Nose bleeds - quick question

[babssara]

Medics (and people on HU forums) have asked if I have nose bleeds. I've always said no. Can anyone clarify what a nose bleed is. I would describe a nose bleed as dripping blood from the nose, which I don't have, but I do have blood on tissue when blow and sometimes small clots. Thanks Babs x

[PMRpro]

I'd say that was a nose bleed - it depends on the cause and how big a blood vessel is affected. You could have something like sores on the inside of your nose that aren't healing, they might ooze a bit of blood but not drip. Still isn't right though.

[babssara in reply to PMRpro]

Thanks PMRpro, just so I know what to tell medics next time I go. Babs x

[RichardE Volunteer]

Certain types of vasculitis can cause problem with the nose and lead to nose bleeds. I think this can also happen with Lupus. This is probably why you are being asked about it.

I don't think I'd be too concerned with the symptoms that you describe at the moment but keep an eye on things. Definitely let your consultant know if it gets worse with more messy bleeds.

If you get any real gushes that just won't stop, don't wait too long. Just get someone to take you to A&E or simply call an ambulance if you're on your own. There's some advice here on the patient.uk website :

patient.info/health/dealing...

[Suzym2u Moderator Vasculitis UK]

John has vasculitis , WG ( Granulomatosis with Polyangiitis ) He has suffered with both a "clotty nose bleed" and a "gushing nose bleed", both caused by the WG. Some types of vasculitis can cause this. I have asked him to share his experience, if it will help at all.

Susan

[babssara in reply to Suzym2u]

Thanks Susan. Babs x

[John_Mills Volunteer]

John here - speaking for myself this time!!

The significance and relevance of these episodes depends on all your other symptoms (or lack of them) and any treatment you have been given or are currently receiving.

If you would like to discuss this one-one please send me a message on HU, or even better, an email [e-mail]

A stuffed up nose with light-moderate bleeding when you blow your nose might suggest the presence of granulomatous tissue in the nostrils and sinuses. This represents quite a good indicator of disease activity in ANCA vasculitis - GPA (Wegener's) and EGPA (Churg Strauss), but not MPA.

[wooddustaffected]

It's a nose bleed if there is any evidence if blood in the nostrils. They usually try and ascertain how much by asking how often this happens, or was there sufficient to fill a thimble, an egg cup, a tea cup, mug, etc. And for how long. It may be enough for them to know if it was dripping fir how long, was it dripping quickly fir example but you describe as you just did that's fine. Both myself and my husband have WG. I get horrendous nose bleeds down to quite minor ones. People exposed to any kind of dust regularly get nose bleeds, it's. Probably the crystalline silica element in it. It's sharp in its composition and when inhaled scratches the tiny blood vessels that are close to the surface in the nose causing it to bleed in varying amounts. Both myself and my husband have WG. Both been exposed to lots of wood dust containing crystalline silica. For 5 years was exposed to wood dust that had silica and asbestos in it. No surprise then we both have WG, both silica and asbestos according to peer reviewed papers can cause and have been strongly linked to causing WG and other autoimmune diseases. I had emails from 2 more scientists this week confirming it and describing how.

[babssara in reply to wooddustaffected]

Hi, thanks for the advice and information. When I was in my teens, I worked in a sales office for asbestos fibres. Worked there for about 6 years. There was always samples of the lovely! asbestos. At lunch or breaks we used to sit chatting just pulling apart the fibres. I think i'll mention to GP/Rhuemy. Thanks again. Babs x

[wooddustaffected in reply to babssara]

Hi, You must mention it to all your doctors. Get them to check out your lungs regularly. We both have WG. We're the only husband and wife couple to both have it that did not meet via a support group. Its why our Consultants said there had to be a cause for us as the odds of us both having it by chance were 100 million to 1...so more likely something caused it. Husband worked with asbestos cement boards also had high silica content. I've washed his work clothes for nearly 40 years. If you do some research when doing searches remember to look for all related titles WG, autoimmune disease, systemic vasculitis, small vessel systemic vasculitis, ANCA associated Vasculitis, there are several others too but start with those, then in conjunction with crystalline silica, then with asbestos too. I've spoken to a lot of the eminent scientists, doctors that have written the peer reviewed evidence. Crystalline silica and asbestos are very similar in properties, hence why they replaced asbestos with silica when it was banned but that was just as nad. Silica is also a Group 1 carcinogen so not 'inert-.check out the thread by 'Morgan33' on workplace exposures to silica and asbestos. Remember also that most medical doctors know nothing or very little about causes of disease so wont be able to help on that score, they treat but don't cover causes of when training. If you need to know anymore about it private message me. I've researched it thoroughly for 10 years almost. Take care.

[AndrewT]

As with 'everything else' I'd just tell them anyway.

[Tippon]

I'd always go for the safe side with anything that could be related to my WG, so I would let your medical team know. Even if it's nothing to worry about, at least they can make a note of it so that they know if the frequency or amount changes.