View Full Version : Those with Sinus involment

03-31-2010, 06:43 AM
I forgot to mention on my post about the Mayo clinic visit, the ENT gave me some sesam/rose geranium oil that I spray in the nose, it is supposed to be like a lotion for the nose and they said only Mayo prescribes it because their ENT docs came up with the mix. I spray it after I use my nasonex and it is actually pretty soothing and smells nice.
So if this interests anyone you could ask your doctor about it.

03-31-2010, 06:52 AM
Why do you use it? What symptom does it help with?

Do you use nasonex for allergies also?

03-31-2010, 07:05 AM
The ENT actually just prescribed both while I was there last week. He thinks it may help with the inflammation in my nose. I just have a little crusting in my nose and it is dry. I guess it must look a lot worse then I feel because my sinuses have never hurt or bothered me before.

03-31-2010, 07:20 AM
I used nasonex for years when the thought was that I had allergies. Since I had my stenosis fixed, it appears that I don't have them anymore (I think they just don't bother me because I can actually breathe again). Just be careful, because it contains steroids as well (says she who now has osteoperosis).

03-31-2010, 07:22 AM
Thanks for the information Brooke. I need to find out about it.

03-31-2010, 07:52 AM
Yes, they think the steroid nasal spray may help, so we will see.
You are welcome Elephant, let me know if you need anymore information about it:)

03-31-2010, 08:18 AM
I use sesame oil as well Brooke. I wonder what the Rose Geranium mixed in would be like!

03-31-2010, 08:21 AM
It smells nice!

03-31-2010, 08:26 AM
Oh, for Pete's sake. MDs poo-poo the use of remedies like essential oils (used for centuries) and sesame oil (also used for centuries, especially in Ayurvedic medicine) until they find a way to make money of it. They really like to say "We invented it."

Save yourself cash, time and effort and make it yourself. You can buy all 3 things-- rose geranium essential oil, sesame oil and little spray bottle-- in any health food store.

03-31-2010, 08:30 AM
It isn't too spendy so I suppose I will just use what they gave me for a while.

Cindy M
04-07-2010, 04:56 PM
Has anyone else lost their sense of smell. I have and I was told I would not get it back. Can't believe how much I miss it. It's actually kind of scary. I was out BBQ, answered the phone and forgot that I had chicken on the BBQ, needless to say that by the time I remembered I had slightly burned one side.

04-07-2010, 09:20 PM
Cindy how long have you lost your smell? Mine comes and goes too. It is annoying, some days I taste and smell good and others days it is very diminished. It is medicine and WG related. I personally would not believe you won't get it back.
Are you in remission?

04-08-2010, 09:07 AM
I go through the same thing Elephant. My taste and smell has basically been non existent since last October. I was able to taste and smell a little bit yesterday for about an hour and had a nice lunch - beef taco salad. I can definitely sympathise with you Cindy of not being able to smell. How long have you not been able to smell? Does it come and go in any type of cycle?

04-08-2010, 09:34 AM
That would be very scary for me. Being able to detect odors keeps my bird alive and my own lungs okay. I hope all of you recover that ability for good.

04-08-2010, 09:39 AM
I think that Jack said once that he couldn't taste or smell for a few years ant then it came back and then went again for some time again and then came back again. Poor Jack. He has been through alot.

04-08-2010, 11:53 AM
Cindy, Phil and elephant, I hope your taste comes back at least once in a while. I would be terribly lost without it.

04-08-2010, 12:02 PM
The interesting thing is when I can't taste, I look for quality food. Then when I can really taste something that's when I want something really good...muffins....chocalote shakes....oh see how I go for the sugar. ;)

04-08-2010, 12:25 PM
:)[QUOTE=pberggren1;13850] taco salad. QUOTE]

Thanks for a great dinner menu idea, Phil. The Taco Salad was excellent!

Cindy M
04-08-2010, 04:26 PM
I have not been able to smell for probably about 10 months. My ENT said that there is too much damage so there is very chance, next to nil that I would get back my sense of smell. I do a times get a whiff of things but I don't know if that is just my brain triggering something, my imagination or the real thing. It really is just a second or less of smell. I do have the ability to taste, it does have to be on the stronger side, but I think if I lost both it would be difficult.

04-08-2010, 10:04 PM
It was probably confirmed by a CT scan of your sinuses. I totally understand Cindy. I have permanent damage to the Maxillary sinus. I am hoping that your smell might come back. I am sorry to hear that. I too eat stronger smelling/tasting foods.

04-09-2010, 04:06 AM
My sense of smell and taste seem to come and go as well.

04-09-2010, 09:33 AM
BBQing a blackbird, Cindy?

04-10-2010, 10:32 AM
Hi Cindy, you are not alone, I haven't had a sense of smell or taste for a I don't know how long (although it doesn't stop me from eating..lol good old Pred), I find it really depressing when people are enjoying a lovely meal or even better, dessert :-) and raving about it and I find myself just agreeing with them, but at the end of the day it tastes like nothing....I guess now for me its all about the texture of food.

What does concern me with the lack of smell is i worry if there is a ever a fire or anything like that, cause honestly the neighbour burnt toast the other week and I had friends come over saying can you smell smoke in the hallway, its terrible, nope sorry couldn't smell a thing (therefore I have extra smoke detectors placed around my unit), its a bit scary!!

04-11-2010, 12:54 AM
That's very scary! How are you feeling these days, Kat?

04-11-2010, 11:37 AM
Hey Sangye, yes to smell would be a wonderful thing, sometimes I feel like getting a couple of drinking straws and sticking up my nose...lol

I am doing heaps better joint wise, but energy levels are zapped still, do you think its worthwhile looking at any herbal energy boosters (thought you'd be the lady in the know)? Last night went to watch short film festival in the park and was home by 10pm, I've only just dragged myself out of bed at 10.15am and feel exhausted, actually it feels like when your coming down with the flu...its ridiculous, I mean I was just sitting there watching movies.

As for my sinus area and crusting, my word they are getting worse (on another thread I posted reply that my ENT see's me weekly now and also wants to up the Pred) - the sinsus isn't responding, well it seems to for a few weeks and then resorts back to its old self, sinus area is extremely sensitive and the crusting is like nothing I've seen before (even took a photo this morning to show my ENT as it doesn't seem as bad when he cleans it out but he doesn't see it first thing in the morning either, I'm talking thick/bloody/crusting as long as my index finger...gross I know...but that's what i deal with at least twice a day (and yes I sinus wash and lubricate daily and also use nasal spray throughout the day at work - nothing helps). :-(

And how are you traveling on the WG road?

04-11-2010, 12:51 PM
do you think its worthwhile looking at any herbal energy boosters?
No-- that's very bad idea. They work by stimulating the adrenals, which stimulates the immune system. That works against the drugs. Also, pred depletes the adrenals quite profoundly, and stimulating them with herbs is like whipping a tired horse. Very damaging.

The exhaustion might be par for the course for having active Wegs, but it might also indicate your Wegs is not being controlled well enough by the meds you're on.

04-11-2010, 01:39 PM
I agree with Sangye, Katwoman. Wish the Rhuemy can find a drug that will fit you. It does sound to me that your WG is active and makes you tired. The bloody nose, that is active WG. I get asked often by the Rheumy if I am having crusting, bloody nose, coughing more that usual, short of breath, joint pain, more fatigue....that is how I do my head to toe assessment.

04-11-2010, 03:42 PM
Thanks Sangye, will steer clear of them, just wish I had more energy, I'm 36 but feel 63 sometimes!

04-11-2010, 04:19 PM
hi katwoman i have the same nose problems as you the crusting is the torment of my life .
people dont understand how annoying it is having to clear your nose on a daily basis just to breath easier
and at the moment i have a constant whistle sound which is caused by the perforasion which im seeing ENT on 23rd april but wg consult says he might not want to repair will wg active depends how bad it is
i was adviced to stop using nasal sprays by two consults because it was making it worse but i do use Batroban regularly
im still on 30mg of pred and that seems to have helped relieve sinus pain anything less at the moment and i swell up straight away

04-11-2010, 04:27 PM
i was adviced to stop using nasal sprays by two consults because it was making it worse

Hi Dee, sorry the nasal spray I was referring to is Fess non-medicated isotonic saline solution, so basically salty water.....I don't use the steroid based nasal sprays. Hope your appointment goes well on 23rd, make sure you let us know!

Wish I could have my nose repaired, my sister-in-law took some photo's of me with my new niece but i deleted them as they were side on and my nose is just aweful - I hate it!!

04-11-2010, 04:42 PM
i did the same with a photo that was took on my daughter 30th birthday but she was cross said it didnt matter
i make wash with bicarbonate soda -sait and sugar have been doing since orignal nose surgery but try to limit to morning and night DEEx

Cindy M
04-15-2010, 04:09 PM
Hi, I can relate the sinus problems. The crusting is awful. I do a sinus rinse twice a day and some days I still get quite a blockage and it is extremely painful. I have been having alot of sinus pain, teeth pain etc. I have also been getting more nose bleeds so I know that WG is not under control at all. I have an appointment with my rheumy tomorrow so I am hoping for some changes to my meds. I am still on 60 mg of preds a day and 150 mg of Cyclo a day which is causing me to have quite the upset stomach.

04-16-2010, 12:21 AM
Hi Cindy, how long have you been on 60mg of prednisone. Hope all goes well with your Rhuemy and the medicines get changed or increased. I agree with you Cindy on that your WG is active. Keep us updated. good luck!

04-16-2010, 12:39 AM
Cindy, are you taking an acid-blocker for the pred? If it's the ctx that's upsetting your stomach, you can usually split it into 2 or 3 doses. As long as I took it in 3 doses my stomach was fine. Check with your doc, of course.

My docs told me as long as I got the full amount of ctx in, they didn't care how I split it up. Taking it all in the morning makes it easier to flush it out of your bladder all day and keeps you from being up at night to go to the bathroom. I chose frequent nighttime bathroom trips over intense stomach pain.

04-16-2010, 02:57 AM
I agree with Sangye, it doesn't matter what dosage or when as long as it all gets there. That's what I was told.

04-16-2010, 03:49 PM
How exactly did they fix your stenosis?

Cindy M
04-16-2010, 03:57 PM
I have been up and down for the last year. The lowest I got down to was 40 mg but that didn't last long. I went to see my Rhuemy today, not much of an improvement if any on my blood work. What she has decided because the high dose of preds is not working, the cyclo that I have been on for a year now is not working, the rituxan IV that I did in Aug/09 (2 sessions) did not work that she would like to get me onto Cellcept. She also wants me to lower the preds because it is causing more harm than good. It has helped with the eye flare up but not the sinus. I am lowering my preds by 5mg per week, and monitoring myself for any changes. I went to the pharmacy today but my insurance does not cover me for cellcept so she is going to put a request in and see what happens. Until then I will stay on cyclo for now.

04-16-2010, 08:40 PM
I am glad the Rheumy is reducing your prednisone. I am on Cellcept 2000mg a day, they might increase it to 2500mg. IT's a wait and see. I am tapering my prednisone 1 mg every 6 weeks. I am also on cyclosporine ( this medicine lower the immune system and i take it for my kidney transplant). I am wondering if there has been any research on using three medcines at a lower dose to keep Wegeners in remission.
Cindy, I hope you can get the Cellcept, I have no problems with it so far. I have been on it for a year now. Cindy mabey you need more infusions of the RTX for it to work, I bet Sangye would have more to say on that subject. Thanks for the update.

04-16-2010, 11:45 PM
Well, yes I do! Cindy, you said you had 2 sessions of rtx. I assume you mean 2 infusions, 2 weeks apart? That is the milder protocol. The other protocol is once a week for 4 weeks. I can't imagine calling it a rtx failure if they only did the milder protocol.

I was on Cellcept-- great drug, but it doesn't induce remission or get Wegs under control. It's not strong enough. They have to use a big engine--ctx or rtx-- first and then put you on Cellcept to maintain it. That's what my Wegs doc at JHU said. Have you called or emailed the VF to ask about getting a VF consultant doc to work with your doc? Sounds like she's floundering.

04-17-2010, 12:12 AM
I'm with Sangye on this one -- to some extent I can understand a doc trying out different things to see if they will work if there isn't a sense of urgency (like my case) but Sangye is right, Cellcept isn't what you go with when rtx doesn't work. To give an example, in my case I am on mtx, 15 mg to start, and no pred. I have two classic WG symptoms, SS and saddle nose, neither of which track disease activity (meaning that they don't necessarily get worse if your disease gets worse), but I do have all of the blood markers for the disease. That having been said, I went from some pretty severe nasal crusting to none at all over the course of about the first six weeks after diagnosis, despite no therapeutic treatment, so, to my doctor's mind, the tempo of my disease is such that he doesn't have to pull out the "big gun" of pred (he considers it a big gun, I know that not all do but he says that it is increasingly being seen that way in the rheumy, though not general doctor, community). He told me last week that if my liver couldn't tolerate mtx he would go to Imuran (he thinks that Cellcept is getting all of the hype right now because some research suggests less cancer risk -- however, the drug is not as old as Imuran, so who knows) and then to rtx (and he was looking at the milder protocol). Luckily I'm okay on the mtx for now, but, like Sangye says, he definitely considers Imuran and Cellcept in the same range as mtx...not a first line for someone having major medical issues and severe flaring.

04-17-2010, 04:07 AM

How long have you been on ctx this round?

04-17-2010, 09:15 AM
i make wash with bicarbonate soda -sait and sugar have been doing since orignal nose surgery but try to limit to morning and night DEEx
Dee, why do you use sugar?

04-17-2010, 09:21 AM
Ya, I was going to ask the same thing DEE. How are your sinuses right now? Do you use non-iodized salt?

04-17-2010, 04:50 PM
sinuses slightly better not so much crusting although still on occasion get larger chunks washed out i have used bicarb - salt and sugar combination since i was in hospital with first flare
ENT consult gave instructions sheet and has always said important morn and last thing at night
maybe i should not take things as gospel and ask more questions about things
as i may have said before i see him on fri pm about sorting perforasion out will ask him why sugar then
a question i was going to ask is when sinues are bad does it affect your hearing as mine always feel as if full and hubby keeps tellling me about having tv up and hes deaf in both ears !!and wears hearing aids :)

04-18-2010, 12:07 AM
Dee, yes when my sinuses are bad my hearing is bad and feels full. That is when I had to increase my predniosne from 5 mg to 10 mg. It made a huge difference. I rinse my nose twice a day, and somedays a little tiny blood. Now I am on 9mg prednisone.

04-18-2010, 01:53 AM
Also, Dee, WG can affect your ears separately from that, so you should get a baseline hearing test at some point. I had one in March and it found that I had a bit of congestion in one ear (which I could feel), that is likely related to WG. Not particularly bothersome, but now that there is an objective measure they can look at it every year to see whether or not it has gotten worse.

04-18-2010, 02:07 AM
thanks everyone will mention to ENT consult on fri i will put on list of things to ask
it makes for interesting conversations between us both when i cant hear too DEEx

04-24-2010, 09:31 AM
Dee, yes when my sinuses are bad my hearing is bad and feels full. That is when I had to increase my predniosne from 5 mg to 10 mg. It made a huge difference. I rinse my nose twice a day, and somedays a little tiny blood. Now I am on 9mg prednisone.

I too rinse twice a day and am on 10 mg of pred. the rinsing helps and if I miss I have problems. Just another thing to do in my day.

04-28-2010, 07:14 AM
My docs office just called me and said I have a sinus infection and would call down a prescription to the pharmacy. I went to pick it up and it was not covered, $70. The pharmacist said she would call my doc and see if anything else could be used that would be covered or less expensive and would call be back when she got an answer.

I had an x-ray on friday and it showed sinus infection. I also gave a sputum sample yesterday.

04-28-2010, 07:36 AM
Phil, did they determine you have an infection by the culture? Unless it's a raging infection, it's not likely to have grown anything yet. Since Wegs and infection look identical on x-ray, you might want to have culture confirmation of the infection before taking any antibiotic.

04-28-2010, 07:49 AM
That's a good point, Sangye...thanks for the tip. I wouldn't have thought of that.

04-28-2010, 08:14 AM
Phil, If any ENT looked at my maxillary sinus they would think massive infection. It will always look like a abnormal CT scan, because of the damage WG has done to it. Like Sangye stated the cultures take about 48 hours to grow. So I would wait on that.

04-29-2010, 12:32 PM
Too late. I have already started.

04-29-2010, 12:40 PM
Phil how are you feeling? Hope you feel better soon.

04-29-2010, 12:46 PM
Not that great. Low energy mostly with some headaches. No taste and smell yet either. Sore or tender inside of nose and sinuses as well sometimes.

04-29-2010, 09:30 PM
Just had a flare up in the nose/sinus and ENT recommended Neilmed Sinus rinse, in fact he gave me a load if it. It really does help, cleared out all the crusting and helps keep the sinus clear. I rinse 2 - 3 times a day and once used to it found it beneficial.

04-29-2010, 09:43 PM
Sorry to hear that Phil, your still on cytoxan? Here goes my "two cents", if your not feeling better in two more days...it is probably the WG. Hope you get to feeling better today!

04-29-2010, 11:29 PM
just spent seven days wearing oxygen mask on during last stay in hospital and i keep try to wipe nose with it on !! could not put ths nasal tube in because i have crusting just were it sat
gone back to douching with wash three times a day
i was taken off Nasonex because it was making no difference to the crusting etc'
missed ent appointmeny because of been in hospital too but have rearranged for 8th june although consult says they will not do repair of septrum just now because of all other problems i have at the moment
i cant smell anything most of the time i was hoping it would return at some point :)

04-30-2010, 12:23 AM
Dee, your smell will return once the medicines are decreased ( prednisone) and the wegeners is less active. I have severe sinus involvement. It is best to wait, so that the wegeners is less active. I kept having sinus surgery and then the wegeners would attack it again and again and again. I had four sinus surgeries less than 18 months.

04-30-2010, 01:05 AM
Phil-- I hate to sound like a broken record, but I think this is active Wegs. You haven't been right for months now and they keep saying "infection." That's usually a red flag for Wegs. Low energy is a red flag, too.

Dee- keep your chin up, girl. (Or "chins" if you're like me with the pred weight :D) I'm hoping you get your sense of smell back soon. I can't imagine how difficult it is to live without it for long periods.

04-30-2010, 12:45 PM
I think I have been in denial for quite some time Sangye. I think you are right.

I got my blood results today from the 12th of April.

My CRP was 26 - a little high. And my ESR was low at 8. My white cell count was 13 - a little high.

My ANCA on the other hand was not reported.

The report says:

ANCA Screeen IFA IgG - Positive
The previously reported value of NEGATIVE ANCA Screen Negative @ 1:20 - No further testing required for MPO or PR3 ANCA. was incorrect

I have never had a ANCA report come back like this before saying this.

My sputum report was in as well. It said:

Epithilial cells indicate the presence of bacteria which may
Specimen not representative of respiratory sercretions.
Specimen not cultured. Please repeat.

So it looks like that sample was a waste of time. What do you guys think? It looks like the first sentence was cut off.

I am feeling a little better today but the antibiotic might be draining me as well.

I will try and go in tomorrow for more blood work.

I have been suspecting a smoldering Wegs for the last few months. My ANCA has slowly climbed over the last few months from about 3 to 11. It was 11 in March.

I am not on Cytoxan, Elephant. I have been on Cellcept at 3000mg since February of 2009.

Thanks again all.

04-30-2010, 05:12 PM
Phil hope you feel better soon too . like you ive had a rough deal lately but as i kept telling the doctors on recent admision to hospital tell me what to do next no point worrying about the problem (blood clots in the lung) what to do about it my main concern
Sangye yes it was chins until last two weeks but from recent visits since i came home hosptial they thouhgt lost weight from face my problem is tummy looks like im pregant sometime !!

04-30-2010, 09:45 PM
Phil, sounds like from the specimen that it is Wegeners flaring. Phil sounds like the Cellcept 3000 mg a day is not doing its job. Your on the highest dose of Cellcept right now. You may need the big guns, "Ritux." The same one Sangye was on. OR possible another medicine like Imuran which is not a big gun. Its a chemo drug like methotrexate.

04-30-2010, 11:53 PM
I agree with Elephant. I've been observing something about Cellcept and I wonder if it's actually true. Many of us who've been on it do reasonably well (or great) for some time and then it seems to slowly stop working. I seem to recall several of us develop slow-brewing flares (as opposed to a sudden flare), making it difficult to tell if it's Wegs for months. Anyone else notice that with Cellcept?

05-01-2010, 12:46 AM
Phil, I hope you start feeling better soon or get something figured out that works for you.

05-01-2010, 01:31 AM
from someone who has had several meds changes in this last six months its worth looking into as i thought i was doing ok on mine until another flare appeared and a change of meds made a great deal of difference i f that makes sense . think its time for a nap!!!!!!!! talk to u later
hope things get better soon Phil

05-01-2010, 04:01 AM
I have been on Cellcept 2000 mg for 13 months, but also still taking cyclosporine ( immunosuppresant) 100 mg a day....was on 150 mg ( but the last two months reduced it to 100 mg) and prednisone 9 mg. This is a question I will as Carol Langford about in June, regarding the Cellcept issue. But I am doing ok.
About 15 months ago I took Imuran and that did not work, I had a reaction ( allergic). I even asked about methotrexate but they did not want me on that because of my kidney transplant. I was even asking about going on cytoxan...cause I knew I was not doing well. Well that is when my local Rhuemy called Carol Langford and asked what to do...then they had to call my Kidney doctor for his input because of my kidney transplant. You see, I am a difficult case.

05-04-2010, 11:39 AM
I agree with Elephant. I've been observing something about Cellcept and I wonder if it's actually true. Many of us who've been on it do reasonably well (or great) for some time and then it seems to slowly stop working. I seem to recall several of us develop slow-brewing flares (as opposed to a sudden flare), making it difficult to tell if it's Wegs for months. Anyone else notice that with Cellcept?

Your are right, Sangye. Cellcept was prescribed for a flare and I seemed to coast for awhile, but was also brewing worse trouble which gradually worsrened into a full blown flare. I then was prescribed Imuran, which did nothing for me - along with prednisone 20mg.

05-05-2010, 12:09 PM
I called my Rheumy late this afternoon and left a message for her to call me back. She usually calls in the evening or supper time so I should hear back from her sometime tomorrow.

07-27-2010, 03:26 PM
My new ENT, Dr. Mia, said in a recent e-mail to me that he is getting in some new honey nasal rinses that sound promissing for inflamation. I was wondering if anyone else on here has ever heard of a honey based nasal rinse?

07-27-2010, 10:37 PM
I would be anxious to know if that works. I am getting desperate!

07-28-2010, 12:11 AM
Honey is a natural antibacterial agent. After a pharmaceutical lab messes with it though, I'm skeptical that it has any healing properties left!

07-28-2010, 12:21 AM
Sangye what kind of brand or honey should I put in my sinus rinse ( Neil Med)?

07-28-2010, 12:44 AM
I have heard of people using Manuka Honey in nasal rinse, but I've never tried it myself.
I would have thought that any honey would work the same, but what do I know? ;)

07-28-2010, 12:47 AM
I've actually never heard of using honey in a nasal rinse, but that doesn't mean much!

In general, raw (unpasteurized) honey is the best form to use honey. Once you heat it via pasteurization, you kill all the beneficial enzymes. Ayurvedic medicine uses honey medicinally (in food, on wounds, etc...) but they advise you to never, ever heat it or it changes it into something harmful. Maybe a drop or two of raw honey in your neti pot?

07-28-2010, 12:54 AM
A quick Google for "honey nasal rinse" brings up quite a lot of info.

07-28-2010, 12:57 AM
Wow, yes it does! Cool-- which one of you is gonna be the first to stick honey up your nose? :D

07-28-2010, 01:07 AM
Looks like most of them say 1 tsp per neti pot. Much more than my measly one drop!

07-28-2010, 02:42 AM
I will try it out in a couple of days. Let you all know how it went. Probably will start smelling sweet! :)

07-28-2010, 02:51 AM
I will try it out in a couple of days. Let you all know how it went. Probably will start smelling sweet!

Might make you Bee have:)

07-28-2010, 07:26 AM
To those of you who use a neti pot, do you notice a difference between that and just the saline rinse? Right now I rinse 4 times a day with saline, and then use Flonase twice a day. My sinuses are swollen, painful with blood clots and crusting (where else on earth but here could you say that and NOT feel gross?). I have seen neti pots used on television and wondered about them? Any advice?

07-28-2010, 07:44 AM
I could not get enough flush with a neti pot and always used a 50ml syringe to flush around 1/2 pt of saline through my nose (up one side and down the other once clear). Within a few weeks of starting treatment for Wegs, most of my sinus / nose problems faded away. I just have a bit of a runny nose these days with the occasional slight bleed.

07-28-2010, 08:33 AM
thanks Jack... I wonder if I flushed it with the syringe like you said, the neti pot would be sufficient once I cleared out? I've never done the 'up one side and down the other'... is it uncomfortable?

07-28-2010, 08:39 AM
I do exactly what Jack does ," I use the bottle and use half on each nostril. Using those nasal sprays did no good for me, they increase dryness which caused more bleeding ...that was my case.
So Jack is the runny nose and little blood new or has this been going on forever?

07-28-2010, 03:53 PM
I use a Waterpik and a NielMed Squez Bottle to irrigate or wash out my nasal passages. I find the Waterpik the best because you can adjust the flow and it is gentle and pulsating. If anyone wants more info on nose stuff like irrigation and care of nose just let me know.

This honey stuff sounds interesting. Maybe I have started a honey revolution? Look out honey bees!

07-28-2010, 06:32 PM
My nose used to be a horrific mess and I underwent some fairly major surgery in the days before I was diagnosed (all unnecessary! :( ). This slowly cleared in the weeks after I started treatment for Wegs, but this was in the early days when treatment was very aggressive and needed to be because I was in poor shape. Since that time, I've had a runny nose similar to a mild cold and have to blow it a few times a day. Very occasionally this will result in a little bleeding that stops within seconds.

07-29-2010, 12:30 AM
Thanks Jack I needed that input. Mabey I'm not flaring after all.

07-29-2010, 01:10 AM
Elephant, you're not allowed to flare.

I use a neti pot twice a day, even though I don't have sinus involvement. I have mild (VERY mild compared to you guys) occasional nose stuff and Dr Seo said using the neti twice every day would help. Smart guy, it does. We've had several weeks of air quality alerts here and it helps keep that stuff from sitting in there. I wasn't able to use it the past few weeks because of the vertigo and my nose told me all about it.

07-29-2010, 05:57 AM
Thanks Sangye, I agree ....no flare for me. That bactrim is keeping me up at night, it always cause me insomnia when I take two pills a day. I the bactrim is working, I feel less congested and less sinus stuff. The problem is once I get of Bactrim( taking it twice a day) and go back to my usual ( every other day) I started to get more sinus crap! So frustrating!

07-29-2010, 06:33 AM
ive dropped preds and nose starting to play up again sinus painfull again going to give a few more days to see if things sort out nothings simple but trying to stay positive DEEx

07-29-2010, 06:34 AM
Elephant hope things ort out for u soon too DEEx

07-29-2010, 09:43 AM
Thanks Dee, I would say I am feeling a little better since taking he Bactrim twice a day, but I can't do this forever. I'm on too any medicines already!
Dee hope your sinuses get back to normal.

07-29-2010, 07:15 PM
Unless you are showing any side effects I don't see anything wrong with taking Bactrim every day. I've been doing this for as long as I care to remember and have not identified any problems with it.

07-29-2010, 11:35 PM
Elephant, maybe you've had a low-grade sinus infection lately. Either that or the Bactrim really does help with your Wegs. Or both. Or something else entirely! :D

07-30-2010, 12:35 AM
Elephant ive been taking Bactrim for over a year now and as far as i know will bee for the near future DEEx

07-30-2010, 01:02 AM
Watch out for fungal sinus infections if using a nasal steroid or nasal antibiotics, long term. The symptoms are similar to a bacterial sinus infection, and are easily opportunistic for those that are immunosuppresed. Daughter just had surgery to remove a 'fungal ball' from the maxillary sinus that her (now fired, local) ENT completely missed. Nasty little infection...

07-30-2010, 02:24 AM
I had a culture done close to my maxillary in June and it turned out to be a staph infection. So I was put on Bactrim two weeks and then I took ceftin for a week. Now I am on it for 10 days again.

07-30-2010, 02:32 AM
Bugger! That much antibiotic therapy is tough. Hope your tummy is OK...

Any improvement in the sinus after all that medication? Any CT scans?

07-30-2010, 02:40 AM
I have never had any side effects from Bactrim. It would seem that if you are not allergic to it then it is quite benign and it is quite usual for Wegener's patients to take it on a permanent basis. Studies have shown that it not only protects from some of the bothersome infections, but also reduces the rate of relapse. I've not found a description of the mechanism behind this effect so I can't explain it. Some "mild" cases of Wegener's are treated only with Bactrim and Pred.

07-30-2010, 04:08 AM
I totally agree with Jack. I have been taking Bactrim DS daily for 2 1/2 years. I no longer have the continuous sinus infections that I once had. I was told that I was taking it not only to prevent pneumonia carinii (spelling?) but to decrease the inflammatory response in upper resp. system. I have had absolutely no ill effects that I am aware of.

07-30-2010, 04:11 AM
That is what I was told too. I really need to get some doctors together and collaberate my care. So I will be working on this next week , will have to see.
Yes my sinuses have impoved.

07-30-2010, 06:43 AM
You see Dr. Langford, right Elephant? What does she think?

07-30-2010, 08:38 AM
I see Dr Langford, but have not gotten a hold of her cause she is at the conference in Long Beach. I wish I was there! Mabey next time. I will try Tuesday to get a hold of her. How are you feeling Phil?

07-30-2010, 09:25 AM
I am feeling not to bad. I find the PICC line very itchy. I wish we could all go to the Symposium.

07-30-2010, 10:01 AM
Glad to hear you are not feeling so bad. Is the tape causing the itch? Having any time of line in feels weird. How often do they have( Symposium) them? Yearly? If it is yearly, I will see about going next year.

07-30-2010, 10:23 AM
The Symposium is biennial.

07-30-2010, 10:41 AM
Thanks Phil, wonder will it be in 2012, I will start saving right now!

07-30-2010, 11:05 AM
Yes, lets start saving now. I wonder where it will be. I hope it is at the Mayo Clinic again. It was at Mayo in 2008 and Baltimore in 2004 I think. I forget where it was in 2006. Maybe Kansas City, MO.

07-30-2010, 11:58 AM
Let's have it in Baltimore! Then you can all come visit me! :D Save the date.

07-30-2010, 12:36 PM
If they build it I will come. :) So let's start putting our money away...little by little...

07-30-2010, 03:24 PM
If I had the energy and the money I would visit you all one by one. And then have a big party at my house and fly everyone in.

07-30-2010, 05:27 PM
Let's have it in Baltimore! Then you can all come visit me! :D Save the date.
Sounds like a party to me. Will your place hold us all?
I'll start working on designing a "Super Wegie" t-shirt so we can all recognize each other.

07-30-2010, 07:33 PM
If I had that kind of money I would have a place as bing as Buckingham Palace.

07-30-2010, 09:21 PM
Love to be Bill Gates for one week.

07-31-2010, 12:00 AM
Sounds like a party to me. Will your place hold us all?

LOL-- sure, I live in a little basement. If you can get in, you can stay. :D :D

07-31-2010, 03:23 AM
Saw my Pulmy this morning... lung function looks to be improving a bit ( but slowly), O2 levels was only 92% though... but it's soooo hot and humid here I'm really not surprised as the humidity always makes breathing tougher for me. He's concerned that the incisions from my lung surgery in mid-June aren't healed yet. Working to try and help them along. He also set me up with an ENT familiar with WG due to the sinus issues and a couple of dizzy spells (fell Saturday and had a close call Monday). The initial CT of the sinuses before diagnosis didn't show much, but he's concerned now because the issues haven't eased and are getting worse. Said it was time to add a good ENT to "our Team". See him next week.

07-31-2010, 03:54 AM
misskay - do you have a Vasculitis specialist in overall charge of your treatment. The idea of someone who is "familiar with Wegener's" being called in worries me. You need better than that.

07-31-2010, 03:57 AM
Hi Misskay, they need to do a cardiac work up on you. I had several dizzy spells and passed out, I was taken to the hospital twice and put on a cardiac floor. It is a sign of your WG acting up. That is what happened with me, but didn't know it until I was diagnosed. Check it out, do you have a Cardiologist?

07-31-2010, 04:18 AM
jack... right now, no I don't have a specialist 'in charge'. Not a possibility right now unless I want to travel and that just isn't possible right now for a lot of reasons. But so far I'm confident with the care I've been getting. I'd be dead right now if it weren't for my Pulmy. I feel like I have a good 'Team' that all communicate with each other. The right hand knows what the left hand is doing, and they all agree. I will trust them until I have reason not to. I know a lot of you think I can't possibly be getting good care if I'm not going to a big city and seeing a 'specialist', but please try not to think less of me because I haven't chosen that route (for now). Trust me when I say it isn't a possibility right now.

elephant, I do have a cardiologist. I have some underlying heart issues to begin with and have a call into him as I type this. No chest pain or anything (I have Mitral Valve Prolapse and have had 2 heart attacks previous). Think it has more to do with sinus and ears. Been having to turn the tv up louder lately, etc... think it may be fluid. Have also lost the sense of taste, which helps with the food cravings and I have only gained 1 pound in the last 2 weeks. Still not up to my pre-WG weight... but closing in on it. Large weight gain is one of my fears... vanity, maybe. I've always been naturally thin, and plan to stay that way if possible.

07-31-2010, 04:29 AM
I would not dream of judging you for not having a Wegener's specialist, we all have our own individual circumstances that we have to deal with. However, it it bound to concern anyone not familiar with your exact position due to the tricky nature of this disease. Hopefully, armed with information gathered, you will be in a position to ensure that the treatment you receive is effective and not putting you at risk.

07-31-2010, 06:53 AM
Most of us on here don't have Wegs Specialists.

07-31-2010, 07:24 AM
That might make an interesting Poll - I'll start one here - http://www.wegeners-granulomatosis.com/forum/hospitals-clinics-doctors-nurses/982-do-you-have-wegeners-specialist.html

07-31-2010, 10:19 AM
just reread my earlier post. I sounded a little defensive... didn't mean for it to come out that way. Hope I didn't offend anyone. I guess with all the talk about going to the big centers and dealing with WG specialists... had me thinking thats the route most of you has taken. Apologies where needed folks.

07-31-2010, 11:00 AM
Misskay, no apologies necessary. I understand if you can't get to a major center, but there is no reason in the world why you can't have a VF specialist consult for free with your docs. I just don't think you're getting proper care.

When I was with my original pulmy who dx'ed me and saved my life, I also thought it was great. Then things took a turn for the worse. Then when I was at Mayo AZ I thought it was great. If I hadn't moved to Maryland and found JHU, I would have limped along with very substandard care thinking it was just fine. I never would have survived last year's flare without a Wegs specialist. And in retrospect, my Wegs specialist can see that my original care was not proper-- I never should have been kept on ctx for 8 months, as it was too toxic to my bone marrow.

Please trust me. It costs you nothing but the time it takes to ask your rheumy.

07-31-2010, 11:45 AM
Misskay, you are fine. I waited over a year to see a Wegeners Specialist because I didn't know that there was such a specialist. Plus at the time I had two small children and could not bear thinking about driving far, far away to see a WG specialist. But when I had a wedge cut out of my lung, and symptoms were worsening, I knew I had to go. I called my mom who lives in Chicago and she flew down to watch my kids so that me and my husband could go to the Cleveland Clinic.
Just want the best for everyone on this forum. You guys are family!

07-31-2010, 11:51 PM
on the iPhone so keeping it brief. I am at the conference now. There is a huge reluctance even among people who would come to a conference like this to "abandon" the hometown rheumy who saved their life but the people here who are visiting the doc's who are speaking are just at a totally different level when talking about their docs and the care they receive. There are lots of horror stories here. Food for thought.

07-31-2010, 11:53 PM
Wow JanW, thanks for posting...can't wait to hear all about it.

08-01-2010, 12:47 AM
Me, too. Gosh, I wish we could all be there!

08-01-2010, 04:06 PM
I'll start a separate thread in a couple of days once I get ahold of my husband's laptop.

08-01-2010, 11:05 PM
Yahoo! Eager students waiting for the professor! Have a great day!

08-02-2010, 12:39 AM
I can't wait for class to begin. This is one of my electives. :D

08-02-2010, 06:32 AM
I already got my school supplies, lunch box ( all whole foods of course :) ), and back pack.

08-02-2010, 06:48 AM
Thank you in advance, Jan! There is so much we can learn through you, and I'm waiting as patiently as I can...[Did she post anything yet? I want to see a post! Now! Waaa!] Seriously, you are doing those of us on the forum a great deed to do this.

08-02-2010, 07:01 AM
we believe you elephant WHOLE MUFFINS WHOLE CHOCOLATE ETC DEEx :)

08-02-2010, 07:14 AM
whole foods are good for us.

08-04-2010, 11:36 PM
Well I called Dr Langford's office , she was out and will be back in today, but spoke with the doctor on call...very nice and asked me a bunch of questions. He wanted my to make an appointment with my local ENT to take a look up my nose and see if I am having a infection or is it inflamed ?sec WG?? Can't see the ENT till next week Tuesday.
The doctor covering for Dr Langford wanted me to call my local Rheumy and get labs to see if anything is reflecting a flare, so I called and my local rhuemy is out of town till wed, but I have an appointment with her on that day anyway.
My question is should I wait till next week to get labs or ask Dr Langford to fax them to my local Rhuemy? The one who is covering my local rhuemy said she didn't know what labs to order? That is what the nurse told me.

08-05-2010, 12:11 AM
I think you should get Dr Langford to fax the orders. That way you'll have the results by the time you see your ENT and your local rheumy.

08-05-2010, 01:10 AM
Thanks Sangye, I appreciate you input. Making the call right now. Just needed a little push. :)

08-05-2010, 01:21 AM
Sangye - I can't find that thread where you had said that Dr. Karina Keogh (my pulmonologist at Mayo in Rochester, MN) is not a wegs specialist. I called there last week because I am setting up my follow up appointment for Sept and I asked Dr. Keogh's secretary if Dr. Keogh was a Wegs specialist and she said yes. I also see an ENT there, (can't remember his name, I'll have to look it up) and she said he is also a Wegs specialist.
So, would it say on the Mayo Clinic webpage if the Doc is a specialist in Weg's? Or how would one know with out asking?

08-05-2010, 02:16 AM
I think this is really a moving target Brooke. It could be that she trained under Specks, who is the wegs pulmo there. It could be that she has 30 patients but he has 100. My sense from the conference is that these docs are training people all of the time who are qualified to see wegs patients. There is also an element of "raising your hand" that gets you on the VF list - the people most likely to do this are people looking to do major research on these disesases - they always need more patients.

I'd ask her if she consults on her cases with specks - if she does that would be good enough for me.

08-05-2010, 02:20 AM
Thanks so much Jan! I will ask her that at my next visit in September.

08-05-2010, 04:53 AM
Brooke -- also, this is particular to you and me and others who have had the saddle nose repair (I have not, yet). When Dr. Lebovics spoke he did say that relapse of the disease can ruin the repair and that there was nothing that could be done at the current time to stop a saddle nose from recurring in an active patient (which may be why he at least waits until you are 6 months chemo-free). I was not aware of this -- he has had patients collaspe again and has fixed them again. Obvviously, for many of us the deformity is so severe that we feel almost as though we have no choice in doing the fix, even if it may not hold.

09-16-2010, 03:41 PM
Here is a wierd one:

On Sept. 4 I had severe face pain like it was sinus pain. When the home care nurse came it that morning she could see that I was in horrible pain and so she called my doc on his cell phone. I talked to him and he said to try Tylenol 1s. I popped 3 that afternoon around 2pm and the pain subsided quite a bit but came back a bit more around 7 pm so I popped one more. The wierd thing is that around 4 or 5 pm the left side of my face went numb around my eye, nose, and lips. My upper left teeth and gums are even numb.

I talked about this with the ENT last Thursday and he said it is most likely sinus pressure in the left maxillary pressing against a nerve to cause this. I also mentioned this to my Wegs doc last Friday and he basically said the same thing.

I am wondering if anyone else has ever experienced anything like this whether you have had sinus or nose involvement or not. This is the first time I have had this feeling.

09-16-2010, 06:41 PM
By no means the same thing, but I can confirm that sinus involvement comes with a lot of pain in the face and behind the eyes. Also, since sinus surgery, my top teeth have been numb due to the nerve damage. It is not something I notice any more, but felt odd at the time.

09-16-2010, 09:13 PM
Phil, I had mostly left facial pain and tingling on my left cheek and up top of left hair line. I did have severe facial pain right before being diagnosed and that is what drove me to the doctors and demanded what is going on with me. That day I was diagnosed with WG.