Yep Sue is right...this is burst TWO for me...typically that makes things change quickly especially considering I'd only been off 8 days and didn't wait for things to continue to get worse.PLus I was still on the double inhaled steroids so my levels were high.
On a first burst (and I have to wonder if 9 days- which is what I think you said you got is going to be enough to really turn this around) Pred loosens up things and we've always had a saying here on the boards about things having to get worse before you get better. Sometimes I've been on a week before I start to feel like there is improvement--and I know its hard to say be patient since you feel sooooooo bad.
I understand how tired you are with all this as I am in the same leaky boat. I've had this flare since Christmas eve--feels forever since I felt halfway decent. I am tired and crabby and I HURT---yesterday we had strong barometric pressure changes which flared the rib pain and I hurt so bad I'd have been happy to throw myself under the bus to make the pain stop...and pain meds did nothing. It hurt to breathe let alone move.
My biggest thought is until you get answers on this most recent set of testing they did, perhaps you need a slightly longer course of pred as it seems you start to get better and then decline again, maybe they are just beating the flare down but not out--this can be an issue for me and we have found HARD and fast and for a longer period of pred works better than shorter courses yet repeats?? Just a thought.
I feel your pain and your frustration..I really do. Right now I am just exhausted, feel like doing nothing and the emotional roller coaster is really hitting hard. I've never had this much of an issue with pred side effects, except for the insomnia, while ON the darn stuff. While the cough is vastly improved now and I just get a little hacking after the nebs, I feel wrung out both physically and emotionally....at the end of my rope so to speak.
Just remember you are not alone...we all know how you feel and its hard to suck it up and remember better days are ahead when you feel this bad.
Today was educate the doctor on cough variant asthma 101...he was in a listening mood and nearly saw his eyes pop out when I explained before we moved here and my asthma got very stable ( I had been going 2-3 years without pred for the last 8 years or so), It was not unusual for me to average 8 bursts of pred a year....he was speechless. I explained that after awhile you develop a good instinct about what the lungs need and when. A flare without a cough usually is a 12 day burst and its over and done, but add that cough and back to back bursts are the norm--and on occasion a third burst before all was said and done.
He said he'd never seen my asthma like this so it caught him offguard, but listening to me explain how bad it was, makes him realize I am pretty good about knowing what I do or don't need.
Chest xray was fine and no broken ribs...they just hurt like blazes. O2 sats were 100--that always makes him shake his head. But then mine NEVER drop below 98--likely they think because we lived at high altitude for so long its builds up lung volume and partly because cough variants tend to have small airway issues not large--which is why peak flow is so unpredictable for us.
He also agreed since I got such a quick response to the pred we can not worry about changing BP meds since I had a hard time finding one that worked for . I told him instinct plus a wheeze indicated asthma flare not side effect of BP med.
So for now its 16 days of pred and hopefully this will turn things around.
I actually managed some sleep last night even on the pred--the ribs kept waking me up as it hurts to lay in any position but at least it wasn't a totally sleepless night. That insomnia stuff sucks!!!!
So keeping my fingers crossed and hope all works out well!!
Wow about 10 hours since I took the 40mg of pred and I have coughed only rarely!! WOOOHOOO!!! ok I hate the stuff but when you need it you need it. Now I need a nap...any chance that will happen??
Judy, I don't think this is an infection...no fever, no indications anything is even brewing. Aside from the cough I feel ok. This just feels like a finicky asthma flare, and I've had a few of these.
The wheeze could just be that the airways are opening up with the nebs and air is actually moving. Sue (who is also a cougher) said she has had a few bad flares which produced a wheeze so maybe this is just another twist to the cough variant form??
We shall see what the doc has to say tomorrow. I am not always inspired by his treatment of my asthma but it was hard to find a doc here who had a clue. The urgent care doc we had here was amazing...understood severe asthma so well and was so saavy..this flare would not have rattled him...he will be missed!!!!
Same day appointments here with any of our docs are all but unheard of...they just seem to practice a different type of medicine here.
I scored 16 more days of pred!!! woohoo!!
My doctor has never seen my cough variant asthma in full swing so he was nearly in PANIC mode when he called. (they just do not get much severe asthma here so they are not asthma saavy) Worried because the cough hadn't cleared and for whatever wacky reason wanting to change most of my meds. I had to talk the poor guy down off the ledge when he called.
I explained that those of us with cough variant asthma are trickier to treat when the cough sets in. Its not uncommon to need two bursts of pred. Plus this URI has left folks w/o asthma coughing for weeks on end. Even the pharmacy staff was surprised at his shock over the 2nd round of pred. I am not overly concerned as I have seen my asthma behave this way...usually a 2nd round of pred kicks it back under control.
He wanted to change my BP med as ace inhibitors can cause a dry cough, which I knew . But as I pointed out its not just a dry hacky asthma cough there was a WHEEZE present which indicates respiratory issues and I am coming off a bout of bronchitis.The asthma cough has a very specific feel to it. IF this burst of pred doesn't kick the cough (and its already working on ONE 40mg dose) then I'd consider changing meds but clearly logic says not just yet.
He did do an chest xray which was fine...better to be sure we are not missing anything. Even the xray tech said he could hear the congestion when I took a deep breath....he says wow that's an asthmatic bronchitis congestion I hear...YEP It is.
So I see the doc tomorrow and we will hash out the change the BP med...I just don't think that is the issue. But I took the first 40mg dose of pred today and the cough is 100% better already, so that leads me to believe I am on the right track??
Not thrilled about more pred but when you need it you need!!
I generally don't take the cough meds as the pred seems to work better but on occasion I will take some delysm so I can sleep. But then on this high dose pred sleep will be MIA for a good 7-8 days...isn't that something to look forward to. NOT
Will be intersting to see the discussion I have with the doc tomorrow....need to educate the dear sweet dude in the ways of CVasthma.
Yeah isn't this fun...week five but who's counting. Been off the pred 8 days and the lingering cough hasn't changed a bit. Nebbing albuterol/atrovent 4 or so times a day and added back in the nebulized pulmicort...not a change.
Saw the gyn today to check on the biopsy site which is not healing well....all the pred slowed the healing process. Since I got off the pred the large purple fist sized bruise is finally lightening and I am getting a pretty shade of green here and there...she agree's the pred is to play in the lack of healing. Hopefully with time this will continue to heal.
But the big news..I STILL Have a wheeze in the left lung, upper and and lower lobes. Guess that accounts for the cough???
When I saw my internist on the 24th I was still on 10mg of pred and the lungs were clear.....can we say REBOUND??? Of course I called his office and he is not in and the nurse was adamant I would need appointment but he has none this week.....his regular nurse will be back tomorrow so maybe she can work me in. (they are not great about working you in when you need to be seen)
Last visit with internist he was adamant no more steroid (which I agreed with at the time)...will see how he feels now...I mean wheeze (and I don't wheeze normally) and a lingering cough which is not getting better would seem to indicate pred...grrrrrrr.
OK a girl can only be so patient...its been nearly 4 weeks of coughing and there seems no end in sight. While the cough is significantly better than it was, it just doesn't seem to want to stop and I am frustrated!!!
I have one rib that is still tender and really not liking all this coughing.
Still nebbing albuterol/atrovent three times a day.
Do you have a rescue/albuterol inhaler. If so you would use it in this type of situation.
If you need your rescue inhaler more than twice a week and are a diagnosed asthmatic, its time to call your doctor as your asthma is not under good control. If you are currently taking medications for your asthma, it sounds like time to talk to your doctor, have a review of your meds and symptoms and maybe change your medications to see if you can find a combination to get things under control.
Sonya is correct about the albuterol inhalers only being available in name brands due to the propellant change.The newer formulated inhalers are readily available but more expensive than the old generic formulas.
For me the HFA formulated inhalers provide no relief and are worthless as a rescue inhaler. I purchased a small battery operated Omron portable nebulizer and use the liquid albuterol solution (which is very inexpensive).
This is a legitimate grass roots campaign trying to get the government to temporarily lift the ban on CFC propellant until the drug companies can find a newer propellant that allows the newer inhalers to work effectively for all respiratory patients.
Finally I am off the evil nasty stuff. Aside from a brutal couple of days after I took the last pill...I had bone/muscle pain so bad I could have sat in the floor and cried it hurt so much. But thankfully the lungs didn't seem to protest too much. Some minor shortness of breath but after day 2 of no steroid that got better.
Still have a cough...how is after 18 days of pred there can be anything left to cough??? Its better and more hacky now---typical cough variant cough. It is aggravated by talking, so I am trying to limit that. Still running the albuterol/atrovent nebs 3 times a day as it seems to really knock the cough out for hours at a time now.
I feel better just have no stamina or energy, so I am trying to pace myself slowly as I surely do not want rebound!!
Someone needs to wave that magic wand and make the cough go away....otherwise its SO NICE to be off the pred. I had so many wicked side effects this time and so bad...haven't had this many issues with pred in a long long time.
Costochrondritis is far better though...found those lovely thermacare wraps worked miracles!! I bought the extra large back/hip size and I was able to wrap them completely around the rib cage and leave them in place a good 8-10 hours. They stayed warm, never got over hot and didn't seem to make me cough at all.....plus they added just a tiny bit of support which helped with those chest wall muscles which were tired and worn out. Still have some rib pain but is light years better than it was!!
Here's hoping i can get my asthma back on track and be pred free for long periods of time!!
Something you might try is to hot pack your sinus's.....sometimes that gets enough blood flow to the area that it will let them start drain. Since the drainage isn't discolored it could just be inflammation in the sinus passage and sometimes that will make a difference.
Sorry to year you are getting winter...we are having spring..literally. Setting record for days in the upper 50's the tree's are blooming and its freakishly warm.....we should be cold and snowy!!