, nose, throat, lungs, kidneys). Baseline sight and hearing should be established at dx. Wouldn't be a bad idea to have a sinus exam & throat scope as well.

[Sangye]

Jan, I don't know about that. When I first saw Dr Seo he set up a laundry list of consultations, tests and procedures he wanted done within the first 3 months. I'd already had very good ongoing testing in the way of bone density tests, echo, etc.. but there were other things he wanted checked/ re-checked. At the time I didn't have any ENT symptoms at all and he didn't see the need for a consult. I think a baseline hearing test is great and definitely vision testing should be done regularly. But every procedure carries a risk. A sinus/throat scope can introduce infection and if there isn't good reason for it, I don't see the point.

If a Wegs specialist said to do it though, I'd sit down and keep my silly opinion to myself. :D

[JanW]

I'm sure that's exactly why I haven't had a consult with neph, Sangye. No kidney involvement.

The scope is the only one that is invasive though. My ENT did the hearing test as a matter of course (on all weggies) just to establish baseline. My rheumy was also interested in an eye exam (particularly since I hadn't had one in 20 years) and sent me to a guy who does his RA patients (I think this was mainly because of potential drug issues -- e.g. steroids contributing to glaucoma -- or is it cataracts - risk).

I guess because of my stenosis/sinus issues I figure that if someone is looking in your nose anyway why not just go all the way...but there's no doubt that it's not a pleasant procedure, and insurance might give you problems if you don't have it done because of a specific reason -- it's expensive.

[me2]

JanW quite right. Or as Pink Floyd would say "You're bloody well right". My ENT went all the way because the whole thing is expensive and why not take a good look while you are that far anyway? Sangye is right too. Don't do invasive procedures without problems.

[Sangye]

Every Weggie should have vision checked for baseline levels, but also because Wegs eye involvement can begin silently. Sometimes hemorrhages develop on the retina and by the time you have symptoms the damage can be extensive. Lots of other eye issues with Wegs, too. For those who don't know, make sure to see an opthalmologist, not just an optometrist. If you can get an opthalmologist who specializes in autoimmune diseases it's great.

[JanW]

Yes to that...there's some special test that they run if you are on plaquenil also, which I know at least one member here is (I only know because they offered it to me because the doc thought all WG patients were on this drug...needless to say, he didn't specialize in vasculitis).