Do asthma drugs help with WG respiratory problems?

[BookNut]

I take symbicort twice a day and singular once a day. I question whether they are worth continuing. I also have prescriptions for albuteral and xopanex, but I don't use them at all anymore. They helped a little when my wheezing was really bad last summer - but none of my asthma meds take the wheeze away completely. The Symbicort doesn't seem to make the wheezing go away either - but it HAS seemed to help keep the wheezing under a certain amount of control. But that might be my imagination. I have a wheeze upon DEEP exhalation that NEVER goes away. It is not disruptive, since I seem to be getting enough oxygen and can walk 3 1/2 miles a day with audible wheezing during only the first mile. Believe me, I KNOW what being short of breath is like!

Anyway - I am wondering if respiratory problems that are caused by WG are resistant to the standard asthma meds? Every health professional I encountered while I was in bad shape seemed to think that albuterol/xopanex et al would be my salvation, and that I would shout "Hallelujah, I'm healed!" when they administered it. My husband is asthmatic - and he was amazed when I demonstrated that the deep wheeze does not go away with the admin of any of my asthma meds.

Does anyone have any insight? I hate to take meds if I don't have to....but don't want to tempt the gods by stopping. Thanks!

[drz]

My wheezing was caused by lung and kidney damage and anemia and slowly got better as Wegs went into drug induced remissioin and anemia resolved and lungs and kidney partially recovered. Part of it was learning to pace myself too and going through pulmonary rehab which helped me learn to make my lungs more efficient while active. I have never walked a mile since diagnosis but hope to work up to doing so some day. A half mile is usually my limit and at a slow pace too. I only take albuterol when I do the pentamadine treatment to make sure the drug gets into all parts of my lungs to prevent PCP. I was never given any asthma drugs for any help for me and wonder if they would help much if problems are caused by Wegs and Weg damage to our body. Others who have stenosis or partial blockage in their respiratory system might have more info on this from their experiences.

[Dirty Don]

Don't know much about asthma drugs, but Albuterol was a major player in my lungs recovering, as much as I hated the multiple inhalations every day. I still have the WG wheeze and dry hack, but even those have improved to the point now where I can do light cardio w/o the wheeze dominating my breathing. Don't stop the drugs...they are what they are and they keep most of us upright despite any cultural negatives over them.

[BookNut]

Interesting. I have no objection to taking the drugs really - except that, even at my worst (when I was getting 125mg prednisone injections), they seemed to do little good. The symbicort is easy to do twice a day. I just hate to take anything if it is not actually helping. Basically just wondering if a weggie wheeze is different from an asthmatic wheeze. Thanks for the replies dr.z and dirty dan!

[Tom]

I take symbicort twice a day and singular once a day. I question whether they are worth continuing. I also have prescriptions for albuteral and xopanex, but I don't use them at all anymore. They helped a little when my wheezing was really bad last summer - but none of my asthma meds take the wheeze away completely. The Symbicort doesn't seem to make the wheezing go away either - but it HAS seemed to help keep the wheezing under a certain amount of control. But that might be my imagination. I have a wheeze upon DEEP exhalation that NEVER goes away. It is not disruptive, since I seem to be getting enough oxygen and can walk 3 1/2 miles a day with audible wheezing during only the first mile. Believe me, I KNOW what being short of breath is like!

Anyway - I am wondering if respiratory problems that are caused by WG are resistant to the standard asthma meds? Every health professional I encountered while I was in bad shape seemed to think that albuterol/xopanex et al would be my salvation, and that I would shout "Hallelujah, I'm healed!" when they administered it. My husband is asthmatic - and he was amazed when I demonstrated that the deep wheeze does not go away with the admin of any of my asthma meds.

Does anyone have any insight? I hate to take meds if I don't have to....but don't want to temp the gods by stopping. Thanks! Hi there BookNut, I dont have asthsma but have COPD from my wegs. I started out with Advair and an Albuterol rescue inhaler, and Spiriva as well as prednisone. Those seemed to help for a couple of months but soon they became ineffective. I still take those same drugs after more than 2 years. Im not sure if I would be worse off with out them but they arent going to hurt me at this point as Im on o2 and believe I went from severe stage COPD to end stage prompting my hospital stay last week and now have added a script of theophilyne to try and open the airways. As advised, I wouldn't nix the meds. Sometimes it just takes a little to get them working but be persistant with the Dr and keep the wheezing at the forefront. I have to talk to my meds every morning, all 26 of them. They dont like me and I dont like them but they go down. I hate meds too!

[annekat]

Good question, Booknut, and one on my mind, too. I've had asthma off and on all my life and like to keep an albuterol inhaler around just in case. Now I have Wegs, and my breathing problems are mostly due to mucus in my bronchial tubes and trachea which is hard to dislodge. Once I cough it up, I can usually breathe a lot better. My doc doesn't really want me to use inhalers and just prescribes more prednisone and MTX when I'm flaring. But I believe in keeping an inhaler on hand and get it from a different doc. This is the time of year for seasonal asthma, if I'm going to get it, and at times I've felt it is there. I don't know why one couldn't have both, except that my doc says the Wegs drugs should tame the asthma symptoms, too. But bottom line is, if I can't breathe, I'll do whatever I can to breathe, and the albuterol does help. I'm very careful not to overuse it because I know from past experience it can cause a rebound effect and make things worse. My doc says it's for asthma and not for Wegs, but I wonder if he's ever not been able to breathe.

To answer your question, yes, the Wegs wheeze is different from the asthma wheeze. My Wegs wheeze is also more pronounced on exhaling. There's usually a sensation of something in there to be coughed up, though not always, and sometimes I'm not sure if it's that or an asthma wheeze. But the asthma wheeze is more of a tight, constricted sensation without the feeling of something being in there. If something is in there, some light, voluntary coughing can sometimes move it, while heavier, more forced coughing can swell up the area and keep it down there, or so I've been thinking. At some point I'll have a big coughing "attack", the noise will get more raspy and rattly, and something will come up, to my great relief. It can be alarming to other people, though.

Good luck figuring it all out!

[BookNut]

EXACTLY!! "There's usually a sensation of something in there to be coughed up, though not always, and sometimes I'm not sure if it's that or an asthma wheeze." I too have a sensation that there is something that needs to be coughed up. My grandfather used to have a "smoker's cough" - and even though I have never smoked, I sound like him sometimes - right down to my face turning red with the effort. The asthma meds take care of the tight, constricted feeling in the upper respiratory area - but don't seem to have much effect on whatever that &*$# stuff is that has taken up permanent residence in the lower area.

I am going to my ENT on Wed. to find out if I can have a biopsy. If that doesn't work out, not sure what I will do. Perhaps try the Imuran in the hopes of warding off worsening of the symptoms. Just wish I could feel totally confident that it is WG. Always good to know the enemy. =)

[annekat]

I sure hope you can get a biopsy from your ENT, Booknut. For me it was no big deal, but then I had obvious things going on like the saddle nose. I know my ENT had concluded that I had WG, largely because of the nose and my recent lung problems, and was excited, in a gleeful, nerdy doctor sort of way to find out, though he was also remorseful for not having thought of it sooner. But there was no "make an appt. for a biopsy"; luckily I was already the last appt. of the day, so he and his nurse stayed late to get it done on the spot. I kind of enjoyed the extra attention, something not that common these days in a doctor's office.

In your case, I seem to remember that maybe your nasal symptoms are not currently that bad (or maybe I'm wrong), but it seems like if you are getting that wheezing and coughing stuff up, that stuff is dripping down in there from your sinuses and you might have enough disease activity in that area to get a positive biopsy, if you indeed have WG.

BTW, speaking of inhalers, there are also the steroid variety, like Flo-vent, which are used daily to prevent asthma, not as an emergency inhaler like albuterol. My WG doc(pulmy) doesn't want me to use it, since I'm already getting steroids and immunosuppressants, but I can get it from my ENT and keep it on hand in case I think I'm having an ongoing problem and want to do a preventative measure. Both my inhalers are expensive for me right now with my Medicare Part D copay, so I really don't use them unless I feel I'm in some distress. A lot of times when breathing gets difficult I can get over it by resting and relieving whatever stress is going on.

[BookNut]

Thank you for mentioning the daily inhalers. I take Symbicort - but it is one of the things I question. On the one hand, I have "only" the deep wheeze on a daily (all day) basis - not the every 3-4 hour audible wheezing that requires my albuterol nebulizer or a rescue inhaler. I had not thought about possible interactions with the imuran that the doctor wants me to start. I will ask about that at my next appt.

I have to laugh at the "nerdy doctor" comment. That is definitely the kind of doctor you want. My allergist is one of my favorite doctors - and she is an incredible "nerd". Gets all into the "mystery" of it all. Calls my other doctors on the phone during my visits to ask why such and such has been prescribed etc. She was the first one to mention Wegeners...but referred me to a colleague because it was more in her area. She still continues to see me. Mostly because I think she is so interested. Guess I should be glad that there were doctors who just didn't attribute it all to COPD or asthma. I think it caught their attention, because the whole thing is so danged persistent, and I have practically no risk factors for respiratory issues. Non-smoker, non-drinker all my life. Worked as a librarian in a school. The ONLY risk factor was growing up with a smoker in the house. But I never had any symptoms at all till I was 64 years old.

[annekat]

I didn't get the feeling there'd be interactions between the inhalers and the immunosuppressants. My pulmonologist WG doc just doesn't want to load me up with steroids from the steroid inhaler when I'm already on prednisone, doesn't think I should need inhalers at all since I'm on WG drugs, and says inhalers are for asthma, not for WG. But I wouldn't go by what he says! He is somewhat arrogant and opinionated, and I think is overall a good doctor, but is NOT a WG specialist. My ENT thinks it's OK for me to use inhalers, if I need them sometimes, and his opinion is every bit as valid, IMO.

I should think any "deep" wheeze that lasts all day, whatever the cause, would be a reason for some docs to justify the use of the Symbicort inhaler, unless it just doesn't help, but especially as long as you don't have Wegs drugs yet and need some relief! When it comes to breathing or not, I question worrying about whether it is Wegs or something else that is causing it.

Since you mentioned allergies, My so-called WG doc also had me quit my allergy shots, which I'd been on for maybe a year and a half and I thought were helping. The docs at the ENT place, where my allergy treatment was also located, didn't think there was a problem with me continuing the shots while being treated for WG, and these are older docs with experience who I don't think know any less about WG than the guy who is treating me. So a lot of money and time was spent on the whole allergy shot process, which is now down the drain, since it would be like starting over if I went back to it. All the ground I gained is lost. I must say I don't miss going in weekly for the shots, though, paying for the vials, etc. So if allergies turn out to be a problem existing side by side with Wegs, I guess I'll just try to get on a good allergy med like Singulair or whatever is out there these days.

[Pete]

I was also diagnosed with asthma on top of GPA. I took pulmicort twice a day plus 10 mg/day of Singulair. I also have albuterol inhaler and nebulizer available, which I rarely use. At the beginning of the year, I changed inhalers from pulmicort to Asmanex. I did notice that I breathe a little easier on Asmanex. Made the change because insurance no longer covered pulmicort. Maybe a little serendipity there??

None of the asthma drugs seem to bother my GPA. I also take 10 mg/day of loratidiene and 20 mg/day of Phenylephrine for allergies (to seasonal grasses, dust, and molds) and as a decongestant to try to keep my ear clear. Seems to work ok.

Going to 1 mg/day of pred on Friday (he said knocking on wood), but even when I was at 40+ mg/day of pred, I didn't seem to have any problems with inhaled steroids.

[annekat]

Thanks, Pete. I don't think any of my docs think my using inhalers would bother my GPA in any way. I think my "WG doc" just has a personal thing about "as few drugs as possible" and likes to keep steroid use to a minimum so tries to lay down the law about me not using inhalers, since in his opinion, I shouldn't need them when I'm on GPA drugs and there's no sense in putting extra drugs into my system. He's NOT a WG specialist, though being a pulmy, should know something about asthma.... in any case, I take his viewpoint with a grain of salt and get my inhalers elsewhere, since he won't prescribe them to me. As I said, I don't use them a lot but think it is stupid for a person with an asthma history not to have them on hand.

Good to know about the inhalers you are using and the one that might be covered if the other one isn't. Perhaps it would be cheaper on my Medicare drug plan than the one I just got. Most of my drugs are cheap for me but for some reason inhalers are not. Also good to hear you are using Singulair, one I tried years ago but couldn't afford the copay... things could be different now.... and I also can go back to either generic Zyrtec or loratadine, and had sort of forgotten about those. It's been a long road from thinking I had severe allergies, taking those things and getting shots, to finally knowing I'd had GPA all along so even if those things helped some, there was a lot more going on than I thought....

Congrats on getting down to 1mg pred!

[BookNut]

OK - between talking with you and talking today to my allergist (who works in the same practice as my rheumy who dx WG), I am feeling much better about the diagnosis. ....If one can feel better about a dx of WG!!=)

She told me the allergy meds would be fine to take along with the imuran. Especially since the symbicort has kept my breathing issues much more stable - even if the deep wheeze never goes away. At least the shallower breathing wheezing stays away!! She also felt it was a good idea to get a biopsy to add to the other markers I have. My allergist is the "nerdy" doctor I mentioned. Nerds rule!!! Because they are INTERESTED and challenged to find the right answer.

Actually, had the rheumy talked in a bit more detail, I might not have been so concerned about her dx. The allergist is way chattier and shares the nerdy details, which I appreciate even if I don't quite understand them. She printed out the results of my lab tests. Had I seen them, I would have been much more certain that we are going in the right direction. Although the ANCA reading is on the low side of high at 1:20, it has been higher at times when I am really bad. And there are some markers for kidney involvement. That is definitely enough to convince me to start taking the imuran. I see the ENT tomorrow and hopefully we can get a biopsy done quickly. I read the posts here and think - "this can't be me. I'm not that sick." But, as my allergist says, I have respiratory problems that are not responding to conventional treatment, along with abnormal lab tests, and an illness that has gone on for a lengthy period of time. All of this can add up to WG even without a biopsy. She says it is worth trying the imuran to find out if it will improve my condition and avoid being as sick as a more "typical" Wegener's patient. That certainly does make sense. Yay for the nerds of the world!!

[annekat]

I wish my docs were "nerdier" in the way yours is.... my ENT only was when presented with an opportunity to stay late and get a WG diagnosis via biopsy. My PA (GP) can be pretty nerdy, though, and has gone off on some tangents about some of my symptoms and conditions. She's the only one who normally spends more than 10 or 15 minutes with me (if that), and genuinely seems to care and be interested in what is going on with me. To a point; she eventually has to cut me off due to time limits.

I get the feeling a WG dx is not usually considered for sure without a biopsy. That being said, my ANCA reading was low, too, and I did end up having WG. But it seems strange that you have a rheumy that thinks you have WG but hasn't insisted upon a biopsy to make sure, and wants you to go ahead and take WG meds anyway. On the other hand, if you can't get a positive dx, perhaps her thinking is reasonable, you should take the meds anyway, to see if they help, since you aren't talking about the real bad boys like Cytoxan.

[Alysia]

Hi Booknut,
I did biopsy twice from the nose, with no granulomas. so I didnt started "hard" treatment then, only pred and sulfa. It was considered "limited WG". but then started deformation in my nose. I think it is the right thing to start with Imuran, to prevent damage.
Good luck !

[BookNut]

Did you eventually have a biopsy that confirmed the diagnosis? I am just wondering what I will do next if my biopsy is inconclusive.

[BookNut]

Hi annekat,


My doctor is SO nerdy, she called me personally at 8:30 this morning (after yesterday's visit) to find out if I was sensitive to NSAIDS. She'd been thinking and wondering about Samter's triad. The syndrome has all my symptoms....except I take aspirin and ibuprofen frequently without any problems. Nice try though, and I appreciate the fact that I am not forgotten the moment I walk out the door =) Alas! She is not my rheumy and will probably not end up being the doctor who primarily treats me for wg.

[annekat]

Hi Booknut,
I did biopsy twice from the nose, with no granulomas. so I didnt started "hard" treatment then, only pred and sulfa. It was considered "limited WG". but then started deformation in my nose. I think it is the right thing to start with Imuran, to prevent damage.
Good luck ! It's hard to imagine you would get the nose deformation after a negative biopsy, and makes me wonder how competent the doctors were and whether the biopsy was done right. It seems wrong that after they came to the conclusion you have WG, even "limited WG" , they would not start with the "hard" Wegs drugs immediately, instead of waiting for your nose to deform. I seem to remember reading on here that nasal biopsies are not always conclusive in their results. How was your ANCA reading... did it show a likelihood of Wegs?

[annekat]

Did you eventually have a biopsy that confirmed the diagnosis? I am just wondering what I will do next if my biopsy is inconclusive. I might remember hearing some, but not that much about nasal biopsies being inconclusive. I've heard more often that they are a good way to dx Wegs. But I understand your concern. If it is inconclusive, at least you already have a doc telling you to take Imuran..... so I'm guessing in your position, knowing what I know now about Wegs, I would be tempted to go ahead and take it, along with a good dose of pred and some Bactrim, if you aren't already taking those. I'm thinking of Alysia as an example here....

[annekat]

Hi annekat,


My doctor is SO nerdy, she called me personally at 8:30 this morning (after yesterday's visit) to find out if I was sensitive to NSAIDS. She'd been thinking and wondering about Samter's triad. The syndrome has all my symptoms....except I take aspirin and ibuprofen frequently without any problems. Nice try though, and I appreciate the fact that I am not forgotten the moment I walk out the door =) Alas! She is not my rheumy and will probably not end up being the doctor who primarily treats me for wg. Wow, that's pretty nerdy, all right! Leave it to her to come up with something I'll bet most of us, including me, have never heard of! Samter's triad? Huh? Google, here I come! I do think it is really cool that she thinks about you after you are gone.... I wonder how many of them really do that. And calls you personally..... my slightly nerdy PCP (a PA) has done the same thing a couple of times to talk about my calcium and Vit D level and I forget what else. It is nice to know when someone really cares!

[annekat]

Looked up Samter's triad... well I guess it might be better for a lot of us to have that instead of Wegs! Not to minimize it. I wondered about myself there, but haven't had polyps or known sensitivity to aspirin or NSAIDS. So I guess I have Wegs.