Sinus problems and confusion? :/

[malin]

Hi guys!

I need some advice and some venting! :p

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! :smile1:

[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. :wink1:

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. :thumbup:

[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.

[me2]

Lots of good comments about sinuses. I would only add that I use Alkalol in my saline rinse water and it has been very helpful to me. Also about humidity, my nose is VERY sensitive to dry air and it causes me lots of trouble. When I fly or go to a dry climate I use a little nasal mist bottle made by Simulasin (sp?) that is the best of about six different types of nasal concoctions that I have tried. Also I swab with my pinkie the inner part of my nose with Ayer's saline gel. I can withstand dry climate with these techniques with no discomfort.
On a side note. If your biopsy was negative then how did you get a definative diagnosis of WG? Just curious , you don't have to answer.
Big dittos on seeing the specialist. It brings a new person with lots of experience on your team. Even if your health doesn't improve it improves your outlook. I know , I just did the same thing myself. It feels good to know I am doing the most and the best that I can. Then all my energy goes into living my life- the worry is greatly reduced. Best of luck fellow sinus warrior.

[freakyschizogirl]

Hey Malin, if ya did want a referral to Addenbrooks your ENT or Rheumy and even your GP can refer you. There was some confusion with me as to whether my chest consultant could refer me or not as the NHS dont allow Consultant to Consultant referrals in many cases, but i read a cover letter from the Vasculitis team at Adds and they said this wasnt the case.

Go to Adds and get the experts to have a look, i had a negative biopsy despite all the nasal symptoms, when i was first seen by my Rheumy my markers were high, 3 months later they were in the acceptable range. I was flaring, by the looks of it and no one saw it.

Johnny at Adds is very nice and friendly and not at all condescending or arrogant. And as an ENT he has an "interest" in Wegs. The Vasculitis team were good, cant fault em. I'm going back in March.

[Geoff]

Johnny at Adds is very nice and friendly and not at all condescending or arrogant. .

Got to agree. Jonny has a very positive and refreshingly 'human' attitude whenever I've seen him. He always seems to be looking for the positives which I like. :thumbsup:

[malin]

I think I'll talk to my GP or rheumy next time I see them about going to addenbrookes for an ENT appointment :)

Me2:

On a side note. If your biopsy was negative then how did you get a definative diagnosis of WG? Just curious , you don't have to answer.I was first diagnosed about 6-7 years ago thru bloods and positive biopsies in my ears, these sinus problems are a "new" addition to my life! lol! :p

[Jack]

On a side note. If your biopsy was negative then how did you get a definative diagnosis of WG?
The BVAS system is used to aid diagnosis and to track Wegener's activity. It assigns a score to each of your symptoms and test results then calculates the probabilities. The system was devised by the team who treat me in Birmingham and is used world wide in cases of vasculitis.

Freaky - glad to hear you sounding so much more positive these days. Hope you are doing well.

[chrisTIn@]

The BVAS system is used to aid diagnosis and to track Wegener's activity. It assigns a score to each of your symptoms and test results then calculates the probabilities. The system was devised by the team who treat me in Birmingham and is used world wide in cases of vasculitis.


Wow! I did not know that this existed!
Could be usefull for all of us Weggies!

Thanks Jack.

http://rarediseasesnetwork.epi.usf.edu/vcrc/documents/BVAS%20Assessment%20Training%20Manual.pdf

[Sangye]

I had a link to the BVAS that used to work, but now only this (http://webcache.googleusercontent.com/search?q=cache:pjcYiaqs5TAJ:vasculitis.med.jhu.edu/research/bvas.html+BVAS&cd=1&hl=en&ct=clnk&gl=us&client=firefox-a&source=www.google.com) cached version works. Not sure why the original link doesn't work anymore. It's easier to read than the full manual, though the manual has good glossary definitions.

[me2]

I forgot about the BVAS and have never really studied it. Haven gotten ill 32 years ago, before BVAS (I guess), before the internet (definatly), and really being lucky enough to have a sinus biopsy (after over a year of miserable undiagnosed hell) result. This whole WG thing is quite a trip. I can't recommend it but some of it has been really amazing. I've always been interested in personal growth and human potential ( through a variety of forms of religion, psychology and esoteric paths) and this illness has been a great teacher to me. Look at all the nice people I've got to meet just right here on Andrews web site- thats practically worth my sinus trouble alone.

Malin, take heart in the knowlege that WG can cometh and it can goeth. In my experience it just move around willy nilly. Some of the serious problems I used to have in my sinuses I have no longer- for many years now. Previously I suffered horribly with sinus headaches and infections.
Knock on wood, I now get far less sinus infections than the 'normal' people I know. ( I think maybe once in the last ten years)

[Jack]

I have a similar experience. My primary trouble was sinus pain and nasal bleeding and crusting, but it has never bothered me since the early days of my treatment. Any minor trouble that remains is probably due to all the unnecessary surgery I went through.

How I wish the Internet had existed at that time. With some detailed research and the information available today I might have been able to do my own diagnosis! I was so lucky that a local hospital had a specialised research unit so being treated with no knowledge on my own part worked out OK once the problem had been identified.

[me2]

Dittos to the internet wish Jack. It would have radically changed the experience for me. I actually travelled to several colleges in my state researching WG in their libraries to try and understand what I had (doctors didn't talk to you back then- especially a young guy). I found very little information and I flew blind for a very long time. I was lucky in some ways too that I did get effective treatment and then remission for a long time after. If my problems were as complicated THEN as they have been the past ten years I would certainly not have survived. Three cheers for the internet.

[freakyschizogirl]

Freaky - glad to hear you sounding so much more positive these days. Hope you are doing well.

I'm faking it Jack, lol. Nah, i have a lot of respect for those dudes at Addenbrooks. I'm up and down but in remission. Seem my Rheumy 1st March who will then, hopefully pass me back to ENT. Later in March i go back to Adds too. Hoping to be off steroids by summer, if i have any say so i will be. And fingers crossed it'll be like that for a long while.

[gurinbasra]

Just to add to everyone else's comments, I too suffer with sinus issues and on my recent biopsy where it states healed vascuilitus, I'm still having issues and my ENT told me that due to the WG, the mucus lining of my sinus has changed & thickened forever and therefore, I'll always have issues. He can however, see if it's really inflammed which with my history indicates more likely WG flare and this usually accompanies pain.

Ask, ask, ask your ENT everything - ask all the why's you can think of and if they don't know, ask them to look into it and get back to you - yes my doctors really love me!

[freakyschizogirl]

Ask, ask, ask your ENT everything - ask all the why's you can think of and if they don't know, ask them to look into it and get back to you - yes my doctors really love me!

I'm going back there armed with all the questions i can think of! They dont love me much!

[drz]

I'm going back there armed with all the questions i can think of! They dont love me much!

My guess is they love you a lot. The hardest patients for doctors are those that never ask anything and don't say much. It pays to get second and third opinions and if you are on prednisone it helps to have things repeated since some of us have problems with comprehension, concentration and retention.