Chronic sinus infections, bronchitis, and nasal rinses.

[annekat]

Hi
I have some disturbs this days,and i think that i have problems of sinuses.i have read on internet but i didnt found nothing helpful.Can someone told me which are the signs of this problem?
Thank you


Inviato dal mio iPhone utilizzando Tapatalk

Isi, it's a little hard to distinguish the sinus problems of Wegs from the general problems that a lot of the population has in that area from allergies, deviated septums, etc. With Wegs, there is extra inflammation and granulomas, which further impede and obstruct the natural flow of mucus. More will get trapped in the sinuses, where it can cause blockages and infections. The granulomas are masses of affected blood cells which can no longer pass enough oxygen to the different areas, so tissue death and erosion of sinus bones and the nasal septum can occur. Symptoms are typically a lot of crusting and greenish mucus or large clumps of mucus that eventually work their way out, and they may be tinged with blood. People may have headaches or facial pain from all the congestion, or a very full feeling in the ears, with possible pain, ear infections, and hearing loss, from the eustachian tubes becoming inflamed and no longer allowing efficient drainage of fluid from the ears. It is all related to sinus involvement with Wegs, though people's symptoms may vary. Using some form of nasal irrigation such as the NeilMed squeeze bottle system will help a lot, as well as taking hot showers and inhaling steam from a bowl of water. There is probably a lot in the archives on sinus symptoms with Wegs, which you can find by using the search box above.

BTW, anyone can correct me in my description of granulomas and the affected blood cells, or anything else, as some of it is still pretty mysterious to me.

[drz]

We Weggies some times become reluctant to post good news some times cause it seems to often result in the Weg dog waking up and attacking with a vengeance to let us know it is still around. But maybe I can sneak this one by.

Early this year I had flu which I thought was bronchitis since I was coughing to point of being very exhausted. I also had sinus infections as evidenced by gunk in sinus rinses. My inflammation markers increased to abnormal and I had lots of blood clots and fresh blood in my sinus rinses. I got antibiotics twice and Tamiflu for the flu symptoms. The meds seemed to help some but I was rinsing several times a day to try keep nasal passages open enough to breathe OK and often added baby shampoo and dash of peroxide into the rinses along with using two or three times normal saline packets. I used the squeeze bottle at first but then later started using my Grossan HydroPulse more. I finally saw an ENT who prescribed some Bactroban (Mupirocin) antibiotic solution to use as a rinse too but they took so long to mail it to me than my sinuses and nasal rinse seemed cleared up by time it arrived so it was never used.

I think it was the frequent rinses and the reduction in my inflammation markers back to normal range that accounted for return to clear nasal rinses. I am back to rinsing only a couple times a day most days and have no blood or trophy buggers in my rinses lately.The nasal passages seem open and breathing is easy again.

I did use some extra Fluticasone nasal spray at times but other wise no changes were made to my maintenance meds of 5 mg pred and 175 mg of azathioprine. When my inflammation markers were elevated it felt like a flare to me since joint pain and fatigue also increased. I made arangements to see my Weg expert at Mayo because of concern of maybe having a the start of a serious flare but by the time I saw him things seemed back in a drug induced remission except my ANCA scores had increased from negative to borderline range. The hope is they will return to negative range and these will be checked at my quarterly reviews with my treating doctor or sooner if Weg symptoms increase again. The hope is to remain in a drug induced remission again for a long time but the Weg symptoms have increased each winter along with infections that seem to come some time between Thanksgiving and Valentine Day.

[me2]

That sounds great drz. What a story. It really illustrates the delicate balance that we live with and the shifting sands of our understanding.
I talked on the phone for quite a while to the doc that is doing the sinus study I am in. I actually wanted out of the study because I was basically stuck in the control group. Like I told the doc , that may not seem like a big deal that somebody has sinus trouble but for a wg patient it could be what triggers my next flare. Its not just sinus trouble to me.

The doc then made a compelling point that we really don't know the effect of these simple treatments vs the fancier ones (like the Mupirocin) .

I agreed that I would stay in the control group but I would bail on the very day that I thought something else might be more appropriate. I'm not staying sick so they can study it. I've been the guinea pig my fair share of times.
In one case I spent 17 thousand dollars of my own money on a treatment that was later proven to be totally ineffective for wg.

So, I'm glad you are on the upswing drz, so am I. In fact , it looks as though I will make it through their study without changing any of my treatment. I go for my final evaluation visit next week . The study will be over and we shall see what they find out in their comparison of different sinus treatments. They are comparing plain saline rinse (which is what I am doing and for the purposes of a wg patient this is the control group) , mupirocin, and finally iodine like Blake was talking about. I asked about peroxide. She said they might consider that in a future study.

I asked about baby shampoo. She said only if you have a baby. Ok, she didn't say that and I didn't ask- I still think its funny. Happy Easter everyone

[drz]

I am now just using the regular strength saline solution with rinses two times a day. It is actually the best my sinuses have been in five years.

[jakekell]

I went to a new ENT and he told me to get Ponaris Nasal Emollient I put a couple of drops in each side of my nose at night. I put some in the morning if needed and I have never had anything help me through this mess like this. I was doing every thing you mentioned drz and it is exhausting was so sick of it! I can't tell you how much better my sinus is. I am always worried about reacting to new things so tried it a little at a time, no problem. I would ask your ENT if you should use it, read a lot of good reviews on the product. I ordered mine on Amazon as I use prime

Jakekell-Mary

[Realpro325]

Drz,
I have had major sinus problems my whole life. I have come up with a system that works for me. I shower every day and rinse my nose after the shower almost every other day with a netti pot of some kind with my own Alkolol solution that the pharmacist helped me with that includes essential oils and home made saline to my liking. I also use two different kinds of nasal spray daily. One is afrin of some kind and fluticasone. The main thing I try to do is rid my nose of mucus with spray each time it gets full and this will keep the infections down as long as you rinse when you feel any substantive irritation from the sprays as they are the culprit. Yes many doctors will tell you not to use afrin spray but my rheumy says I can use all I want as it has worked for me even though some people can't go this route as long as you don't over shrink your nasal passages you won't have to many nose bleeds. I also use nasal strips at night to help me through until the morning. Only buy the good strips as those cheap clear strips are not working for me anyway. I hope this helps you. Let me know. Be blessed.

Merry Christmas,
James

[Titus3:2]

This thread is the reason I popped back in,but it took me a while to find it.The baby shampoo really works.I have been irrigating my nasal cavity two to three times a day since the nineteen eighties.GPA has not been active there for a while.My ENT scoped me through my nose ,and not long after my nasal cavity became extremely inflamed.So,I went back to my ENT thinking it was infection or GPA was back.He told me it was because there was no tissue to keep it moisturized.Well,why wasn't it so inflamed before.I could also feel crusts in there,and it was driving me nuts that I couldn't get them out.I googled nasal irrigation,baby shampoo,and found a study by Baylor.I think.Started adding a teaspoon of the shampoo to my normal mix.After three days my nose felt much better.Around day five the green crusts started coming out.I have not had crusts like that in a very long time.I think the ENT docs scope was contaminated.Thanks DRZ!

[Alysia]

This thread is the reason I popped back in,but it took me a while to find it.The baby shampoo really works.I have been irrigating my nasal cavity two to three times a day since the nineteen eighties.GPA has not been active there for a while.My ENT scoped me through my nose ,and not long after my nasal cavity became extremely inflamed.So,I went back to my ENT thinking it was infection or GPA was back.He told me it was because there was no tissue to keep it moisturized.Well,why wasn't it so inflamed before.I could also feel crusts in there,and it was driving me nuts that I couldn't get them out.I googled nasal irrigation,baby shampoo,and found a study by Baylor.I think.Started adding a teaspoon of the shampoo to my normal mix.After three days my nose felt much better.Around day five the green crusts started coming out.I have not had crusts like that in a very long time.I think the ENT docs scope was contaminated.Thanks DRZ!

Check this thread as well. Lots of good advices from my beautiful dr. Phil ♡

http://www.wegeners-granulomatosis.c...w-about-8.html

[Titus3:2]

Alysia,thank you.Phil was very knowledgeable,and his knowledge lives on.My next comment will be at Phil's "Mammoth Thread".

[Debbie C]

I don't know whats been going on with my nose but it will turn ice cold. So cold that it hurts. I hope it isn't on the verge of collapsing. Has anyone else's done this and then ended up with saddle nose or something else ?