If crusts go away with nasal spray, can it still be Wegeners?

[alessa]

I posted here several months ago wondering if nasal crusts that are often swallowed and coughed up could be a sign of Wegeners. Because I do not have health insurance, last time I went to visit my parents in Italy, (they paid for my ticket) I saw a doctor there (exams are completely free there). When I mentioned Wegeners, she laughed (I think she never heard of it before) and gave me a nasal spray made with isotonic marine water. She told me to see a nose, throat specialist if the problem persisted. Surprisingly, this spray worked, I no longer got those annoying nasal dry crusts, but just plain normal soft mucous. If i had a case of Wegeners, wouldn't those crusts still stay, no matter what? I am back to the Stats now and could not find a similar nasal spray so I am back to getting these annoying, dry large nasal crusts and coughing them up. I also got red, itchy eyes but they get better with dry eye drops such as Systane. I would appreciate some thoughts on this.

[mishb]

Hi Alessa,

Many other conditions can cause the dry crusting of the nose......even allergies or hayfever.

You really need to have blood tests with ANCA and a biopsy of the affected area (sinus) for a conclusive diagnosis of WG.

If you see the ENT, they will be able to arrange the tests for you.

[me2]

Welcome Alessa,
My WG began 30 some years ago as a persistant sinus problem. Crusting and bleeding till I ended up in a ER for bleeding. Then I spent months seeing an ENT who gave me horse doses of every antibiotic under the sun and nasal sprays. It was too long ago, I don't remember what the sprays were. I also took decongestants.

My experience was that these things seemed to be working for periods of. As my disease progressed I found that I had periods of time of feeling better. This lead me to believe that the natural treatments I was trying were working. They weren't. The cruel joke on me was that my disease had an ebb and flow to it that misdirected my hopes.

For you? I don't know. I just thought I would share what happened to me. One thing I do know is this disease acts differently for different people and has acted differently for me over time. What I mean is the problems I had would change from one thing to another radically. It wasn't the same problem over and over.
Well, you didn't ask to hear about all that. ha
As Michelle says, get tested through your ENT. My definative diagnosis came from a nasal biopsy. They take a little snip of skin reaching up in your nose.

[Alysia]

Because I do not have health insurance, last time I went to visit my parents in Italy, (they paid for my ticket) I saw a doctor there (exams are completely free there). When I mentioned Wegeners, she laughed (I think she never heard of it before) and gave me a nasal spray made with isotonic marine water. She told me to see a nose, throat specialist if the problem persisted.

Dear Alessa,
I read this thread and the other one you wrote, where you were asking about lab tests.
maybe my questions are not for you but to everyone who knows:
I guess you are living in US ?
what is happenning to someone who doesn't have health insurance ?
(In Israel we have "national health law" so every citizen is "covered", although there are some variations, some people can afford more insurances then others, or going to private docs which are much better then the public ones).
It bother me to think that some sick people can't get what they need...
and if we are talking about WG, it can be too risky (WG can kill without treatment).
what is the law about it in US ? or at other countries ? are people being neglected just because of money ???
I thinks you should find yourself WG specialist. maybe there are some who will volunteer ? am I too naive ? maybe you should go back to Italy to your parents to get full diagnosis and treatment ?

[annekat]

Alysia, there is a new law being enacted that will enable everyone of any income level to have access to insurance that will cover their health care needs. It is not perfect, it is controversial, and there are some glitches, and we can't get into the politics of it on here because of the forum rules. And there have always been some programs available for very low income people. But there are people who don't qualify for those who still have trouble paying for health insurance, because it is so expensive. So, to answer your question, it is a work in progress....

[Alysia]

Hi Anne,
thanks for your reply.
do you mean that, today, there are people who cannot see a doc ?
(I hope we are not talking now against the forum rules, andrew, please tell us if it is so) what are these people doing if they are sick ?
I can't imagine that in US can be such a state of people.... ???

[annekat]

Alysia, I think everyone can see a doc if and when they absolutely need one. They may end up going to the ER, where they can't be turned away if in need of care. From there, they can be admitted to the hospital without proof of insurance, I think, though I could be wrong. How to pay for it will come later. People may end up with huge medical bills if they don't have insurance. Or they may qualify for Medicaid, a program for low income people. Each of the 50 states has some of its own ways of handling the health care issue. My state has a health plan for low income that is separate from Medicaid. I was on it before I got on Medicare, which is funded by the Social Security that people have paid into the system from their earnings, and is only available to seniors or disabled people. Medicaid is available to all ages, I believe, if people are low income enough and have little or no assets. I am not an expert on this stuff, and honestly don't know how some people get by. I know some would get more preventative care if they had insurance to cover routine office visits. I think it is OK to talk about this as long as we don't talk about political parties and the different things they are doing to either help or hinder the situation. There is too much opinion involved there, and it can be talked about in private messages. I guess there are historical and cultural reasons around our whole revolutionary and independent spirit, going back to the beginning of our country, why people here are very resistant to too much government control of anything and will not let us have a system like those in the UK, Canada, and other countries. And we know those systems are not perfect either. And I'm not saying what my opinion or viewpoint is on all of this. It gets to be pretty complicated. But I think everyone in the US agrees that health care reform is necessary, they just disagree on how to do it.

[MikeG-2012]

This nasty disease many of us have starts in the sinus and/or middle ear and/or eustachian tube. It is hard to diagnose unless on of the major organs starts to have problems. For may of us, that turns out to be our kidneys or lungs, and diagnosis come from a surgical biopsy of one of those organs.

If you were diagnosed with the proper tests ANCA and biopsy, I wouldn't dismiss it just because a spray worked. For years, aggressive rinsing kept my sinuses good--even when I am sure I had the disease, but before being diagnosed.

Remember, this disease is treatable, NOT curable. So please if you've been definitively been diagnosed, and the crusting is gone now, please know that the disease is still there. Just be careful, please. If you haven't been definitively diagnosed, then start seeing an ENT who has experience with the disease who can help you find out if you have it or not. I hope and pray that you do not!

MikeG-2012

[annekat]

Mike, thanks for getting us back on topic.

Alessa, I agree with Mike that having the crusting go away after using a spray doesn't mean a whole lot. Most of do the NeilMed sinus rinse system or some other form of nasal irrigation, and that will dislodge a lot of stuff that is deep inside your nasal cavity and sinus openings. Many of us find we need to do it several times for the significant chunks to start loosening up and coming out. I'd think whatever you were getting out with a spray was relatively superficial and it is probably not capable of removing crusts and chunks that are further in and you might not know are there.

I hope you don't have Wegener's, but if you do, it could be a "smoldering" case with fairly mild or moderate symptoms, and Mike is right.... with me, for example, I went on for 2.5 years with nasal, ear, and sinus problems that no one thought of as way out of the ordinary, and I didn't get a dx of WG until it went into my lungs and I got really sick. That is pretty typical, unfortunately. It bothers me that the doc in Italy laughed at you when you mentioned WG. It's also true that the crusting could be from something else. But I think you should get it checked out. Maybe you qualify for Medicaid or can get on one of the new plans supposedly available to all who need them, with reduced premiums for those with lower incomes. BTW, my dx was obtained through a nasal biopsy, as Mike described above.

BTW, I also had red itchy eyes at the beginning which were relieved by eye drops, but I'm sure the underlying problem was WG.

[pberggren1]

I talk to many Weggies in the US that get screwed by government and cannot afford insurance so they can't see a doc at all. And some I know need to see a doc ASAP and just cannot afford it.

[drz]

Mike, thanks for getting us back on topic.

Alessa, I agree with Mike that having the crusting go away after using a spray doesn't mean a whole lot. Most of do the NeilMed sinus rinse system or some other form of nasal irrigation, and that will dislodge a lot of stuff that is deep inside your nasal cavity and sinus openings. Many of us find we need to do it several times for the significant chunks to start loosening up and coming out. I'd think whatever you were getting out with a spray was relatively superficial and it is probably not capable of removing crusts and chunks that are further in and you might not know are there.

I hope you don't have Wegener's, but if you do, it could be a "smoldering" case with fairly mild or moderate symptoms, and Mike is right.... with me, for example, I went on for 2.5 years with nasal, ear, and sinus problems that no one thought of as way out of the ordinary, and I didn't get a dx of WG until it went into my lungs and I got really sick. That is pretty typical, unfortunately. It bothers me that the doc in Italy laughed at you when you mentioned WG. It's also true that the crusting could be from something else. But I think you should get it checked out. Maybe you qualify for Medicaid or can get on one of the new plans supposedly available to all who need them, with reduced premiums for those with lower incomes. BTW, my dx was obtained through a nasal biopsy, as Mike described above.

BTW, I also had red itchy eyes at the beginning which were relieved by eye drops, but I'm sure the underlying problem was WG.

Me too, with crusting and bloody noses for a couple years before the full eruption that almost killed me.

[Alysia]

thanks, Anne and Phil, for explainning the state in US. it is sad. and it is not even a 3rd world country :sad:
wg can be smoldering for years and then exploding and even killing.
Alessa, are you still around ?