Sinus problems and confusion? :/

[malin]

Hi guys!

I need some advice and some venting!

As some of you might remember I have had some sinus issues and had a biopsy a few months ago etc.
I am still having problems with my sinuses, mainly sinus pain, blocked nose and a very "dry" feeling inside my nose.

The biopsy result was negative for Wegs, ENT says they can't see any crusting or anything specific except for some "reddness". My ENT says I've got rhinitis and chronic sinusitis. BUT aren't those sort of some of the MAIN symptoms of Wegs? :/

My blood work is pretty good and my last ANCA test was the best I've had in ages but my CRP and ESR are slightly high. CT scans of my sinuses come up clear as well.

I feel so confused and worried, nothing is really indicating a Wegs flare but I just can't shake the feeling that my Wegs has "spread" to my sinuses.

My Rheumy is great and she feels I might need to switch to something stronger than MTX, however I don't want to switch unless there is "real" proof that it's my Wegs. Because until now I've ALWAYS been on MTX and something stronger would mean putting my fertility at risk and also the side effects of any new medication scares me, I can't afford to be off sick from my work any more than I already am. :/

I'm considering asking to be refered to a Wegs specialist ENT at addenbrookes, but I'm not sure if I ask my rheumy, my GP or my current ENT for this?

[chrisTIn@]

I hope you can see the Wegs specialist to share your thoughts about all this. I mean the medication, the fertility risk and so on...

I recognize your feeling of 'dryness' in the nose. I have that feeling too. My Wegs specialist didn't make a big deal of it, and didn't change anything in my medication. So I found a solution myself: I started to irrigate my nose with salt, lukewarm water (allthough I don't have crusting or nosebleedings anymore) and I bought a salve, based on honey, that's called 'Nasumel'. It seems to soothen my nose quite a bit.

Good luck Malin!

[Jack]

If you were having Wegener's symptoms in your nose and sinus I think the symptoms would be more severe, at least that is my experience. The pain was unbearable, the crusting stopped any idea of breathing through my nose and the bleeds were sever enough to require hospital treatment. Not much doubt that something bad was happening! You would have thought that my ENT might have suspected more than just an infection.

Unless you are having other indicators that are sounding alarm bells, I would just treat your nose gently as suggested above. Try not to do anything to further upset it since the linings are all very sensitive and will react if provoked.

[malin]

Thanks for your replies and reassurance!

I know it's good to be cautious but sometimes it's easy to build up a "worst case scenario" in your mind, especially when you've got Wegs!

I'm using a nose oil with seasame seed oil at the moment and I also try to use my facial sauna (to do steam inhalations) which does seem to help quite a bit. After I've done about 15 mins of steam my nose does feel better for a while.
I've also been thinking about buying a humidifier and place it in my office during the day and in my bedroom at night. (I work from home).

Do you think a humidifier would help out at all?

[Jack]

Sounds to me like you are doing the right things. I have no experience of a humidifier, but it sounds well worth a try to me.

[Geoff]

Hi Malin,

It must be something in the Essex air! I've experienced the same syptoms as you over the past 2 weeks and things came to a head last week when I came very close to phoning Addenbrookes for a check up, however things have quietened down again and given the large amounts of illness in the Office I have put it all down to a bug going around. This does highlight the awkwardness we find ourselves in about becoming 'paranoid' about our syptoms and how we feel generally. I look back in my diary and guage whether I am on a downhill slide or just like everyone else, just suffering with something going around. Like many on this forum I use the Neilmed sinus sluice and find the irrigation very beneficial. Good Luck and let us know how you get on.

[Brooke]

Hi -
Not trying to confuse or scare you Malin. I have sinus issues and I have never had any pain in my sinuses. I had 2 sinus surgeries which I think helped with the breathing through my nose but I never had sinus pressure or pain. I had a lot of crusting that I got out of my nose with my sinus rinse and some blood chunks came out as well. That has improved with the Rituxan. Everybody must be different. I wonder if other people with sinus involvement had sinus pain/pressure.

[Sangye]

I don't technically have upper respiratory involvement, but during the period where my Wegs was not fully controlled I had increasing symptoms in my nose. The cartilage of my nose would get very painful and the whole thing is now softer than it used to be. The entire part of my nose below the bony bridge turns bright red and gets very painful at times. Something was damaged in the very tip cartilage because when I bump it it's extremely painful, like a nerve ending. I don't have the major crusties you guys talk about but I have more crusties than I have my whole life and have slight blood every day. I never had any of that even when I lived for 11 years in very dry Arizona. I also had a sudden, flowing nosebleed in December. All these symptoms get worse when the Wegs dog is awake or waking up.

My Wegs ENT never sees anything in there that looks like Wegs. Neither he nor Dr Seo think I have nasal involvement. I certainly don't have full-blown Wegs involvement there, but I know the Wegs spread to that area on a (so far) mini-level and that it would grab hold if given the chance.

So Malin, I do think your Wegs might not be fully-controlled with mtx. I also think the Addenbrookes docs are the best ones to help you figure out what to do.

[elephant]

Malin, I think you need to see the Weg specialist to give yourself a piece of mind. I agree with the above posts.

[drz]

Malin, I think you need to see the Weg specialist to give yourself a piece of mind. I agree with the above posts.

I agree with above: I have had sinus infections on and off for years even before Wegener's disease. Even though my Wegener's is under fair control, but not yet into remission, I still have some mild sinus and nasal issues. Daily sinus rinse often brings some some amounts of blood and mucous tinge with flecks of blood. The only sign I usually have with my sinus infections is an occasional pain behind eyeball or in a tooth and sometimes a little discharge tinge with blood. A daily sinus rinse is a good habit to help protect you from picking up any airborne disease and also helps with allergic reactions to dust or other things. If you have a lot of dry scabs or mucous it helps to keep it moist with KY Jelly, not vaseline or any petroleum based product.