blood in nose

[NicShaf]

Wondering if anyone else has experienced this. It started getting colder and dryer here in SoCal, we're used to 75-80 degrees most of the year. My nose started getting more blood in it on a daily basis. Mostly in the morning, but sometimes when I clear it throughout the day. It's not a "bloody nose", just larger specks here and there.
I really don't think these specks have ever completely gone away since I've been diagnosed.
Is this cause for alarm, or do many of you continue to see this even in remission?
I'm very low on my Pred and tapering Ctx, so I'm a little overly wary of symptoms
Thanks!!!
P.S. I'm also coming up on the one year anniversary of my diagnonis, I think that is just adding to my questioning everything...feel free to let me know if I'm over-reacting

[Al]

I'm also coming up on the one year anniversary of my diagnonis, I think that is just adding to my questioning everything...feel free to let me know if I'm over-reacting

Nicole--There is no such thing (regardless of what the doctors tell you!) as over reacting--or "overly wary"--when you have a complicated and nasty disease. Besides, as it happens, an inordinate proportion of relapses happen in the winter months. I suspect that this has to do with the fact that winter is also over-represented in the infections department. Are your blood tests current? How often do you see your doctor?

Al

[NicShaf]

Nicole--There is no such thing (regardless of what the doctors tell you!) as over reacting--or "overly wary"--when you have a complicated and nasty disease. Besides, as it happens, an inordinate proportion of relapses happen in the winter months. I suspect that this has to do with the fact that winter is also over-represented in the infections department. Are your blood tests current? How often do you see your doctor?

Al

Yes, I just had blood work done last week, everything appears normal. I see my doctor every 3 months now, I will see him the first week in December...coincidentally a year to the day I was hospitalized last year.
I had had blood come and go all year, but I still feel good overall. I went to the mountains over the summer, where the air is dry and thin, and had blood in my nose the whole time I was there. It took at least another week after I home before it fully returned to normal.
I'm going to be vigilant about my neti pot for the next week and see if that helps. It seems to mostly bleed after I've cleared some crusting out of it.

[Al]

Good, Nicole. If you suspect anything at all, though, you don't want to wait three months to talk to the doc. Inflammations can take off suddenly, and you can be in a world of hurt before you know it.

I've heard mixed opinions on Neti pots and saline washes in general. Anybody else have experience with them?

Al

[NicShaf]

My ENT highly recommends the Neti pot, especially to keep moisture in the nose. I don't like doing it, but it does seem to help when the weather is dry.

So, shortly after I posted yesterday, I get a call from my doctors office...I think this is why I should always listen to my intuition. My last tests done a week ago show my ANCA levels at 1:40. They have been less than 1:20 for about 6 months now. All other tests were normal.
On Monday/ Tuesday, I thought I might be catching another cold, I've had a scratchy throat and today it has turned into a slight cough with sputum. The sputum in my nose and throat is clear so far. Besides this, I feel fine.

My Rheumy is on vacation until Friday, I sent him a message this morning so he'll get it when he gets back. I received the call because the Rheumy covering for him felt I should know...although he had his nurse call, and she didn't know what an ANCA was or what the actual level was when she called. I had to email my Pulmonologist to find out more info. I was totally peeved at the way the "acting" Rheumy handled the situation. It has made me upset and worried now, and they won't do anything until tomorrow anyway when my Doc gets back...some people just don't think, do they?

Now I'm questioning everything. I'm afraid, I don't want to have to start all over again, I've come so far this year.

What are your experiences with flares? 50mg of CTX and 3mg of Pred when the tests were done last week. I dropped to 25mg of CTX as of Sunday. (and Bactrim and prilosec, as always)

[Sangye]

Nicole, if you're "only" having mild blood in the nose it doesn't sound like major Wegs activity. You can assess where you're at by using the BVAS. They definitely shouldn't base a treatment on the ANCA-- it's too unreliable.

Even if the Wegs is a bit more active, you wouldn't necessarily have to start over. Sometimes a small bump in pred will do the trick. Or sometimes just pausing before tapering the ctx any further. You have to sneak away from the Wegs dog. If you move too fast, you'll wake him up again.

[drz]

Good, Nicole. If you suspect anything at all, though, you don't want to wait three months to talk to the doc. Inflammations can take off suddenly, and you can be in a world of hurt before you know it.

I've heard mixed opinions on Neti pots and saline washes in general. Anybody else have experience with them?

Al

Every doctor I have seen seems to recommend a daily or twice daily sinus rinse. I usually use the squirt bottles from the drug stores unless i have a lot of resistant stuff, then I use the electric power pump model for nasal rinses. During a cold,infection, or flare doctors recommended using the rinse several times a day. The key is to be gentle and use too much force, especially if nose is plugged.

[RCOSSIO]

I like the nasal rinse, especially for post nasal drip that does not clear.

[drz]

Nasal symptoms seem the hardest to get rid of, even when the doctors say you are in a drug induced remission. If you are blowing up big chunks of blood clots, that most likely means a flare. A small fleck or tinge of blood now and then can happen even when you are considered in remission according to my experience. It can be hard to discriminate, especially during winter months when furnace dries out air and humidity drops in northern climes. For years the ENT docs told me this was causing my bloody crusts, but funny thing they went away after treating for GPA, at least last winter except when I had big flare in March.

[Rose]

I am feeling much better now that I have started on treatment for sinus/verigo treatment caused by mastoiditis. Also noticed by my ENT when he examined me 2 weeks ago was an ulcer in my nasal cavity which I was not aware of...no bleeding or bloody tinging of nasal discharge......or pain for that matter. I am aware of it now. Yesterday, i awoke to a massive bloody nose and I then had a few bleeds throughout the day. Even before diagnosis I think I had only one bloody nose and it was a mild bleed. I had some crusting and the occasional bloody streak but for the past few years all has been well there except for a bit of a persistent clear post nasal drip.

I am a bit confused. I do not feel as if I am flaring (on 50mg of pred) but that was one bad nose bleed. I have another appointment with him later today so luckily I"ll get it checked out soon!