Sinus Question / seems like small flare

[MikeG-2012]

I believe that ANYTHING that is out of our "normal" should be considered as being a potential symptom of a flare. I think we all need to be aware of simple anomalies that are outside the norm, and no matter how small, document them or tell our physicians. Maybe it seems like nothing this time, but it might be a precursor or indicator of a flare up. I wish I had known that my sinus issues were this for me. I might not be this bad off this time had I known that my sinuses are going to be my trigger/indicator of a flare. Those little annoyances that became symptoms, in hindsight, were major indicators!

My ENT said yesterday, "The thing about Wegeners patients is that there really isn't a book that we can refer to. Each patient and their doctors are writing their own volume as we go along."

MikeG-2012

[DJS]

I believe that ANYTHING that is out of our "normal" should be considered as being a potential symptom of a flare.
My ENT said yesterday, "The thing about Wegeners patients is that there really isn't a book that we can refer to. Each patient and their doctors are writing their own volume as we go along."
MikeG-2012

Amen to that! My wife had her monthly blood draw on Dec 26, and her Rheumie called on Monday and asked if she was feeling OK? Apparently there were two markers that were higher than normal. So we took the 60 mile drive down to her office for one more draw to look at the main GPA marker. Got a call today that all was ok. We are leaving for AZ in the morning and we didn't want to be surprised when we got there. She says she will wear her mask on the plane. By the way, she has been off all medication since August and I think her DR worrys about that.
Dennis

[Debbie C]

Bob, what I don't understand is if all the blood work comes back good,then how do they determine it is a flare?? You would think something would be off. I'm just wondering because my bloodwork always comes back good ( I say that now,but I'm due to have it done for this month ) and there are days I feel like crap but he's says not to worry about anything ,so I don't. But why wouldn't they up your preds instead of going straight to rtx ?

[Psyborg]

I think because it has been 18 months since my infusion. As far as the labs you've got me? I'm not sure how that works. Think it is the combination of symptoms. They did up the pres but so far not much relief.

[Lilly]

Alysia, my nose and eyes are the main target areas for my wegeners. The crusting and all that goes aling with it has been so destructive, my sinuses have slowly been going away. So now I don't have any sinuses left. I cannot taste flavors or smell anymore. Is yours like this? I have to irrigate each day with a special sinus rinse with an antibiotic in it and use distillers water. It's a pain to have to do this every day, but if I don't, then it's REAL pain. All in my face, and sinuses and ears. How much of this have u experienced? Just wondering. Haven't heard too much about it on here yet.

[pberggren1]

Lilly, what do you mean that you don't have any sinuses left? How long as this been going on? Also, when was the last time an ENT or any doc looked in your nose or did a scope in your nose? This sounds like an infection that wont go away.

[Lilly]

Well, Phil, I understand your question because I have seen my PCP, and my EENT that just did surg on me along with my eye surgeon.......they look at a X-ray of my sinuses and their mouth drops open. There is just an open cavity, and there is no rt or lt side, it's just one big area. That is why I have to go to my EENT about once or twice every 2-3 months to have him numb the unside of my nose, and with a camera scope, and his hemostats, he and his nurse peel off the crustations that are getting large and blocking my airway. I irrigate daily and use a q tip to gently remove what I can, and yes, both procedures are very painful. I have to take morphine daily because my face hurts so bad, my teeth ache like they are all loose, my eyes hurt, and every irrigation is very painful. I have to b careful not to mess up the glass tubes my eye surgeon has placed in the corner of each eye. Right now, as we speak, I'm waiting for my pain med to kick in so I can try to replace the tube in my rt eye. It has moved down too low, and I'm going to have to find the end of it and push it foward so it's sitting correctly, or I'll b going to my eye dr tomorrow. I know it's difficult to believe, but my EENT and eye surgeon are my MAIN DRS right now. I wish I had a camera like he does so I can clean my nose thoroughly, because when I go for my cleanings, sometimes he says " Lilly, I don't know if I can get this one out through your nose, it's very large. But I just say "GET IT OUT IF THERE PLEASE!!!! I AM TIRED OF FEELING IT IN THERE!!!" He doesn't want to hurt me, but I don't care. A few seconds of pain is worth being able to breath! I hope I did not gross u out too much. I am a weggie that does not ever really go into a true remission. I have started a plan if rituxan infusions every 6 mo. My nose has been like this for awhile, it's just been a slow progression. I had the surg this past Dec 24, it was with both Drs, putting glass tubes in my eyes, and EENT cleaning out my nose really well. Feel free to ask any more questions......I tell it like it is....this disease is not a easy one to deal with sometimes. But I'll surely tell u what it has done to me!

[Alysia]

Hi Lilly,
It sound tough and aching and you are a true hero with your handling of it, physcally and mentally.
I think maybe Barbara is in a similar condition.
I think you should go for the rtx, to get into remission.
lots of hugs to you

[mdjazz01]

My symptoms are all in my sinus now. I can barely breathe they are so stuffed, especially at night. I don't feel my Rhumey takes my symptoms seriously. It might be time for a change my Dr. Any one know of a knowledgeably Weggies specialist on Long Island NY?? These symptoms are debilitating and I cant function around the house. Havent worked in years.

[Lilly]

Hi mdjazz1, well, my nose deterioration happened slowly over years. But have u tried over the counter irrigation system? It's called NeilMed Sinus Rinse. It's for a LOT of sinus issues, just people with allergies, up to people with medical conditions, and lots of issues inbetween. My sister and her husband use it just to help allergies in summer, and dryness in winter. It comes with a bottle, premixed packets of a saline moisturizing granulated packets that you use. I noticed, this last time my dr prescribed it after my surg, I was reading the booklet that comes in it, and there are many clinical conditions drs prescribe this for, and wegeners was now listed! Ive had 2 drs prescribe along with their own prescribed RX to add to it.....so if u have not tried it, I would say see if it gives u any relief! It softens congestion and blowing your nose is so much more productive....and it's soothing. U can buy it at your local drug store or discount store....if u can't find it, u can order it online ---www.neilmed.com --- or toll free in USA & Canada 1-877-477-8633. They have other products that may suit u better, but it couldn't hurt! Good luck, I feel for u because I know EXACTLY how u feel! I think that if I could have used rituxan years ago, maybe I would still have my sinuses.....but I have my LIFE! And that's what counts at this point for me~ best of luck, questions welcome.....I'm totally honest...