Don't stop researching

[BookNut]

Research. Sometimes it seems like just reading the same things over and over...but sometimes. new avenue opens up. I just discovered that my asthma doc ( my favorite doc) does not have bronchiectasis listed as a diagnosis on my online chart. This made me think. The diagnosis came from my pulmonologist, whois in a different medical system. He told me about it almost as an aside....indicating it was mild and shouldn't cause me much trouble. I don't get a lot of help from him actually. He mostly treats people with end stage lung diseases, and I don't think he takes my issues very seriously.

Anyway...of course I researched the condition at the time...but the "mild" comment might have caused me to not pay as close attention as I should have. Well....the hospital giving me inhaled saline solution got me researching again. That is when I found out that saline inhalation is a common treatment for bronchiectasis. More detailed research revealed some very important things:

1. Non-Cystic Fibrosis Bronchiectasis (NCFB) results from a vicious cycle of increased mucus, which thickens and gets infected, causing shortness of breath and other exacerbations. This is exactly what has gone on with me for the last four years.

2. The damage is often caused gradually, by infections over many years. Let me see...I had bronchitis every Fall for at least 15 years.

3. One population that typically acquires bronchiectasis at a higher rate than other populations is .... wait for it.... women over 60 years old who have never smoked!! Gee...I came down with this nonsense 4 years ago when I was 63, and I have never smoked.

I am so looking forward to being off prednisone so i can tell if my new treatments are working and the improvement is not just the magic pred pills.

So far I have started some breathing exercises, increasing my use of my flutter valve, and am using my saline solution in my nebulizer. Fingers crossed!!

[me2]

Nice work. I look forward to your reality show "Booknut- The Patient Detective"

[annekat]

Nice work. I look forward to your reality show "Booknut- The Patient Detective" Yeah, Jacquie! It is too bad we have to be our own detectives when docs are too preoccupied, don't have the time, whatever... but it must be a great feeling to actually be gaining some understanding by doing so, and feeling like some conclusions may actually be reached! What you have uncovered so far is very interesting!

[drz]

Good work Jacquie (aka Lifelong Booknut). I have had bronchitis four years in a row around the Holidays after onset of cold weather. The increase mucous often just seems part of Wegs and creates coughing for many of us and often sinus infections. It sounds like this bronchiectasis is just another one of the myriad of problems for which we we share an increased risk. It is too bad though that we have to become knowledgeable about all these aspects to inform our treating physicians about what might be going on with us. But then when you hear hoof beats you don't think of zebras. Right?

[Debbie C]

Way to go Jacquie.Are you going to share your findings with your asthma dr ? It is nice to know that after all these years you have suffered with this that there is finally light at the end of the tunnel and hopefully once of pred you'll even feel much better.

We need to start a new thread " ASK JACQUIE !! "

[annekat]

We need to start a new thread " ASK JACQUIE !! " We knew there was more than one reason we need you to stay on the forum, WG or not!

[BookNut]

Yeah, Jacquie! It is too bad we have to be our own detectives when docs are too preoccupied, don't have the time, whatever... but it must be a great feeling to actually be gaining some understanding by doing so, and feeling like some conclusions may actually be reached! What you have uncovered so far is very interesting!

It sure does answer that nagging question - WHY did this come on so suddenly. Not sudden at all when you know what you are looking at! Not that there is a cure - but there are a few treatments I have not tried - and hopefully I can prevent it getting worse. Knowledge is power!

[BookNut]

Good work Jacquie (aka Lifelong Booknut). I have had bronchitis four years in a row around the Holidays after onset of cold weather. The increase mucous often just seems part of Wegs and creates coughing for many of us and often sinus infections. It sounds like this bronchiectasis is just another one of the myriad of problems for which we we share an increased risk. It is too bad though that we have to become knowledgeable about all these aspects to inform our treating physicians about what might be going on with us. But then when you hear hoof beats you don't think of zebras. Right?

Thanks dry! Have you had a recent CT scan? Might be worthwhile to see if this has developed. It used to be quite a common affliction prior to antibiotics. Now it is considered an "orphan" disease, although there has been an increase in interest the past few years. There are several non-medicine methods for keeping it from progressing - so it is well worth knowing about..."mild" or otherwise!

[BookNut]

Nice work. I look forward to your reality show "Booknut- The Patient Detective"

Thanks! In production as I type!:rolleyes1:

[BookNut]

Way to go Jacquie.Are you going to share your findings with your asthma dr ? It is nice to know that after all these years you have suffered with this that there is finally light at the end of the tunnel and hopefully once of pred you'll even feel much better.

We need to start a new thread " ASK JACQUIE !! "

Thanks Debra. It is good to keep those "Librarian-Spidey" skills sharp!! Those online medical charts certainly are a help for research detectives. I just wish that they would also contain CT results. I will have to ask about that. Maybe I am missing them somewhere.

Yes- I have already emailed my asthma doctor about my discovery. I told her I am very interested in hearing about natural and medical treatments for this - particularly if there is ANY way I can keep the mucus thinned down. My exacerbations are ALWAYS preceded by a thickening of mucus and a loss of my sense of smell. I sure want to prevent a worsening. 18 exacerbations, including 2 hospitalizations in 24 months is a bit extreme. Imagine if this was not a "mild" case of bronchiectasis!!

[BookNut]

We knew there was more than one reason we need you to stay on the forum, WG or not!

Yes - hopefully I can be of help to others!

[pwc51]

I went to the Vasculitis UK Patient Symposium in London yesterday. A full on day with 18 world experts presenting. One of the presenters was Dr Peter Merkel from the US who gave an overview of the research going on. He listed many many items and stressed that there has never been more Vasculitis research going on than today!! It seems there are potentially some interesting new drugs in the pipeline. When the slide decks are published I will see if I can get some of the relevant data to this site. What surprised me was the fact that in some cases the drug companies are now 'sponsoring' some of the research - exciting times!

[BookNut]

I went to the Vasculitis UK Patient Symposium in London yesterday. A full on day with 18 world experts presenting. One of the presenters was Dr Peter Merkel from the US who gave an overview of the research going on. He listed many many items and stressed that there has never been more Vasculitis research going on than today!! It seems there are potentially some interesting new drugs in the pipeline. When the slide decks are published I will see if I can get some of the relevant data to this site. What surprised me was the fact that in some cases the drug companies are now 'sponsoring' some of the research - exciting times!

That would be great information to share so folks can follow new treatments as they are developed. People just had to cope as best they could prior to the internet...especially if they lived far away from large public and academic libraries. What is available now is a librarian's dream. When I was in library school in 1970...they trained us well to send in cataloging info on every book we purchased because "some day" we would be able to search every library in the world. We were also taught how to enter information on research topics into rudimentary computers via punch cards.It is so gratifying to me to see that sci-fi fantasy become a reality!

But it is not simply the access to raw data that we have now...it is the ability to communicate with other folk having similar issues. I am sure this forum encourages people to try new treatments with the best possible combination of information....from their doctors, from websites, and from real life Weggies!

[Debbie C]

Jacquie,you can get a copy of the cd of anything you have done at a hosp.or other facility. I can never get the cd to open on my computer so I get a copy of the report thru the medical records dept. I have the cd's and reports of everything I have had done. I thought it would be good in case I ever move.

[BookNut]

Jacquie,you can get a copy of the cd of anything you have done at a hosp.or other facility. I can never get the cd to open on my computer so I get a copy of the report thru the medical records dept. I have the cd's and reports of everything I have had done. I thought it would be good in case I ever move.
I have the reports....somewhere. Gotta dig them out. Had a hurried clean up in prep for our baby granddaughter's visit. Now we are trying to find things again. I wish they were online because at least they would not get lost there!!

[Pete]

I believe this is the study Dr Villa Forte referenced during my discussion with her about getting off mtx last week: Granulomatosis with polyangiitis (Wegener's): impact of maintenance therapy duration. - PubMed - NCBI (http://www.ncbi.nlm.nih.gov/pubmed/24646464)

[Alysia]

Hi Jacquie,
bronchiactesis was also in the list of Phil's diagnosis. I copy to here what he wrote about it after a meeting with his then new lung doc (post from April 1) in here: http://www.wegeners-granulomatosis.com/forum/weggie-s-stories/889-update-pberggren-239.html

First off he is not convinced that the scar tissue in the bronchi is the main thing causing my shortness of breath. He says I have a condition called bronchiectasis which makes it difficult to clear all the mucus out of the lungs. He will get me to see a respiratory therapist to help learn how to clear these out. I also have a device that I used for a while when the M. Abscessus was being treated called a flutter valve. It is plastic thing with a metal ball bearing in it that you breath into and it vibrates and thus vibrates the airways to loosen up the mucus so it comes up easier. I didn't have much success with it back then but he urged me to try it again so I will. He said this is about the only thing that can treat this bronchiectasis besides antibiotics for the frequent lung infections one would get. He said it is a vicious cycle that usually only gets worse. I am hoping this respiratory therapy and flutter valve will help with that.

feels so warm to read Phil's posts...

on the next page you can see links that I posted to my sweetie then:

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

and here:

http://www.wegeners-granulomatosis.com/forum/weggie-s-stories/889-update-pberggren-254.html

I am not sure that I posted the links correctly, so you can find those on his thread on pages 249 and then 254. the link to his thread seems ok.

[annekat]

Great, Alysia... I knew Phil had had this condition, and was hoping you'd find his posting on it. This also shows how valuable Jacquie is on here even though she doesn't have Wegs; any of us can get this, too, and her bringing it up makes us more aware and leads us back to Phil and his experience. I sometimes wonder if I could have this, because I spend a lot of time trying to cough stuff up. But I don't think I've had any lung infections, which I think Jacquie mentioned as a cause, and I know Phil did, so maybe there is no connection to my case. But it is all excellent information to have, since we don't know what will happen later, and we should all be familiar with the terminology, causes, and treatments. It sounds like the flutter valve might even help someone like me who has a less serious but still troubling condition of needing to loosen things up in there. I think my problem is currently worse because of seasonal allergies causing more mucus and asthma, as it tends to clear up when the pollen levels drop.

[annekat]

I believe this is the study Dr Villa Forte referenced during my discussion with her about getting off mtx last week: Granulomatosis with polyangiitis (Wegener's): impact of maintenance therapy duration. - PubMed - NCBI (http://www.ncbi.nlm.nih.gov/pubmed/24646464) This is great, Pete, and applies to me, because I take MTX, and wouldn't mind staying on in indefinitely for this reason as long as no problems with my liver are shown in my blood tests. I wonder if you meant to post it here, though, as I know you were talking about it in another thread.

[Pete]

This is great, Pete, and applies to me, because I take MTX, and wouldn't mind staying on in indefinitely for this reason as long as no problems with my liver are shown in my blood tests. I wonder if you meant to post it here, though, as I know you were talking about it in another thread.

Hi Anne,

Yes, I meant to post here as this thread seems to have the focus on research. Dropped 0.5 mg/day of pred yesterday. Will stay at 2.5 mg for a month. If no issues, I'll drop to 2.0 and see how I do...

[annekat]

Hi Anne,

Yes, I meant to post here as this thread seems to have the focus on research. Dropped 0.5 mg/day of pred yesterday. Will stay at 2.5 mg for a month. If no issues, I'll drop to 2.0 and see how I do... Makes sense, Pete... So far I'm just focusing on the pred, too, but have a ways to go to keep up with you! The doc once mentioned cutting back on the MTX but hasn't for a long time. I'd be better off changing docs than going along with that, I think, since I'm at 15mg. and I trust you are right that it is considered the minimum effective dose.

[pwc51]

On my consultant's insistence, and despite my protestations, I am dropping from 5mg pred to zero in 2 weeks! So far it has not been as bad as I expected - I did have to stop for a couple of days early on but then picked up again so I think it will nearer 3 weeks before I am off it! I hope it sticks ....!

[drz]

On my consultant's insistence, and despite my protestations, I am dropping from 5mg pred to zero in 2 weeks! So far it has not been as bad as I expected - I did have to stop for a couple of days early on but then picked up again so I think it will nearer 3 weeks before I am off it! I hope it sticks ....!

Sounds like a quick drop. Hope it goes well for you. Might be rough for a few days i guess?

My Weg experts choose to keep me on 5 mg since they said that dosage shouldn't do much harm and it may help prevent relapse or make them milder.

[pwc51]

Thank you drz - had wanted to follow your example for the same reasons but was overruled! At the Vasculitis Symposium that past weekend the consensus was that the jury is currently out as to whether low dose pred is better than zero pred, or not. The research continues!

[drz]

Thank you drz - had wanted to follow your example for the same reasons but was overruled! At the Vasculitis Symposium that past weekend the consensus was that the jury is currently out as to whether low dose pred is better than zero pred, or not. The research continues!

I am also on 175 mg of AZA but my doctors keep saying since you are doing so well after your miraculous survival and recovery, lets not change anything yet. I agree too since they have also told me they doubt i would survive a serious flare with symptoms like I had when first diagnosed because of the damage to my lungs and kidneys I got during my initial treatment.

The research seems pretty clear that most people (80%) relapse within a couple years once they stop taking their maintenance drugs. For me those odds are too risky. I would consider the pred as part of the maintenance drugs but I know there is more research going on and maybe the pred isn't the important part. If they find out it isn't important to prevent relapse i would be willing to give it up if the Mayo Clinic recommends it.

[Alysia]

Great, Alysia... I knew Phil had had this condition, and was hoping you'd find his posting on it. This also shows how valuable Jacquie is on here even though she doesn't have Wegs; any of us can get this, too, and her bringing it up makes us more aware and leads us back to Phil and his experience. I sometimes wonder if I could have this, because I spend a lot of time trying to cough stuff up. But I don't think I've had any lung infections, which I think Jacquie mentioned as a cause, and I know Phil did, so maybe there is no connection to my case. But it is all excellent information to have, since we don't know what will happen later, and we should all be familiar with the terminology, causes, and treatments. It sounds like the flutter valve might even help someone like me who has a less serious but still troubling condition of needing to loosen things up in there. I think my problem is currently worse because of seasonal allergies causing more mucus and asthma, as it tends to clear up when the pollen levels drop.

Thanks Anne. I hope that you don't have Bronchiactesis and I think that you don't have it.
having it means a great daily effort to clean the airways. lots of coughing. lots of mucous (green, yellow, sometimes bloody), shortness of breath. Phil was also vommitting because of the coughing. another symptom of Bronchiacthesis is lost of weight. he became so skinny (although handsome) in his last months.
as for the flutter valve and another device that he got in the respiratory therapy that we went to on Thursday before the Sunday of his going to the ER: the therapist gave him acapela device. after he used it on Sunday morning, he got the sharp pain in the chest and asked me to take him to the hospital.
we asked many times but didn't get clear answer if the acapela device was responsible for the collapsed lung. the lung was already collapsing a bit before that day but we wondered if the device caused it to collapse more. those devices are working by inflating the lungs. I seriously think that there might be a risk using those devices and if you ask me I would suggest to use them carefully if ever. maybe to use them only after your lungs are being checked carefully to see that no harm can be caused by them. to see that the lung can endure that effort. it is an effort. Phil's lungs were too sick for that. the therapist made fatal mistake by giving it to him without checking enough. maybe because that he didn't look sick....

bottom line: my opinion, from what I went through with my Phil: don't use flater valve or acapella device or devices like that, without checking that your lungs are strong enough to endure the inflating, the pressure made on them.

[Alysia]

On my consultant's insistence, and despite my protestations, I am dropping from 5mg pred to zero in 2 weeks! So far it has not been as bad as I expected - I did have to stop for a couple of days early on but then picked up again so I think it will nearer 3 weeks before I am off it! I hope it sticks ....!

sounds dangerous to me. too fast for sure.
I believe that Phil's new wg doc did fatal mistake when she told him just like that to be off pred. I think that he was smoldering without pred.
smoldering is not less dangerous then flaring. even more sometimes because it is hard to detect and it can cause damages, serious enough. my smoldering made my saddle nose. I think that Phil's smoldering made holes in his lungs.
you can still argue with your doc. YOU are your best doc at the end of the day. good luck and update us how it goes.

[annekat]

Great advice, Alysia, thanks! I think you are right that I don't have bronchiectasis at this point, and maybe I never will. I do think that my doc, a pulmonologist, doesn't take my issues seriously enough because they usually don't happen that much in his office and my breathing function tests come out OK even though I always cough on the exhale. And he doesn't think I can have asthma or other allergy issues because of the meds I'm taking for Wegs, which should suppress it, according to him. My breathing and coughing issues get worse at night, or later in the day, and a few nights ago, I had a really hard time and nothing I coughed up was enough to give relief. At the same time, I had a fever and a swollen lymph gland on one side, which would indicate an infection or Wegs flare, and not asthma. So I took some extra pred, got extra rest, and drank lots of fluids the next day and everything calmed down. Now my coughs are productive again, there's no fever, the lymph swelling went down. If I still had those problems to that extent, I would see the doc. I only know, besides the brief signs of infection, that the pollen counts in my area were extra high that day and I'd gone into town that evening for a meeting, where more of the currently offending trees are, and the problems started when I got home. So there is an element of mystery about it and it could be a combination of things, I guess. Thanks again for your input, and I won't go out of my way to get a flutter valve unless some doc thinks I should try it and my lungs are strong enough. Right now, I don't feel the need. BTW, pollen counts are very low here today.... I didn't even get an email about them from www.pollen.com (http://www.pollen.com), which I only do if they are medium to high.

[Alysia]

Great advice, Alysia, thanks! I think you are right that I don't have bronchiectasis at this point, and maybe I never will. I do think that my doc, a pulmonologist, doesn't take my issues seriously enough because they usually don't happen that much in his office and my breathing function tests come out OK even though I always cough on the exhale. And he doesn't think I can have asthma or other allergy issues because of the meds I'm taking for Wegs, which should suppress it, according to him. My breathing and coughing issues get worse at night, or later in the day, and a few nights ago, I had a really hard time and nothing I coughed up was enough to give relief. At the same time, I had a fever and a swollen lymph gland on one side, which would indicate an infection or Wegs flare, and not asthma. So I took some extra pred, got extra rest, and drank lots of fluids the next day and everything calmed down. Now my coughs are productive again, there's no fever, the lymph swelling went down. If I still had those problems to that extent, I would see the doc. I only know, besides the brief signs of infection, that the pollen counts in my area were extra high that day and I'd gone into town that evening for a meeting, where more of the currently offending trees are, and the problems started when I got home. So there is an element of mystery about it and it could be a combination of things, I guess. Thanks again for your input, and I won't go out of my way to get a flutter valve unless some doc thinks I should try it and my lungs are strong enough. Right now, I don't feel the need. BTW, pollen counts are very low here today.... I didn't even get an email about them from www.pollen.com (http://www.pollen.com), which I only do if they are medium to high.

Thanks God you are feeling better Anne. you only tell us AFTER and not during.... I wish I could live near, I would come to take care of you...
please update us how you are doing. I hope that whatever it was, it is over.
sending lots of love and hugs to you. take care.

[annekat]

Thanks God you are feeling better Anne. you only tell us AFTER and not during.... I wish I could live near, I would come to take care of you...
please update us how you are doing. I hope that whatever it was, it is over.
sending lots of love and hugs to you. take care. Thanks, Alysia. I'm keeping an eye on it. It happened so quick and was over so quick, it was weird. Not food poisoning or anything like that, because there were no stomach issues. I'm pretty much back to normal but could still be smoldering if it was a flare, so am keeping the pred level up a bit. My doc gave me permission to do that. BTW, I was wrong about the pollen counts, they are high today, but the weather is cloudy and a little damp, which will help. Mulberry trees are the worst offenders here currently, and they are mostly in town and not in my neighborhood. I see from the pollen site I referenced above that pollen levels are high all over the US right now, which is not too surprising. They say tomorrow the levels here will be much lower. Anyway, thanks again for your good thoughts and advice. I, too, wish we lived near each other.... that would be so cool.

[BookNut]

Great advice, Alysia, thanks! I think you are right that I don't have bronchiectasis at this point, and maybe I never will. .

Anne & Alysia - my emails letting me know of updates have been very slow lately - so I missed this whole conversation. The only way anyone can know for sure if they have bronchiectasis is via CT Scan. It is the only thing that has shown up in my CT scans - other than indications of lung infections. Why no one has focused on it is a mystery to me. These oversights make forums like this invaluable. Now that I have done the research, I feel as if I have some tools that will help me out - and perhaps get me off the prednisone merry-go-round.

I am very sorry to hear that you have been ill Anne. As Alysia says - we never hear about these things till you get better! Hope your breathing is back to normal. I can certainly emphasize with your feeling regarding your pulmonologist.

Somewhere in this thread someone mentioned that a doctor said there was not much that can be done about bronchiectasis. I think that is quite wrong. If one has a mild case - there is quite a bit that can help keep it from getting worse. I feel like I can actually do something that will work. I know doctors and many others are skeptical about herbals. However - the Sinotrol I am using is very effective. It is made up from many herbs - but the primary ingredient is an amino acid called n-acetylcysteine that is used frequently in the medical world to thin the mucous. What I am taking is a pill and is OTC. However, it is available in stronger versions with a prescription as an inhaled powder and also an inhaled neb solution. The whole condition is driven by mucus - so it is imperative to keep it out of the lungs. It all makes so much sense to me now. I HAVE tried Mucinex in the past, which is supposed to be a mucus thinner - but it worked the opposite for me. It solidified the mucus and was the beginning of the down hill slide. That and losing my sense of smell were inevitable signs that things were going to get bad.

I was given a flutter valve, Alysia when I was first diagnosed with mild bronchiectasis. Seemed like a lot of work without much payback. I am changing my ways now. I can certainly see where it would not be a wise choice for someone like Phil, on the verge of a lung collapse. But for milder cases, it can be helpful. For more advanced cases there are also percussion vests. Maybe someday that will help me. Right now I am changing my whole routine. No more inhaled neb meds, unless I feel short of breath. Instead - plain saline solution to keep the mucus loose and help me cough it up. It really works for me. So - I do my saline, take my symbicort, do some breathing exercises that I learned in yoga, then do my flutter valve. Next I measure my peak flow. Prior to this new routine, I never was able to get above 250. That was the best ever, when I was feeling the best ever. 90% of the time, my measurements were in the "critical" level. Now I have reached 300. wooHooo!! This puts me just a small bit outside of the "well" category for my age and height.

Non-Cystic Fibrosis Bronchiectasis is a disease that was thought to have been conquered by antibiotics. The medical world is discovering that it is still with us. It is now considered an "orphan" disease with only 100,000 people with the diagnosis in the United States. I suspect there are more who, like me, have asthma like symptoms that are not well controlled by standard asthma drugs. it is always interesting to compare symptoms with my husband. He has had "traditional", but severe asthma for decades. We take completely different meds because we react so differently.

Thanks Alysia for posting the info on bronchiectasis from Phil. It is very helpful to hear all this. And I think it is good for all WEggies to know about and watch out for. Again - a CT is the only way to diagnose it.

Thanks again folks for all the postings. It is so good to see everyone researching and posting. The thing with medicine is there IS no such thing as "one size fits all" medicine. And there should never be patients that accept everything their doctors say as gospel!

[annekat]

Thanks, Jacquie, for your knowledge and insights, and for getting us back on the track of your original point to this thread. It is such a complicated issue, and doctors don't seem to have the patience or time to get into the nitty-gritty of anything until it becomes worse than it would have gotten with some preventative measures.

I have heard of that n-acetylcysteine you are trying, and of some other things for thinning the mucus. Some of these were in a book of alternative treatments I've had for years. Mucinex pills never worked for me as well as the liquid guaifenesin, but it doesn't work for everyone and didn't work for Phil, nor is it working as well for me as it did last year. So I'll look into some of these things. I have no problems with herbs unless they boost our broken immune systems. I am careful about all this stuff and usually think about things for awhile and research them before I try them.

I feel a lot better but am still a bit more easily fatigued than before and get out of breath. But if I take it easy, I can breathe just fine. I'm not even using anything today except a little extra pred. When things got bad with the breathing, the steroid inhaler wasn't working; I didn't feel I could get enough of it into the airway. I'm not using it now because I'm not sure when I can get more. I find that inhaling steam with herbs like mint and ginger in it will help a lot. Most days I don't feel the need to do that, but I did it a couple of times that one night when things got bad. I've added salt occasionally and wonder if that would help, if the dissolved salt would be present in the steam. I would like to try the saline in a nebulizer, as that is sounding quite promising for you. Just have to find a doc to prescribe the neb for me, and see what the cost will be with Medicare. I think my PA might be the most open to that at this point and I'm due for an appointment with her anyway.

Also will keep in mind mentioning bronchiectasis and the CT scan to some of my docs. The pulmy may just brush me off. I'm beginning to think he'll pooh-pooh anything I think of myself and maybe I should just tell him I plain can't breathe sometimes and let him come to the same conclusions on his own. Maybe the PA is familiar with it, and she has much better beside manner and willingness to spend time. Trouble is she knows nothing about Wegs and will not get involved in treating it. But we don't know that it is purely a Wegs issue, and she has helped me with asthma before.

So many ideas, so little time! Thanks again.

[BookNut]

Thanks, Jacquie, for your knowledge and insights, and for getting us back on the track of your original point to this thread....
I have heard of that n-acetylcysteine you are trying, and of some other things for thinning the mucus.... I am careful about all this stuff and usually think about things for awhile and research them before I try them.

I feel a lot better but am still a bit more easily fatigued than before and get out of breath. But if I take it easy, I can breathe just fine. ....

Also will keep in mind mentioning bronchiectasis and the CT scan to some of my docs. ....Trouble is she knows nothing about Wegs and will not get involved in treating it. But we don't know that it is purely a Wegs issue, and she has helped me with asthma before.

So many ideas, so little time! Thanks again.

Not thinking of getting the discussion back on track at all. I think it is great that people are looking at the research end of things. It is a constant learning experience. And WE are the ones who are experts on how we feel - not the docs. I do think pulmys tend to dismiss what they see as "mild" cases as opposed to the more serious cases such as Phil's that they encounter. The thing is - they SHOULD be jumping at the chance of PREVENTING mild cases from progressing. That pretty much describes the difference between standard western medicine and integrated medicine which incorporates natural healing and also techniques that work on building up the body's ability to heal itself. Which becomes very complicated in the case of over-active immune systems, which certainly don't need any help getting more aggressive. That would be a very complex issue. I have an appt with my PCP who is an integrated medicine doctor. I will ask her what she does for folks with over active immune systems.

Do you have a PCP - and do they pretty much ignore the Wegeners??

Inhaling things like mint and ginger sound good. Right now my hubby is sleeping in his recliner at night so he can use his nebulizer as needed....so I have the bedroom to myself. I might just drop some peppermint oil in my vaporizer and see what that does for me. Bob is so scared of asthma triggers that he freaks out if he can smell ANYTHING. Though he is more relazed if it smells like food! :-)

ANYWAY - ON WITH RESEARCH OF ANY KIND. If nothing else, it keeps the wheels in our heads from getting rusty!

[drz]

Thanks God you are feeling better Anne. you only tell us AFTER and not during.... I wish I could live near, I would come to take care of you...
please update us how you are doing. I hope that whatever it was, it is over.
sending lots of love and hugs to you. take care.

Who is taking care of YOU now? Are you still doing OK with the Wegs stuff?
We love you too!

[annekat]

Do you have a PCP - and do they pretty much ignore the Wegeners??

The PA I mentioned before is my PCP. When I got her, I was on a state sponsored health plan for low income, and had to switch to her because not many GP docs were taking patients under that plan, due to low reimbursement rates. I had a doc I liked, but his group decided to discontinue us. Maybe I should see now if he will take me on Medicare. He was an exception to most of our complaints about docs. Anyway, the PA does not exactly ignore Wegener's, but she feels inadequate to deal with it. She has another patient with WG who is also being treated by a pulmonologist, a different one, and she offered to refer me to this doc, because she doesn't personally like the pulmy I see and is sympathetic to my complaints. But I told her what I need is a rheumatologist, and she had no recommendations there and said her other patient had been told by a rheumy that he couldn't help him. At least that rheumy knew his limitations, but I had to explain that there are some rheumies with a fair amount of WG or vasculitis experience and that rheumies are whom we should see for overall management of our treatment. The PA works in an office with a doc, whom I guess she'd consult with if necessary, and once I saw a nurse practitioner there. The PA can prescribe meds, does breast and pelvic exams and other routine check-up things, and refers me for mammograms or anything else, has ordered x-rays, stuff like that. But you are right that I probably need a real doc for a PCP, and should look into that. The one I had before, I'm sure would not ignore Wegener's.

[Jayne 14]

I'm glad your feeling better Annekat , but flip me if you struggle to breathe can't you get a sabutemol inhaler to use when your bad ??
This disease is so complicated , research of any kind helps


Sent from my iPad using Tapatalk

[BookNut]

Anne, I too wonder about a nebulizer for you. The one I have is not horribly expensive, and I suspect that medicare will cover 80% of it. I just did a quick search and the one I use is on sale for around $35. Here is the link.

Direct Home Medical: InnoSpire Essence Compressor Machine Kit with Disposable & Reusable SideStream Nebulizers (http://www.directhomemedical.com/innospire-essence-compressor-nebulizer-respironics.html?fe_feedid=119&fe_code=innospire-essence-compressor-nebulizer-respironics&utm_source=googlebase&utm_medium=CSE&utm_campaign=feedexact&gclid=CjwKEAjwsOKpBRCDtfOnzaDg3HsSJAAJ2ojiC3fgYvFG OccJhtMiSxc8b5pZ2OfwsrejEHbLOw9dBxoCUR_w_wcB#.VTls q9q9KSM)

There are a number of inhalation meds. The one called DuoNeb is probably the most universally effective.

It would be nice to know that you had something more than a rescue inhaler. The nebulized medicine is just better at getting down into your lungs.

The long link I pasted is doing weird things to this form. Hopefully it comes through.

[annekat]

Jayne and Jacquie, thanks for all your suggestions. I just looked up salbutamol and it is the same as albuterol, a commonly prescribed "rescue inhaler" which I have used many times, though not lately. It is designed for helping when in the middle of an asthma attack, and can easily be overused and cause problems. But still, I should have one on hand. My preferred commonly used inhaler is a steroid inhaler such as Flovent (fluticasone). I want to clarify, Jacquie, that these steroid inhalers are NOT considered "rescue" inhalers, as they are not designed to work in the middle of an attack. They are supposed to be used preventatively on a regular basis, before you have severe symptoms. That's why mine didn't work the other night; I was already in the middle of an attack, but I tried to use it anyway just to prevent later problems. If I'd had the albuterol, I would have used it. I didn't have it because I haven't had these problems in a long time, to this degree, and my prescription for it had long run out. Normally, the steroid inhaler used as a preventative will keep me from needing the albuterol at all. This time I'd stopped using the steroid before the problems started; I don't have a lot of it left and need new prescriptions for both of them. I'm not sure which doc I'm going to ask for a prescription. I've explained to Jacquie that my pulmonologist thinks the meds he's prescribing me for WG should be controlling any asthma or other allergy symptoms, so is very hesitant to prescribe me inhalers. He thinks I'm getting enough steroids. He points out that prednisone and MTX are both used for treating asthma, which I confirmed online. He feels my asthma-like issues are actually the typical WG symptoms from the post nasal drip from the sinuses. I go along with that to quite some degree, as my breathing issues are usually relieved by coughing some of that up. But I think there is some seasonal allergy asthma and nasal/ear symptoms in addition. We argue about it every year. So I take OTC allergy meds without telling him, and got a steroid inhaler prescription from my ENT last year. But I never used it until this year, as my problems eased up on their own. And he told me in the future I should get the prescription from the pulmy. So it's a dilemma on where to try to get it. My PA would probably do it but i haven't seen her for a few years. A lot of this is my fault for putting things off and letting them slide. Probably this will clear up when the pollens die down. Sorry to go on so long. I'll get the prescriptions somehow when I feel I really must, if it gets bad enough. And I can take extra pred in a pinch.... not a great thing, but it works.

Jacquie, I like the idea of the nebulizer and will check on your link and other places, and could afford a used one for $35. But I guess for Medicare to cover any of it, I'd need a doc to request it and to prescribe the meds. So I'm not sure who I should try to get to do that. Maybe at my next pulmy appt. I can make a stronger impression about my breathing issues this year and he will do something. In the meantime I'll go in and see the PA if things get bad again. I think she will help. Thanks again for your help, I'll look at the link now and save it.

[annekat]

Jacquie, I just looked at that nebulizer link and would buy that machine for $40 whether I got help with coverage or not. Just can't do it right now, but soon. Then I'd figure out from there what to put in it and how to get it. I'm sure my PA would prescribe something. And how about a saline solution I could mix up myself? I think you posted some nebulizer recipes and I'll look for them. Thanks. It would be worthwhile even if I only needed it a couple months out of the year.

[BookNut]

I really think it would be a terrific idea. I am not sure what I paid for the saline ampules. I will get back toyou on that. I do knowyou can buy them without a prescription...but cheaper if you can get it covered by medicare. I guess I feel a little squeemish about making my own saline solution forbreathing into my lungs. the ampules are sealed and sterile. I DO make my own for my nasalrinse. I believe it is one part baking sodato two oarts pickling salt. Recipes are online. Since it is a rinse that goes inand out of the nose,Iguess i don't worry as much about being sterile.

I'd also feel much better if you always had a rescue inhaler. The steroid inhalers have their place....but won't helpin mid attack. You couldprobably get a small amount ofthe nebulizer ampules...duoneb or albuterol etc., and it would last you easily a couple ofyears. Then have the handheld inhaler version tokeep with you all the time wheyou are out.

took my last prednisone pill today. Will let you know if the new regimen keeps me in good shape for longer than usual!

[annekat]

Thanks, Jacquie. Will definitely look into it and wouldn't even mind paying for the ampules and stuff. If I can get someone to easily prescribe all this for me without a big song and dance, that would be good. I don't see why I should have to have trouble getting help with asthma just because I have WG. It is really just the one doc, though, the one I see for WG. Someday I'm going to tell him off.

I gave my albuterol rescue inhaler away because it was getting old and I wasn't using it. That was dumb. I do like the steroid inhaler but realize it's pointless to use it if my airways are already too constricted to get it down in there. I just got really clear by inhaling herbal steam and then used it, with the spacer, and feel like I did a good job. There are only 40 puffs left and I should be using 4 a day, 2 in AM and 2 in PM. So I'd better get moving. And it costs me $40/mo. on my Medicare drug plan, where all my other meds are really cheap.

Thanks again for your help, and I really prefer it when I can keep my replies short! Like this one.

[BookNut]

Just looked up saline solution. Can be purchased on Amazon. It would be cheaper to get a script. Maybe you could bring in some links to show your PA. I haven not found any counter-indications for saline. It is universally accepted for sinus issues as a nasal spray - and it is pretty widely accepted for inhalation for COPD and other respiratory issues. anyway - here is the amazon link:
Amazon.com: Modudose Saline Solution for Inhalation - 100/box(5257 - 5mL Unit Dose): Health & Personal Care (http://smile.amazon.com/Modudose-Saline-Solution-Inhalation-5257/dp/B002YRY3HI/ref=sr_1_2?s=hpc&ie=UTF8&qid=1429886285&sr=1-2&keywords=saline+solution+inhalation)

I just looked up my pharmacy account online. Looks like my medicare advantage plan does not cover the cost of the saline solution. How stupid is that? The total price I paid was about $1 less than Amazon. Anyway - it is not horrible for 100 inhalations. I am planning to use 3 a day as a preventative measure. But - if you only have to use it once in awhile when your chest feels a bit wheezy, tight or congested..it is not too bad a price.

I hope you resolve this. How silly of your pumonologist ( I am being nice with the word silly). Of course effects on WEGS have to be paramount. But come on, people can have asthma AND Wegs. - especially given your family history. Grrrrrr.... Hope you can get it worked out. Doesn't your PA work under the supervision of a doctor? If so - could she not run this issue past him. Then the doc could call your plumy and they could discuss it. Frustrating.

Have a good day Anne - and all my Weggie friends!

[annekat]

Thanks, Jacquie. Well, maybe the drug plan just doesn't consider saline to be a drug. In any case, the price is OK if the results are good. I think my PA would have no problem with this and would prescribe it and whatever inhalers I need without having to consult with the doc she works under. She has in the past. I just need to get over the sheepishness of not having seen her regularly since getting WG. I think it's been 2 or 3 years, no mammogram, pap test, or any of that, and I'll probably get a bit of a lecture.

Yes, the pulmy has an attitude. True that the WG meds would help with asthma but it is not black and white. If they aren't completely controlling my WG, why would they completely control my asthma and other allergy symptoms? I've told him that the ENT still thinks I can have allergies, and he just sort of shrugs. The ENT has prescribed me inhalers but the last time said I should get it from the pulmy. After all, he is the breathing doctor. I will do whatever I have to do, including getting a new WG doctor and pulmonologist.

[BookNut]

OKAnne....one more nag. You know we all nag you because we love you and want to keep you healthy. I don't know how this forum would function without you. Anyway - I continue to worry about you. So...I know I have suggested this before. Once you get a prescription for a rescue inhaler, ask whoever prescribes it if they have a spacer they can give you. If not - they are under $20 and there is no need for a prescription. Here is the one I use:

OptiChamber Diamond (http://justnebulizers.com/optichamber-diamond.html)

Ok. No more nagging. Until the next time I start to worry!

[annekat]

Jacquie, I already have a spacer! I bought it several years ago before I ever had WG at all, I think, because I'd previously had a steroid inhaler with its own attached spacer, albeit a sort of small and wimpy one. But when I got on Flovent, it didn't have one. I had heard about them being available to buy and got ahold of one. It is an OptiChamber Advantage. Same brand, different model name, as yours, and it seems to work fine. I found out it also works well with the albuterol rescue inhaler. When I get inhaler prescriptions, I want both the steroid and the albuterol. I'm also wondering if the nebulizer with saline might eliminate or reduce the need for the other two. But I should get all three, and could then use the nebulizer for the meds in addition to the saline, if it seemed like a good idea.

Using the Flovent has worked out well the last few days, when I stay at home. Yesterday and today I had to go sell at the Farmers Market in town, and today things got a little worse. There are pollens in town that aren't in my neighborhood, which are the offenders right now. Now that I'm home and it is starting to rain, and there is no wind, I feel a lot better. I can breathe. I'll use the Flovent again tonight. Tomorrow I should call my PA's office and make an appt. to talk about asthma and allergies. She knows my history with it and I think we can talk about it separately from WG. I'm sure she'd rather prescribe me the inhalers, plus talk about nebulizers and such, than see me take more prednisone when I'm feeling asthmatic.

Don't worry about nagging, and I'll straighten you out when you nag about something I've already told you I do. I have mentioned the spacer I have a couple of times in this thread, I believe. But I don't blame you; my posts get so long-winded you cannot be expected to catch or remember every detail! :smile1:

[annekat]

Oh, I see your spacer is "the successor" to mine and said to have some improvements. It looks a little fancier. But I think it is less expensive than what I paid for mine several years ago. So I will consider getting one at some point!
Thanks!

[BookNut]

Great!!! I can never remember who I have told about what and am too lazy to look backwards! :biggrin1:

I am feeling very empowered today. I see my PCP tomorrow and I know she will be very pleased with what I have to say. I am still feeling quite good, and am just VERY excited that there are proactive things i can do, instead of alwyas relying on the reactive things.

Exercise is good for bronchiectasis as it helps move the mucus out of the lungs. It was a gorgeous day today, so I put on my sneakers and my fluorescent walking vest and off I went. First five minutes you could hear the congestion moving up and down the windpipe.....but two or three coughs and the airways cleared up. I walked a total of twenty minutes. Not much, considering I used to walk 70-90 minutes a day...but it is a great start and I am very pleased!!

Still only using saline solution and my new best friend Sinatrol. Finished the ored on Thursday. Fingers crossed that things stay good!

[annekat]

I, too, am often too lazy to look backward, so I understand.

I'm glad you are feeling so good and have a PCP who will appreciate and celebrate the new things you have discovered. I didn't remember the name Sinatrol but looked it up and it must be the herbal stuff with the mucus thinner you mentioned. It sounds great, and the ingredients aren't things that would scare me as a Weggie. There is no echinacea in it, for example, which boosts the immune system. Some of the things in it I recognize as anti-inflammatories. It isn't cheap, but would be worth it if one can avoid the inhalers and pred! Your information is much appreciated, and it's impressive that you are just using natural things and not the yucky prescription meds... after Thursday, that is. It is inspiring to me, too, that I might solve some of these problems based on your experience. Thanks! (Not that I'm planning on quitting my Wegs meds anytime soon, guys :wink1: )

Oh, and the exercise.... yes. Tomorrow is supposed to be nice and there is no reason I can't get out on the road and walk. I'll probably get a little SOB, but will just head back home when that starts to happen.

[Bing505z]

I went to the Vasculitis UK Patient Symposium in London yesterday. A full on day with 18 world experts presenting. One of the presenters was Dr Peter Merkel from the US who gave an overview of the research going on. He listed many many items and stressed that there has never been more Vasculitis research going on than today!! It seems there are potentially some interesting new drugs in the pipeline. When the slide decks are published I will see if I can get some of the relevant data to this site. What surprised me was the fact that in some cases the drug companies are now 'sponsoring' some of the research - exciting times!


Please do ... and thanks in advance!

[LisaD1]

Drs. seem to want to get you off 5 mg pred as fast as possible though in Europe, according to a study I read, people are on 5 mg for up to a year after remission. wrong thread!