Connective tissue

[Jeffscott69]

My reumy,still hasn't said what connective tissue is along with my lupus,I don't understand how she doesn't know.I was at ENT surgeon yesterday,had 4 sinus ops,he decrusted glue like stuff from nose,really sore,said iv to go every 2 mth to get this done,along with taken antibiotics.he said no point doing another op,won't work,as it's because of immune system,infections keep reoccurring,so fed up with it.

[frog]

Hi, sorry you are having a bad time, I also get constant blocking and painful sinus, the glue and crusting is exactly what happens.

My GP cauterised one area as it contestantly split and bled.

I went to ENT and was told they couldn't detect any infection.

So now I use a steroid nasel spray, and wipe Vaseline with a cotton bud inside my nose, this helps to reduce the crusting.

Does your nose also bleed?

I hope you manage to get it under control.

Take care, Sandy

[Jeffscott69 in reply to frog]

Yes it bleeds,last op 4mths ago,got biopsy taken,said I had chronic inflamation,the smell awful at times,this was how my lupus was picked up,he cultured bloods,had high antibodies in it,now see reumy,she Thot at 1st weganers because of sinus infections,but then she said it lupus,fed up with it.

[frog in reply to Jeffscott69]

Hello again, I am so glad you mentioned the awful smell, I thought I was going a bit crazy, GP said it was a form of migraine, as it smelt of blocked drains, then old cigaret stubs. It lasted weeks and was very distressing, as I had never experienced this before, and the longer it continued the more upset I got, as I would have hated living with it continually.

The smell comes and goes, and I find myself asking my other half if he can smell it too, just in case! LoL.

[Jeffscott69 in reply to frog]

Iv asked closes friends if they can smell it lol,and they can at times,it like a gas foul smell,then when I blow nose i can often clear a lump of green/grey colour sticky disgusting stuff,smell then clears,but builds up again.

[LupusAdmin3 LUPUS UK]

Hi Jeffscott69,

We have a factsheet on 'Lupus and Mixed Connective Tissue Disease' which is available to download from our website here - lupusuk.org.uk/images/pdf/1...

We also have a information pack on lupus which i can happily send out to you if you think it would be of some help? Just send me a quick private message or an email with your full name and address and i will arrange for one to be posted out to you. [e-mail]

Best wishes,

Hayley

LUPUS UK

[Jeffscott69 in reply to LupusAdmin3]

I got information booklet about lupus and connective tissue,thankyou.I just wish I knew what form of connective tissue iv got.

[windless22]

Glad you got seen remember talking on here with you week or so ago.

This is what I'm having ent discharged me at that time no crusting.

It bleeds big chunks get stuck cause sinus headache congestion dizziness. I'm using sinus rinse again which loosens crusting gets chunks out.then do spray.im going see gp then as appears not normal I had surgery end of December so 5 months almost.it hurts only on.one side where bigger wounds were.

I'm uctd diagnosis but treated in lupus myositis clinic rheumatologist see him 1st June.

[Jeffscott69 in reply to windless22]

I have to go every 2 month to get fe crusting done,guess it something got to put up with,it's horrible.

[Jeffscott69 in reply to Jeffscott69]

Dont think ENT shouldv discharged you.

[amandajane76]

Is sinus a common occurance in sle an ctd