Sinus Question / seems like small flare

[Psyborg]

Sorry if this is gross :). I've up to this point had little to no sinus involvement beyond a perpetually runny nose. Recently I've had this weird thing. My sinuses feel clear, but I will randomly get thick jelly-like mucus from them. Completely clear every time, but the consistency is what seems weird and the fact they come out of a nose that doesn't feel clogged.

I was wondering if anyone had similar, or if this was like an early step towards nose issues.

I did call my doc and she wants another RTX infusion but that was based on pain I've been having mostly.

[Dirty Don]

Hi Bob, got the exact same thing going on, has been since I was dxd for the most part. Docs aren't worried unless there's blood, of course. People ask me if I have a cold, NOT! I don't bother to explain anymore. And I spend a bit of time each morning 'clearing' it out altho that doesn't seem to do much good as the day passes. Also seems to react to the humidity a lot too...oh, we don't have humidity here, but my nose knows no different! LOL! It doesn't seem to be a 'destructive mucus' so it's become a part of my 'normal' now. Best to you!

[pberggren1]

I did have something like that Bob but can't remember when. I don't think it was during a flare though.

[Psyborg]

I talked with DR Villa Forte last night, and she said the other symptoms indicated a flare. I was curious on the sinus thing because it was new. I've had some runny-nose issues all along but the globules (for lack of a better term ;p) is new.

Had my PFT today and I'm down another 2% since 6 months ago so that kind of goes along with the flare thing too. Looks like another RTX adventure for me.

[Pete]

Hey Bob,

Do you use a sinus rinse on a regular basis? I had been having some bloody crusting and thick mucous. Dr Villa Forte suggested I use a neti-pot daily and also Rxed the Clinic's non-antibiotic nasal ointment. I've had good results so far.

How you doin' otherwise?

[mishb]

Sorry if this is gross :). I've up to this point had little to no sinus involvement beyond a perpetually runny nose. Recently I've had this weird thing. My sinuses feel clear, but I will randomly get thick jelly-like mucus from them. Completely clear every time, but the consistency is what seems weird and the fact they come out of a nose that doesn't feel clogged.

I was wondering if anyone had similar, or if this was like an early step towards nose issues.

I did call my doc and she wants another RTX infusion but that was based on pain I've been having mostly.


That jelly like stuff was the first thing I was having, way before the sinus infections started and way before the crusting started.
It was nearly the beginning of everything for me - apart from the joint and muscle pains.

I agree that it's a flare :crying:

[Psyborg]

Hey Bob,

Do you use a sinus rinse on a regular basis? I had been having some bloody crusting and thick mucous. Dr Villa Forte suggested I use a neti-pot daily and also Rxed the Clinic's non-antibiotic nasal ointment. I've had good results so far.

How you doin' otherwise?

I don't do a rinse because I've been lucky and not had much sinus involvement.

I'm doing alright, but could definitely be better. I think I've been in denial about a month on the flare. Finally decided to call when I was waking up every two hours with pain in my sleep (side I sleep on feels like it bruised/on fire almost). My labs have been great so I figured it was the weather and maybe mishandling my Pred taper, but it never went away.

[Psyborg]

That jelly like stuff was the first thing I was having, way before the sinus infections started and way before the crusting started.
It was nearly the beginning of everything for me - apart from the joint and muscle pains.

I agree that it's a flare :crying:

That was what I was thinking...that the mucus was some sort of attempt by my body to try to fight something off that isn't there. Just seemed like maybe it was a precursor to real issues maybe. It always goes away when things are under control.

[chrisTIn@]

That was what I was thinking...that the mucus was some sort of attempt by my body to try to fight something off that isn't there. Just seemed like maybe it was a precursor to real issues maybe. It always goes away when things are under control.

I 'm familiar with the runny nose as well as the thick mucus. I my case the mucus is kind of 'white' and thick, not totally clear.
When the disease is under control, these symptoms go away.
So I agree with you on this. 'Sort of attempt of the body to fight things off'. I would only add the following: 'To fight something off that is not yet there'.
I Always have to do something. Medication, extra rinsing or whatever will work.
Rinsing my nose Always is good to prevend further escalation of symptoms, but sometimes I have to talk it over with my doc and take medication.

[Alysia]

Hi Bob,
for years I had "pruductions" from the nose, big crusting and bleeding ones.
since the RTX started to work, they almost disapear, but I still have stuff from the nose from time to time, that is similar to what you are describing.
maybe this is what is going out after the influence of RTX ? :confused1:

[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 :hug2:

[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...:)

[mdjazz01]

Yes Lily I have been using the Neddi Rinse/ pot for years even before my Dx. Interesting about what you said about surgery. I had sinus surgery years before my Dx. No one was looking for Weg at that time. My question is .... do they do sinus surgery for WEg.? Is it effective? I already had a round of Rutax. in Sept. It helped my cough but now its in my sinuses. I am not under an ENT care only a Rhumey. Still looking for one on Long Island who understands WEG. This web site is great Thanks Lily

[Lilly]

Well, mdjazz01, I remember before I had wegeners, I broke my nose 3 different times, and 3 different ways. I had surg once, to rebuild the broken cartlidge. This was years before my diagnosis. And then, I began having sinus and ear infections for a year, that my EENT treated in every way known to him, and nothing worked. This lasted about a year, and then they diagnosed me. Once the wegeners was under control, they started " fixing" me...:) I needed sinus surg because there are 2 little holes in your sinus cavities located behind your cheeks. Those holes are the drainage for sinus and tears, etc. mine were scarred over and I couldn't breath, and my face stayed infected. So this was my FIRST sinus surg. The Dr said he made a hole on each side, that had become closed, he made it twice as big, as he knew even then that this could be an agressive dz. and he wanted them to stay open as long as possible. And whil they were in there, they suctioned out my sinuses through the new holes. What came out should have been clear and watery......mine was like jelly, and red and infection was all in there. I could not believe how great I felt (after recovering.....ouch!) my sinuses felt just....I can't really describe it......but I felt GOOD! Any time u have a pocket of infection in your body, it tends to make u feel TERRIBLE! I worked at a hospital for 12 yrs, so I've seen infection drainages in pts abdominal cavity, and when we drained it....the pt came alive! Instant relief. That's how I can really describe it. Instant relief! I did have at least 2 more sinus surgeries to drain them, but 20 yrs ago, they really just upped my prednisone and fixed what went wrong. Hmmmmmm........they are still doing that today, basically! Lol...I hope my experience helped u. I wish u all the best and keep in touch!

[pberggren1]

Yikes Lilly........:ohmy:, I'm so sorry your nose and sinuses are in such bad shape. I'm curious, what system do you use to rinse your nose with? The reason I ask is that there are times I will use the Neil-Med squeeze bottle with the packets and it is too harsh for my nose and it really stings and makes the nose hurt for hours or days. I typically use a Waterpik to rinse the nose out. This way I can mix my own pure salt (coarse salt found in grocery store that does not have any additives at all) and baking soda to the correct amount with pure RO water.

Glass tubes in eyes? I assume these are those flexible tubes to try and help keep the drainage tear ducts open? If so, I also had these in for a while back in 2009 but the surgery did not take so I just decided I would not have it again and put up with pussy eyes.

[mdjazz01]

Just wondering Lily & Phil what treatment you are both on? I am on 1000 mg a day of Cellcept & 5 mg of Prednisone . I had 5 treatments of Rutax. back in Sept. No more cough which is great but bad bad sinus problems.

[pberggren1]

Right now I am just taking 5mg of pred per day. I was supposed to get a RTX infusion last month as my 6th month maintenance but I decided not to because of my lung dilation on Dec 12th. So we have the RTX booked for Jan 24th but I think I will bump this again to next month because I have a sinus infection now and it probably wont be cleared up by then. I also should be on 100mg of Azathioprine but I quit that back on Dec. 11th because of the lung infection. Once the sinus infection is gone I will probably start back on it. I see my Wegs doc tomorrow and I'm sure she will give me the look for quitting it like that but after all I know what I am doing here.

[Lilly]

Well, right now I use the bottle, distilled water, the packet that comes with it, and an antibiotic powder that is in a plastic capsule that I open and put in the bottle also. Are u using tap water? When I did, a couple years back, my nose stung and burned like u talked about. I thought it was the packet, but I use it now and it doesn't burn. Only difference is distilled water. The tubes in my eyes are special made blown glass with a rim that sits in the corner of my eye. They are about an inch long each. They criss cross each other inside my nose cavity and let's normal tear duct tears that keep ur eyes moist, flow back into the tube and in my nose cavity. Otherwise I have tears running down my face constantly. I did have plastic stints that went into my tear ducts in both eyes several times since 2005 because my tear ducts clogged up and I was getting pus pockets under my eyes the size of small walnuts. I had to go to the dr and have them drained. So began the stints. I think they call it DCR or something that stands for 3 long words. I had it in one eye 3 times, then the other eye started doing it, so got them in both. Now those don't work for me, so I have the glass ones. Basically last resort so far for wegeners pts. I'm thankful that I don't have Kleenex in all my pockets to wipe my tears all the time, and it was difficult to drive wiping my eyes constantly. But the upkeep on the glass tubes is not fun either~ I'm like an old car! When something breaks I just have to fix it, and keep up the maintenance! So I can keep on runnin! Lol!!! No one would look at us and know what we go through, would they? Crazy, Crazy Disease!

[Lilly]

Right now I'm on 5mg prednisone, BP med, Protonix for my throat/horseness, Bactrim DS, MSContin ER, and Morphine sulfate IR. Calcium w/vit.D, and Boniva once a month for osterperosis. (I went through menopause at age 25, so I'm ahead of the body issues that come with age) :) LUCKY ME!!!! Hee Hee :)
I am on a 6 month Rituxan infusion regemin. I think that's it for the wegeners meds.

[Psyborg]

I'm so sorry you guys have such difficulties with the sinuses :( I can't imagine going through all that, I was lucky they caught mine before it really had a major sinus impact. I'm obviously hoping to avoid that if I can.

I'm definitely having a relapse. It's amazing how your brain forgets what it dealt with the previous time. I woke up at 3 am and it felt like my finger had been repeatedly slammed in a door. I remembered the pain immediately when I had something to compare it to :) The minor flare ups don't hurt like this. I hope I can get the RTX before this progresses to another major joint. Going to call and tell doc I need more Pred today...10mg pre-emptively isn't cutting it clearly.

[Psyborg]

Well..definitely graduated to a real flare. My sinuses seem to be impacted a bit as well as my breathing. In for RTX on Wednesday next week...so quick turn around on treatment. Debating if 20mg of pred still is not cutting it.

[Dirty Don]

Hang tough Bob...get it done...good practice for the next flare...OMG, did I say that? Sorry...

[Alysia]

I am sorry Bob. I hope you will recover soon from that flare. take care :hug2:

[KimH]

dmjazz 01, Look into seeing Dr. Lebovics in NYC. I go down there from NW CT. He is an ENT. Look him up on the vasculitis foundation website. He saw me with in week of my first phone call. There is a Dr. Spiera also in NYC. My wegeners is in my sinuses and I was so relieved after I saw Dr lebovics. Many people on this site have seen him. He consults with my rheumatologist up here in CT. I can give you his number if you like.

[khaisley]

Hubby has "unofficially" diagnosed with WG, basically waiting on the nasal biopsy. What you are explaining is exactly what he has dealt with since the beginning of October. However, his thick, white mucus has now turned to basically a thick, bloody mucus. It is very gross and he irrigates his nose 2x a day, with a med the ENT prescribed him 2 months ago when he first saw him, but was unable to diagnose infection. Same ENT yesterday that took the biopsy, he was quite surprised all the junk that came out of his nose. I hope you are not in a flare up, praying for you!

[Psyborg]

Hang tough Bob...get it done...good practice for the next flare...OMG, did I say that? Sorry...
LOL thanks for the smile :)

[Psyborg]

Had my infusion, and saw my Doctor's Nurse Practitioner before it. Basically they told me that 18 months was probably too long to wait for an infusion as I've been having small issues since about 10 months after the infusion. Also told me that getting to 0 prednisone shouldn't necessarily be a goal for me, just to get it below 5 would be good. Both my last flares came up at about 2mg of prednisone. I did mention that article that Pete posted mentioning that th ere was no evidence that RTX and Immuran did much together (which is what I'm on). She said that everything with RTX is still being investigated so that we are still learning about any protocol using it.

[Dirty Don]

Also keep in mind, that the adrenals only put out about 3-5mg/day of natural pred (don't know the name of it), so in reaching that level, it appears the synthetic is only keeping up with/replacing what the body isn't/can't produce. So, being OFF pred isn't always an achievable thing, but it isn't dangerous at lower levels...OK, not THAT dangerous! LOL...