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BookNut
06-03-2014, 12:58 PM
My illness has taken a downturn recently, as I whined about in my post http://www.wegeners-granulomatosis.com/forum/general-wg-chat/4018-feeling-discouraged.html

Well...today I thought it must all be messing with my brain. I have been REALLY sick for over a week now. Very SOB. When I saw my primary care, she asked me what my specialist diagnoses were. I told her the multitude of them, including COPD. She did some research and suggested I take Zythromax 3times a week, as it has been proven to reduce COPD exacerbations.

So today I went for my regular appointment with my pulmonologist. My pulmy said emphatically. "You do NOT have COPD. You have never smoked, and your lung function tests are normal. It is all sinus related.". i told him I had seen the diagnosis on some official paperwork from one of my doctors. I thought I must be going crazy.

As soon as I got home, I looked on my online chart for my primary doctor and my allergist. Nothing there. So, I went to the online chart of the pulmonologist. You guessed it....there it was. Big as life. COPD. I remember looking at it when it first appeared there, and feeling startled.....but a little relieved that at least I had a diagnosis. Now I guess I don't have that one after all. Glad to not have it of course.

I emailed him immediately to point out that the diagnosis is right there in my online chart. He said he would fix it. But, he made me feel a little stupid and like I was overreacting when I was in the office.

Just goes to show....you have to QUESTION EVERYTHING!!!

Alysia
06-04-2014, 01:56 AM
congrat for not having COPD. good news :thumbsup:

windchime
06-04-2014, 03:20 AM
Glad you don't have COPD Jacquie. Whew what a relief that must be. I've noticed that my pulmy puts things in my chart that he never talked to me about including different diagnoses. so it's important to read charts after visits with docs no matter how long you've been seeing them.

With all that being said I've never heard of sinus issues causing SOB. Do you know how they are related other than the stuff draining down into your lungs which would cause congestion, but not necessarily SOB.

Not to scare you Jacquie, but have they looked at your heart as a possible cause of the SOB. There are several different things that can cause it.

Again glad you don't have COPD and I hope the Zithromax works for you.

murmur
06-04-2014, 04:56 AM
Don't let him make you feel stupid! You have every right to question your own health. Doctors aren't always right. You are the best judgement of your own health.

BookNut
06-04-2014, 06:10 AM
Thanks everone!! Alysia, it is definitely a relief to not have COPD. I just wish i could put a stop to the endless rounds of infections which cause coughing and shortness of breath, and yet another round of prednisone. But you guys give me the encouragement to keep looking for a solution! And Cindy Windchime....I have a cardiologist. She says my heart is doing fine. I went to her because I have occasional heart palpitations. Next time I see her I will ask about the SOB. I think the situation is that the chronic sinusitis aggravates the asthma which then brings on the SOB when it all gets bad enough. Nd Murmur...Thanks for the encouraging word!!

annekat
06-04-2014, 08:15 AM
Cindy, I do get SOB from my sinus issues, the stuff collects in my windpipe, and it doesn't take very much to make me start to feel SOB until it can be coughed up, and then the feeling goes away. I've had asthma in my life before, and this can feel just like it until the stuff gets cleared out of there.

Jacquie, I'm glad you don't have COPD. It sounds more like Wegs sinus involvement affecting your breathing, but then I know you also don't have Wegs! So I'm not sure what your pulmy thinks he's doing for you if it's all sinus and not lung related and he says your breathing function is fine. And how can he say it is fine, when you are so SOB? Of course I do know you have some other diagnoses such as bronchiectasis, which I'd think would cause quite a bit of SOB. So why is he saying it's all sinus related, then? Sometimes I think doctors just speak in a bunch of riddles.

windchime
06-04-2014, 08:26 AM
Anne and Jacquie thanks for explaining the SOB and sinus thing. Couldn't figure it out on my own. Anne you bring up a good point regarding the PFT. Usually if you have asthma, as explained to me, it shows up on a PFT. Is this incorrect? Learning a lot here.

Jacquie so glad you have a cardiologist and all is ok, but a good idea to mention the SOB to them. Thanks for your patience and the explanations...:biggrin1:

BookNut
06-04-2014, 09:29 AM
I will tell you that I am REALLY confused. My allergist and PCP were the first to list asthma as a condition for me. But my allergist keeps referring it to as my "asthma-like" disease. She referred me to the pulmy and he is the one who diagnosed the bronciectasis. He also lists asthma and chronic sinusitis on my record. My oxygen levels are good...though they were a bit down at this appt. My PFT's are generally good, although it is a real struggle to perform the test....leaving me in a paroxysm of coughing. I ALWAYS have the windpipe obstruction that Anne describes. I mean always. 24/7/365. When I am doing well, regular breathing is not a problem. If I breathe deeply, anyone in the room can hear the rhonchorus sound that is always there to a degree. When I have one of my recurrent sinus infections, then the wheezing sound is audible with regular breathing. At that point, albuterol will help. But eventually it all devolves and the mucus that Anne describes seems to solidify, my cough becomes non-productive, and the SOB starts. This all used to happen 2-3 times per year. It has markedly worsened, with 6 downturns in the past 9 months. Since they generally last at least three weeks, that does not leave me a lot of good time. My research does tell me that it is very possible to have good oxygen levels and still be SOB....and often people in the situation are dismissed as having nothing wrong with them...mostly by nurses who don't understand. It is all very complicated. My ENT is very reluctant to do surgery. I think he finds the long term success rate to be unconvincing. I certainly don't want to have surgery, unless my doctor is enthusiastic about it.

I see the ENT on Friday. He will probably want me to go on pred and an antibiotic. I think I will ask to try just the antibiotic this time. I am not taking the antibiotic that my PCP prescribed because it was based on a COPD diagnosis. I also will be contacting my allergist about starting theophylline...and old time remedy for asthma that my husband has used successfully for decades.

I also had elevated white blood cells and some other markers that indicate a battle against infection, and an under-active immune system. So...maybe that is an area to look at. the numbers were only slightly out of the normal range.

Well....I did not mean to put your teeth to sleep,with all my health details. But I so appreciate hearing ideas from all over. I keep thinking there must be an answer somewhere. THANK YOU SO MUCH. I appreciate your ongoing concern and interest. Love you guys!!!

annekat
06-04-2014, 10:20 AM
Well, Cindy and Jacquie, I'm confused, too, about your issues and mine, and nothing my docs say ever seems to make me any less confused. I have never understood the PFT, and the only one I've gotten is very primitive looking, involving a cardboard tube like thing that I breathe in through and then blow out, at which point it is likely that I'll cough. I don't know if the ones you are getting are more sophisticated, but if they are supposed to measuring oxygen levels, as it sounds like you are saying, then I don't get why they would leave someone coughing and gasping for breath just because the measured oxygen level is OK. Maybe with true asthma it actually isn't. But what is true asthma? I was sent to this pulmy by my ENT, who thought I had asthma, even though I knew and told him that it was mucus caught around my vocal cords, at the time, all pre-WG dx. But it sounded like asthma to him. I had had asthma before and felt it could be partly that, as I guess the pulmy did too, and I was just kept on steroid inhalers and albuterol. Eventually the pulmy didn't think there was more he could do for me and "cut me loose". Well, then I went back to him later because I thought I had pneumonia, which turned out to be Wegs. He put me in the hospital overnight for a CT scan and other tests, suspecting some entirely different condition. The doc there suspected Wegs, which was confirmed by my ENT's biopsy while the pulmy was on vacation. When he got back, he still didn't believe I had Wegs, and thought my breathing seemed OK, at that moment while I was in his office, until I told him about the biopsy and he called the ENT to confirm it, as the results had just come in. Since my ENT doesn't treat Wegs, the pulmy has become my WG doc by default. So I'm getting the right meds, but otherwise, both he and the ENT say different things from one time to the next about what is going on in my sinuses or whatever.... it is just so frustrating, they are so rushed and have so little time to really talk about anything. So, I hope I didn't put YOUR teeth to sleep, just needed to vent, and your story about how hard it is to get real information about your condition got me going! We are all in this together even if we don't all have Wegs! Best of luck, Jacquie, in getting the infection whupped, and I hope things will improve greatly after that.

BookNut
06-04-2014, 10:33 AM
Anne...it all makes me wonder how anyone gets a correct diagnosis! The oxygen level I am referring to is from the little clip they put on the end of your finger. Mine is usually around 96, which is quite good. It was 93 the other day. Still ok. The PFT I referred to might be called a spirometry test. Not sure. It involves looking at a screen with pictures of lit candles. I am then instructed to breathe out deeply, then breathe in and blow into a tube to extinguish as many candles as possible. I usually manage to put most of them out, in spite of coughing like crazy afterwards.

P.S. It sure was a lucky thing your regular doctor went on vacation when he did!!

Debbie C
06-04-2014, 11:23 AM
To be honest I have read this and I have no idea what the h### is wrong with any of you ...just like the drs. !
Jacquie, it is good to know you don't have copd. I am told i do along with empasema (sp ?) I get sob breathe sometimes but he doesn't seem to be as bad as you are. I think the ent would be the one to handle it better since it sounds like your pulmy doesn't have a clue. Did he even apolagize to you for making the mistake about the copd. I'm sure not. Have you ever had a ct scan of the lungs to see if your have lung involvement. If you mentioned it before and I missed it ..sorry.Just trying to figure this out. The pft test I have done in the past are pretty simular,but once I was put in a glass enclosure and told when to take deep breathes and then breathe out as long and hard as I could ,then they gave me albuteral to inhale then repeated the tests after that I had to walk a fast as I could for I believe 5 mins. up and down the hall in the hosp being timed on how far I could go.My tests came back good. Do you live around alot of pollen? That could raise havek on your sinuses ?
I don't know..wish I could help. Hope you feel better soon and that the antibiotic you are going to try to get on helps. :hug2:

BookNut
06-04-2014, 11:52 AM
Hi Debra! Thanks for your reply. You guessed right. No apology from the pulmy...just a terse "I will take care of it". Oh well. Other than that, he has been very funny, thorough and gives me lots of time.

I had forgotten. I also did the glass enclosure thing and the walk around the hallway etc. It was back when I was just getting started, before I got this bad. I have had multiple CTs and xrays, which is where the bronchiectasis diagnosis came from. We ARE in a high pollen area, though my allergy testing showed an allergy to only grasses and goosefoot. BUT...the only good month I have had since September was October, which I spent in a dry area of California. I wish moving were an option...but financially and family-wise, that is not an option.

I will let everyone know what my ENT has to offer in this big mystery! You guys get me through this!!

annekat
06-04-2014, 11:58 AM
Yes, although I would have ended up at the ENT for a biopsy anyway, because I had just discovered my saddle nose, which was sort of a dead give-away that I had Wegs. I'm glad the jerk was gone and I could handle it in my own way. The ENT got me right in when he heard what was going on and stayed late that evening to do the biopsy. I'm wondering if the pulmy saw my saddle nose before I did and thought I was a druggie, because the condition he sent me to the hospital to check for was endocarditis, something that IV drug users get, and he had asked me right there in his office if I'd ever done that sort of thing. The answer was no. What a jerk. And he's still my WG doc by default until I find someone better.

BookNut
06-04-2014, 12:05 PM
OMG! UNbelievable!! Hope you find someone you like soon!

annekat
06-04-2014, 01:10 PM
Well, to give him a break, he didn't know me that well, and I'm only guessing about the saddle nose, as the people in the hospital didn't mention it either, and I don't know when it appeared. And he is a lung expert so does know about these things and only had a chest xray to go on, which didn't show much... in fact the radiologist hadn't seen anything and neither did he until he took a second look, and then I'm not sure what he saw, but he was right that the lung CT scan would show a lot more. As for the endocarditis, I assume it is something that not only IV users get, so can't assume he didn't believe me when I said I hadn't used IV drugs. But I do think it was crappy of him not to take the doc at the hospital seriously, who suspected Wegs. Part of why he doubted Wegs was that my ANCA reading was very low, and he didn't know that a Weggie can have a low or negative reading. I had already learned that on the forum and educated him. True, if I hadn't gotten a saddle nose and a swollen parotid gland, I wouldn't have gone to the ENT for a biopsy while he was gone, and he wouldn't have sent me for one, at least not right away. So what did he think those lesions on the CT scan were, anyway? I was sick, so I may be remembering it wrong. But anyway, you are right, it's a wonder we get diagnosed, and I do need a new doc. It's just that it's like shooting in the dark around here, knowing who there is locally who would be qualified to treat WG. But I do have some names to investigate and will keep asking around.

Alysia
06-04-2014, 07:22 PM
Hi Jacquie.
if you have Bronchiectasis please look at that list that wrote to Phil (he has that dx as well) on his thread. maybe you can find somthing useful. it is sure related to sob and infections.
my list is at the bottom of that page. (page 249)

http://www.wegeners-granulomatosis.com/forum/weggie-s-stories/889-update-pberggren-249.html

windchime
06-04-2014, 08:42 PM
There are different types of PFT's. The one you're talking about Jacquie, with the candles is measuring how much air you take in versus how much is getting back out. That's the spirometry test. Then there is a diffusion test where you inhale a little harmless gas that tells them how well your lungs move the air to your blood stream. The other one is a lung volume test that is done in a little sealed chamber that looks like a telephone booth. They regulate the air pressure to see what your lung volume is. These are the three that I've done in the past. I think the spirometry is the most widely done, but the other two are useful and tell them different things. I found this useful, it's from the Cleveland Clinic. http://www.ccjm.org/content/70/10/866.full.pdf

Jacquie instead of taking pred for several weeks(which I know you don't want to do) maybe try the pred dose pak that is only one week to just kick start the healing process. I would also try the theophylline as it certainly can't hurt. I use Theo Dur 24 which is a brand name. I only have to take two a day because it is extended release.

Anne I get that mess hung up around my vocal cords too. Doesn't want to move up or down. That's when i find the mucinex works well to thin it and gets it to move.

BookNut
06-05-2014, 06:43 AM
OK. Thanks Alysia, I have my evening reading all set!!

BookNut
06-05-2014, 06:55 AM
I've done the candles and the phone booth. Not the gas thing yet. I am interested in trying the thyopyline. I seemy allergist soon to discuss that. The full dose of pred usually takes a week or more to take effect. Don't know if the dose pak would work. Will ask on Friday when I see the ENT. Right now I am in the mood for firing both the pulmy and the ENT. My husband thinks they are just fine...but I am beginning to doubt that. I love my allergist...but then she is the one who referred me to these guys, so guess i shall perservere..

I will check out the link tonight. I have a lot of research to do. I called my ENT doc today about prednisone. The nurse said my problems sound more like I should be calling my pulmy. The pulmy told me the problem was all sinus, and I need to see the ENT. So, I don't have much hope of getting help till I actually go in to the ent for my regular appt this Friday. I insisted that the nurse tell the ent doctor...but I don,t trust her. It is 4:30 now and I have not heard back. The office staff there is not very good. I DO like the doctor when I eventually get to see him.

Thanks for all the good suggestions for me to research and think about.

renidrag
06-05-2014, 07:05 AM
I have had two PFT exams over the years. My last one in Feb. I think they were pleased to see some minor improvement, which I thought was impossible. Any way, I smoked cigarettes for almost 40 years and my chart says "never smoked". I left it that way.
Dale

BookNut
06-05-2014, 07:59 AM
Dale, So glad there was an improvement.....but it seems like you should have them fix your chart. Are you afraid if you do, you won't get as good care??

Dirty Don
06-05-2014, 08:06 AM
Yes Dale, you should have your chart fixed...has nothing to do with the care you receive as cigarette smoking has nothing to do with WG...BUT, always a but-t, er that would be me...anyway, if your lungs were affected by WG, a pulmy should be watching any problems that may occur on top of the smoking damage done. I have been doing PFTs quarterly till this year, have been reduced to semi annual now...cooool! If someone says your previous smoking habits are affecting your WG, they are very wrong...but previous damage can alter the course of care if it's bad enough. Best to you.

renidrag
06-05-2014, 08:38 AM
I do think it will affect future care. If any Doc asks if I smoked I am honest.
Dale

windchime
06-05-2014, 09:51 AM
Jacquie I don't know where you live, but if you are near or can travel to an academic center or somewhere like Mayo or Cleveland Clinic it might be worth it to get a second or third opinion on just what is going on. If you have to travel somewhere they will usually accommodate you with making your appointments on the same day. ie ENT and Pulmy. Just a thought. If you take all your current records you don't have to go through all the scans and blood work again. Makes the insurance company happy..........

BookNut
06-06-2014, 08:03 AM
Thanks Cindy, My ENT and Pulmy are both highly regarded in the University of Rochester Medical Center in Rochester, NY. My daughter lives near Cleveland...so that is a possibility in the future.

I am feeling somewhat encouraged today....even though I feel terrible. My lab results were posted. At the end of my pulmy appt two days he said. "hey, since you have been off pred for awhile, it would be a good idea to look closely at your igg tests and your immune markers for pneumonia, since you have had that vaccine in the last year.". The labs show an igg subclass 2 deficiency...and the immunity level of the pneumonia vaccine has basicallly dropped into the toilet. I go to the ENT tomorrow and will ask him about putting me on longterm antibiotics. The next step after that would be sinus surgery, or igg infusions once a month, both of which I would like to avoid. All i read about igg2 symptoms has me written all over it! So.....fingers crossed....we might be on the right track at last. I will update this tomorrow after my ENT appt.

BookNut
06-07-2014, 11:53 AM
Well...my ENT is downplaying the significance of the lowered igg2 result...but admits it is more my allergist's specialty. Still waiting to get input from the pulmy who ordered the tests. From there, I plan to discuss it all with my favorite doctor...my allergist. The ENT appt. went quite well otherwise. I had decided that I wanted to follow these standard treatments for igg deficiencies in this order:1. Long term antibiotic treatment. 2. Sinus surgery. 3. Long term prednisone or monthly IVG transfusions...which ever fits best and is the least disruptive. Guess what? Minus the IVG, that is EXACTLY the course of action the ENT recommended. Hopefully numbers 1 and 2 will be as far as I have to go. Fingers crossed!! If nothing else, the research has been fascinating. Such a surprise to read that from a librarian!! :rolleyes1:

pberggren1
06-07-2014, 09:39 PM
I sure don't like the sounds of the long term antibiotic treatment and the sinus surgery. Long term pred use is even not that nice. What exactly is being treated here? What exactly is IGG and is a deficiency of it something to be concerned about?

BookNut
06-08-2014, 04:04 AM
I sure don't like the sounds of the long term antibiotic treatment and the sinus surgery. Long term pred use is even not that nice. What exactly is being treated here? What exactly is IGG and is a deficiency of it something to be concerned about?

Phil,

You will be sorry you asked. Feel free to zone out. Writing this answer will help consolidate my thoughts on my recent research. Here goes...

The long term antibiotic treatment is something that is often prescribed for breathing and sinus problems. It is also often prescribed for COPD. My pulmy informs me emphatically that I do NOT have COPD, even though it was there in my online chart. BUT, he did say it might be helpful for my current problems. The ENT said the same. It is 500 mg tablets three times a week of Arithromycin to start with. After a period of time, we switch to a different antibiotic within that particular class of antibiotics. Macrolides...or something like that. They have been found to have anti-inflammatory properties that help in cases like mine. To me, this is the best choice, as the prednisone has already messed with my Immunoglobulin readings.

You might want to research immunoglobulins. Immunoglobulins are the properties that govern our immune system. I believe in WG, they are often OVER active, and often call for immunosuppressants. In my case, they would appear to be under active, and would call for immune boosters. There are categories of immunoglobulins. Off the top of my head, there is IgE, which governs allergic reactions. Then there is IgG, which deals with bacterial infections. There is also IgM, and IgA. Possibly more. Within each of these categories, there are sub-classes. IgG has 4 of them. I am low in IgG subclass 2.... which results in chronic sinusitis, bronchiectasis, asthma, bronchitis etc....every symptom I have, including constant dental problems. I am awaiting my pulmy to see his take on the results. Once I have his input, no matter what it is, I will talk to my allergist and INSIST that this be pursued. I have pulled together all my labs from different systems, and they show a consistent lowering of the IgG2 subclass over time. The treatments for it are the three that i listed in my last post. I like the first two options the best. I truly hope to avoid long term prednisone as I hate the side effects, especially of long term use. And blood infusions once a month at the doctors office, or weekly self administered subcutaneous infusions at home is certainly extremely unappealing!

Anyway...nothing is definite yet, except I will be starting the antibiotic soon. I am allergic to the dyes in the usual brands available in pharmacies, so my ENT is arranging to have it special made for me from a compounding pharmacy which will come to me in the mail.

Whew!! A good part of my research comes from this Medscape website. Medscape: Medscape Access (http://emedicine.medscape.com/article/136897-clinical)

In the immortal words of Bugs Bunny...."Thhaaaat's All Folks!"

pberggren1
06-08-2014, 05:18 PM
Thanks Jacquie, I will have to see what my IgG is at. I am fairly certain that the bronchiectasis is secondary to the Wegs and M. Abscessus though.

pberggren1
06-08-2014, 05:19 PM
What therapies have you tried so far for the bronchiectasis?

LisaT
06-08-2014, 11:42 PM
Jacquie, you are a good detective/researcher/librarian! I'm glad you're getting to the bottom of things... Slowly but surely. I'm also hopeful that the IGg issue could help Phil as it sounds as though some of the issues/infections are similar.

I'm curious, forgive me if I've missed this somewhere, how did they decide you don't have Wegs? I had it suggested and supposedly ruled out a number of times over a number of years before they found my stenosis and worse inflammation in my nose and throat and then decided that I do have it after all (according to the ENT. Everyone else is treating me for it but not coming right out and saying I have it, then referring to 'the Wegener's' as if it's been confirmed. (?!?) so I'm wondering what made them decide for certain that your issues are not caused at least in part by WG.

I don't know whether this will be helpful, but I have had all of those same pulmonary function tests over the years, and the spirometry was always a bit off (something about the inspiratory loop flattening, which if I understand correctly means that my inhalation was somewhat restricted). This was reported to be evidence of upper airway obstruction that nobody ever really explained... It was treated as mild asthma with salbutamol, which seemed to help when I had mucous stuck in my throat and trouble breathing. It wasn't until three or four years later that a new ENT found the subglottic stenosis, which must have been what the obstruction was all along. (Unless it was just one of the globs that got stuck).

sorry for the grossness but I guess with the mucous and globs it may help others to be specific/descriptive.... Yuck!:scared::scared: (Btw, the guaifenesin helps me wth that too.)

Alysia
06-09-2014, 01:00 AM
Phil,
The long term antibiotic treatment is something that is often prescribed for breathing and sinus problems. It is also often prescribed for COPD. My pulmy informs me emphatically that I do NOT have COPD, even though it was there in my online chart. BUT, he did say it might be helpful for my current problems. The ENT said the same. It is 500 mg tablets three times a week of Arithromycin to start with. After a period of time, we switch to a different antibiotic within that particular class of antibiotics. Macrolides...or something like that. They have been found to have anti-inflammatory properties that help in cases like mine.


Phil, do you hear her ?

BookNut
06-09-2014, 03:08 AM
What therapies have you tried so far for the bronchiectasis?

Yes...brochiectasis is lung damage that can be brought on my a number of "injuries", including those you mention and cystic fibrosis. The bronchiectasis that was revealed by a CT scan awhile back is very mild I am told. I take mostly asthma meds and allergy meds. The usual...zyrtek and singulair. Then I use Symbicort twice a day. I have albuterol in a nebulizer for asthma flares. Like right now I have to use it every three hours. Once the pred taper kicks in, I wil no longer need it. Although the wheezing never goes away, even with pred. I have tried budesonide in a nebulizer, but it seems to result in all the mucous drying up and plugging up the lungs and sinuses, and then I am really in trouble. I also started betamethasone in my twice a day sinus rinse. That did wonders....for awhile. And then it seemed to plug me up the way the budesonide does. I think I will try it again....but only about every three days and see if that works. I also have a flutter valve that I tend to forget, since I don't see that it helps. But my pulmy is alwyas nagging me to use it.

One thing that scared me in the article I read re IgG2 deficiency.....The article seemed to be directed to physicians, and it made a statment like this. I don't have the exact quote, but it was basically "Don't underestimate the possibility of death in patients with this deficiency." I suspect that the reason might be that it seems to take a long time to diagnose it.

pberggren1
06-09-2014, 03:19 AM
That last statement is a bit concerning for sure. I will have to ask my docs about the IgG. I use combivent maybe a couple times a day. It doesn't seem to help much at all. The only thing that seems to help is frequent nose irrigation and nebulizing saline.