No major major complaints for the time being, but as always on the asthma front, there’s some good news and then there’s some not so good news. Here’s the latest:
Ive been in my “green” breathing zone pretty much steadily now for the last 6-7 weeks and Ive been off the prednisone for almost 5 weeks! That’s a very good thing, because it means Ive been able to exercise more. And when I’m able to exercise more, everything in my life seems to go better.
On the not so good side of things, Ive been requiring more frequent nebulized Albuterol treatments. It used to be that on a good day, I could go 6 to 8 hours in between breathing treatments….now, it’s more like 3 or 4 hours! It used to also be, that when I’d wake up in the middle of the night short of breath, I could take a couple hits off the inhaler and get enough relief to fall back a sleep. Now when I wake up, I’m so SOB that the inhaler just doesn’t cut it . Instead, I have to get out of bed and take a neb treatment.
I don’t think this increased need for bronchodilators can be totally blamed on stopping the prednisone, as this was happening even when I was taking prednisone on a daily basis. More than likely, there are several factors including; a more acute perception of respiratory discomfort, a decline in overall lung function, and the erratic bronchospastic nature of my airways. Believe me, there’s nothing worse than waking up in the middle of the night, gasping for air because your air passages decide to clamp up! This happens to me almost every night.
I should also mention that I don’t buy the argument that Albuterol inhalers are just as effective in delivering medication to the lungs as nebulizers. Granted, many, if not most people out there, don’t use their inhalers properly. But no matter how good or bad your technique is with an MDI and spacer, you have to have enough lung function to inhale the drug into your lungs. With mild shortness of breath it’s no big deal, but when you’re tight as a drum, that’s a different story. I guess the key is not letting yourself get that SOB in the first place ( but that’s another post).
What Ive tried to do recently when I feel the need for a treatment, is to limit myself to 10-12 breaths on the machine and then wait a few minutes and re-check my peak flows. If my PFs improve even minimally, I’ll discontinue the treatment and do some mental imagery until I “feel” better. When I take treatments in the middle of the night, I’ll take as few as 5 or 6 breaths, so that I don’t wake up completely. I don’t get total relief, but because I’m still half asleep, it’s enough where I’m able to stumble back to bed and hopefully doze back off.
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I do the waking up in the middle of the night as tight as a drum thing pretty often, more so at the moment as I’ve got a nasty chest infection AND I’m back on the pred (hate hate hate) but it was either that or hospital and I have too much to do to spend time in hospital recovering when it would be an open-ended stay not just a quick two days of IV drugs and I’m out again, plus I felt pretty bad so I’m on them for the moment and we’re going to try weaning down at 5mg a day, and if that doesn’t work then 5mg a week and if that doesn’t work then back to the usual 1mg a week and I’ll be off then in time for next Christmas and my next birthday after the one coming up shortly.
But you do look okay off the pred and if you can stay that way then go for it.
I agree with you about the inhalers being just as good as nebulisers, if you have the breath to use an inhaler then go for it, but sometimes a nebuliser is all that’s gonna do it – at least for me that’s how it works.
Stay Strong
Joey
Joeys last blog post..Chest Infection
How about oral albuterol? It may help with some of the air trapping (where the inhaled won’t reach) and also cut down on your neb treatments. Vospire ER comes to mind; plus, it’s generic now.
Hi Jay, Nah, I don’t taken albuterol in pill form because of the side effects. Makes my heart pound and makes me extremely edgy. When I was kid I used to take a popular asthma drug at the time called Tedral.
Awful stuff! It was a combination of theophylline, ephedrine and pnenobarbital. Did very little for your breathing, but made you hyperactive, nauseated, and psychotic all at the same time.
They finally pulled that nasty stuff off the market in the US, but I think they still sell it in other parts of the world.
Between Tedral, Primatine mist and theophylline suppositories, it’s amazing that so many of us survived childhood.
Hi Steve, I agree, Tedral was a nightmare. I’ll take a 8mg Vospire when my lower airways are twitchy and I can’t get my combo of Xopenex & Ipatropium to them…works fairly well. Yes, there is a mild cardio side effect, but it sure beats having a portioon of your lungs locked down and lead to bigger problems.
It seems like nebbing every 4 hours would be worse on your system than having a controlled release over a long period. Breathing that stuff in makes it immediately available to your heart in a burst.
Take care…
Hi guys,
Interesting stuff as usual here!
I too have done the other Ventolin forms in childhood particularly, when being given a neb was really ER stuff and not a home thing-have had the slow release tablets (Volmax), syrup, suppositries. All have a worse effect for me systematically with the pounding heart and head side effects. In truth, nothing beats constant nebbing when lower lungs are really clamped.
Steve- I’m going through a ‘stuck’ phase atm so am on 2 hourlys and 50mg again. And of course coupled with a course of 2 more anti b’s. I’m using a PEP device attached to the mouthpiece as well, and doing PD if I am needing to drain, pummelling to get me coughing better, and every other sort of possibly helpful physioterrorist attack.
But this is where being on aminophylline usually pulls me through. I can always tell my level is too low when my lower lungs feel ‘cold’ and that tightness doesn’t quite relent even with the constant battery of nebs! Like you, I just have to ride it out and stay in contact with the prison officers!
Science and personal preference I think!
Hugs to all lungers-
Sus xx
I’m sure you are aware of the “science” that has proven that aerosols work just as well as MDIs, but in most of these studies 10-16 puffs were used.
I agree with you that even used properly with spacer, mdi’s are NOT as effective as a breathing treatment. Like you, I make that decision based on personal experience.
Maybe we’re just stubborn.
ricks last blog post..Exaggeration of asthma
Thanks everyone..excellent responses ! I’m going to do a follow- up post on this topic.
Hi Steve,
I may be over stepping my welcome by doing this, but would you mind if I “threw out” some general questions that may, or may not, be pertinent to you? Your blog has unique access to severe persistent abd brittle asthmatics. Something that’s hard to come by.
1) Do you (or anyone) have experience with Alvesco? It seems like it can significantly reduce systemic effects of inhaled steroids. I know that I inhale powerful doses steroids (symbicort & Qvar)that it’s sure to have a systemic effect. I’m 51 and would like to stay away from type 2 diabetes as long as possible. Plus, I have osteopeania and would like to stay clear of osteoperosis.
2)I have had positive results from Xolair. There are a number of articles out there that hint that Xolair is really a compromise and has been kind of a disappointment to Genentech. With this being said, it looks like there is a more specific free IgE binder that is comming down the pike, mAb14. Please inform of updates.
3) Also, if anyone has experience with bronchial thermoplasty, it would be great to hear from you. Thank you very much. Breath well….Jay
Reading all these comments makes me thankful, yet again, that I’m raising an asthma kid NOW when meds are so much better. Re: MDI’s vs. inhalers–what’s really crazy is that the medical community has so many different views on this. I had one pediatrician tell me, while he wouldn’t recommend it, that I could use 8-10 puffs of the bronchodilator on my kid if she really needed them, to approximate the effects of a neb. treatment. Others have told me no, the neb’s best for severe flares.
AG hasn’t used her nebulizer in a long time, even during the rough patches, but I just can’t get rid of it.
Hi Jay, I’ve heard of Alvesco , but haven’t tried it because my insurance wont cover it. I’m not sure if it’s any safer than other inhaled steroids.
It’s my understanding that bronchial thermoplasty looks very promising for those asthmatics with a strong bronchospastic component to there disease. I know they’re calling back the phase III trial participants for a follow up study. That usually means that they’re rapping of the clinical trial portion of the research.
Hi Steve,
I guess what I had in mind was to have an area for dialogue for severe asthmatics. The capability for other severe asthmatics to post w/o it being a comment to one of your posts (blog). I have not been able to find a hard core asthma site that pertains to state of the art care. Other sites are either remedial at best and apply to pediatric patients. Such as how to deal with asthma and school, correct way to use a MDI or covering the different classes of meds. Unfortunately, what I’m describing leans more toward a forum. I’m not sure you’re software has that type of capability.
I’m sure your walker athletes don’t want to wade through what they think is asthma clutter in the comments. What I’d like to see in the long run, is to possibly have some professional users log in and give their opinion, or share their rumors with regard to what is coming down the pipe.
I know there are “serious” adult and child asthmatics that are hitting your site that could educate each other. You are an RT, so possibly you have had patients that you keep in touch with, that are severe and would like something that I’m alluding to.
Specifically, if there is someone out there who has had bronchial thermoplasty performed on them, perhaps they could ring in w/o thinking they had to make a comment about an article you posted regarding one of your truly fascinating adventures to Italy, etc. I would truly love to communicate with one of these people. Unfortunately, we can not go to them. They have to come to “us”.
I would truly love to have someone chime in on their experiences with Alvesco. I will probably pursue it once I go through my current supply of meds and can get some first hand user history.
Due to my noticed benefit with Xolair, I was shocked/excited that there is a more selective, efficient monoclonal antibody in the works, ie mAb14.
These are just suggestions and wishes. I already glean alot from your experiences and it was due to that, that I’d like to see others participate to leverage this great site.
Anyway. Thanks for your hard work…I’ll still be tuning in whether changes or not.
Jay
Jay, I am in Canada and is about your age with severe esophilic asthma. I am on numerous inhalers (Zenhale, Combivent Respimat, Spirivia Respimat, azithromicin (Monday, Wednesday, and Friday Singulair, and off-on prednisone. I am also on the new biological drug Fasenra. I was on Nucala, but was still hospitalized twice while on this drug. I am an athletic person and rely often on nebulizer treatments. JAH
Sorry Jay, I misunderstood. No, this blog isn’t set up for that type of interaction. I use this blog mainly as a personal diary.
I tried to start a forum specifically for severe asthma (hosted at Google and Yahoo groups)last year, but it wasn’t very successful. To be honest, I just don’t have the time to devote to it anymore.
If you ever decide to launch your own group, Id be more than happy to contribute in someway.
Jay -this isn’t quite the info you are after but, a very small input….
I was tried on Ciclesonide in mid 06. Under the watchful eyes of my pulmo docs and whilst I was already in hospital with my asthma.
I did not get on with it for the following reasons:
It seemed to be ‘harder’ to inhale (MDI+Spacer) and felt like it was clogging my upper airways-made me cough considerably and induced a further degree of bronchoconstriction. I had very tight airways anyway so it was a challenge to inhale anything other than through a nebuliser.
I had the ENT scope camera passed down through my nose at the time to check reaction of VCs and possible VCD brought on by the drug. This was all fine. But when the drug hit my lungs, it was the reaction of the inhalation that my upper airways did not like.
Secondly, this then attributed to something along the lines of an allergic reaction.
At this time, my lung health was particularly grim and I was extremely twitchy and reactive to justabout anything. It was then following further attempts with the Ciclesonide, and a random mis-prescribing of a generic inhaler, we proved that I was allergic to the ethanol content of the Alvesco. This was not mentioned in the prescribing info, but in small print on the leaflet. Beware if you have alcohol/ethanol issues with twitchy lungs.
Seeing as I had been using the two separate components of Advair since 1995, it then seemed slightly pointless to attempt to find something ‘better’ for me than the Advair and it would have meant taking the Salmeterol separately again of course.
In short, I do not currently know of anybody who has successfully switched to Alvesco at my hospital,-most of my asthma buddies are changing to the SMART programme with Symbicort. But I do know of another hospital who have switched a few people, but along with several other meds so it is slightly difficult to work out if it is the combi of meds or the single inhaler that is working.
Personally I do not wish to try anything that might upset my current asthma applecart-also Alvesco is (here in the UK) tricky to prescribe-even hospital pharmacies do not seem to stock it readily. Interesting that Steve said his insurance wont stretch. Poss beacsue it is in some ways ‘half’ the Advair and you’d end up with a separate preventer script.
So that’s it, I’m sticking with my Advair 500/50 2puffs BD!
Perhaps when you’ve read this, Steve will delete? As I feel I’m now a thread hijacker-
Sus
Hi Steve,
Well, I’m not willing to put the time and effort into a “forum”. I certainly don’t blame you. As mentioned, I appreciate the information from your site, even the walking stuff. So, thanks for what you are doing!
Hi Sus,
Well, you brought up extremely useful information. I am allergic/sensitive to ethanol and get an anaphylactic reaction to digesting it, not sure about other exposure. I guess the Alvesco is out the window, but you are the ONLY person I’ve communicated with that has tried it. I know Ciclesonide has been available in the UK for awhile. My interest is in the possibility of reducing systemic side effects.
Anyway, would it be possible to get your email address. I will post mine. If you don’t want to, that’s perfectly understandable.
Thanks….Jay
$123456jff@gmail.com$ (remove the dollar signs at each end)
Hi Jay, I do have a message board on my site “Living with Brittle Asthma”, that you can get to through my blog of the same name in Steve’s blogroll, if you join and post your questions there someone in the UK may be able to answer your questions as although it’s internet based, it is mainly UK people, there aren’t many people on there at the moment, but I know people do browse and may answer your questions if they have the answer or experience you’re looking for.
Hope that helps
Joey
Joeys last blog post..Christmas is coming
Thanks, Joey! I’ll check it out.