Nose bleeding/Crusting

[henrycandy]

5 year WG sufferer- At moment feeling 'great' -Tapered down to 10 mg Pred and weekly MX 15 mg -

Have always used a 'self' monitoring system being if no nose bleeds or 'nil' nose crusting then good indicator that WG is behaving -

Does anybody else find this indicator as a self indicator of remission without relying upon intricacies of Ibloods , urine etc

Interested in feedback

Regards

Henry
i

[Rose]

Yes, I am inclined to do this. Along with urine dip sticks, BP monitoring , I also feel reassured if my sinuses are behaving themselves. A few weeks or so ago my nose started to run for a few minutes two or three times a day for about 4 or so days and I began to get a bit worried but then it stopped. I would have been more concerned had I developed roving muscle and joint pain but yes, I do think that sinus/nose health is a good indicator of disease activity( or inactivity) though I still would like confirmation from routine labs that all is well.

[drz]

They tell me that for me this is a good indicator since the course of the symptoms in your initial presentation which lead to your diagnosis may very well be the same course any flares take, (and most people start with nasal symptoms) but there is always the chance it may just hit another organ only and maybe something that has never been touched before. For me the biggest risk would be a "silent kidney flare" with no other symptoms. So far both of my two flares I've had since my first remission have been preceded by other infections which sounded the alarm and lead to early treatment.

[mishb]

I think it is the red eyes for me and the obvious joint pain.

I get a slight nose bleed every morning when first sitting up in bed, (for the last 3 or 4 years) and for the past 3 weeks.......nothing, all clear.

I was starting to think that things were on the improve. Wow, maybe I'm winning this fight afterall, and then came along Tuesday night.

I bent down to try and relieve my drink bottle that I dropped and it rolled under the couch.
When I sat back up again, the blood just started pouring out of my nose. Oh well, there goes my thoughts about winning the fight.
Thankfully a clear nose again these past two mornings.

Very strange but I don't think a blood nose for me is a sign of anything .........it's just a stupid nose

[drz]

r.

I was starting to think that things were on the improve. Wow, maybe I'm winning this fight afterall, and then came along Tuesday night.

I bent down to try and relieve my drink bottle that I dropped and it rolled under the couch.
When I sat back up again, the blood just started pouring out of my nose. Oh well, there goes my thoughts about winning the fight.
Thankfully a clear nose again these past two mornings.

Very strange but I don't think a blood nose for me is a sign of anything .........it's just a stupid nose

Sounds very familiar. Had the bloody nose for couple years, then the joint pain. One was so bad almost spent the night in the ER as it took several hours to get it stopped, all of this years before diagnosis.

Need to be very careful though about thinking you can get ahead of this horrible, sneaky, diabolical entity. I remember the time i went for labs about a year ago expecting to get some good results thinking i was finally getting a handle on this Weg stuff. I ended up fainting three times and then ended up in ER and was admitted to the hospital for several days. Don't tease the Weg dog!! Or taunt him with thoughts you got him under control. he might flare up and prove you wrong.

Recommend you get a good WEG ENT doc to check out your nose. Doesn't sound like everything is OK inside. it can quickly move into other areas you know--kidney, lungs etc.

[mishb]

Sounds very familiar. Had the bloody nose for couple years, then the joint pain. One was so bad almost spent the night in the ER as it took several hours to get it stopped, all of this years before diagnosis.

Need to be very careful though about thinking you can get ahead of this horrible, sneaky, diabolical entity. I remember the time i went for labs about a year ago expecting to get some good results thinking i was finally getting a handle on this Weg stuff. I ended up fainting three times and then ended up in ER and was admitted to the hospital for several days. Don't tease the Weg dog!! Or taunt him with thoughts you got him under control. he might flare up and prove you wrong.

Recommend you get a good WEG ENT doc to check out your nose. Doesn't sound like everything is OK inside. it can quickly move into other areas you know--kidney, lungs etc.


Thanks drz
My ENT doctors are very good and were the ones that diagnosed my condition in the first place and have treated 100's of WG patients (so they said)

My last appointment they told me that there was not much they could do for my nose and it's as good as it is going to get until they can operate on the septum and cavaties, and they wont even think about that until I am off the med's. Can I be really gross and say that at least the slug like creatures have stopped and it is really just a little crusting now (apart from the bleeding).

So I am just stuck with a .... stupid nose (it could be worse)