Feeling kind of frustrated

For the last week and a half my asthma has been acting up again. After a couple of good weeks it seems somehow harder to deal with when things go back to where there were before. I had a few weeks where I was feeling pretty good and my energy level was actually better than it has been in years. That made me really happy.

But now I seem to have slipped back to where I was earlier this winter.  I'm tired a lot again. My peak flow won't go up to personal best without a kick in the butt from ventolin. Some days (like yesterday and today) it drops to the bottom half of the yellow zone which makes me breathless doing even simple things, like walking around or standing doing dishes. For much of yesterday and today, ventolin was barely laating an hour or two before the peak flow dropped right back down to where it had been.

I'm on so much steroids (2000/day seretide + 30mg pred) and this is still happening. You'd think with all those steroids I'd be able to avoid exacerbations. I realize it is hay fever season. But I'm also on drugs that are supposed to stop allergic reactions. I just wish there was a way to make all these meds work the way they should for more than just a few weeks.

What's also upsetting is that this is happening right before I'm supposed to do my next step down on a pred taper. But that isn't going to happen if I'm in the middle of an exacerbation. My pulmo wants a very slow taper. Even if everything went perfectly and I did every step down on the taper when planned, I'd still get down to zero just barely in time for next cold season.

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  • o no sorry your not feeling 100% i think u need a trip to your gp or asthma team ? I have ups and downs with my asthma so much that last year was in itu for 2 days but u need to try and get regular appointment's with your gp and every time u have a bad spot they can help u i have a personal action plan and it works every well i get on well with my gp and she is also asthmatic so she understands how it feels and the stress and worrys that come with asthma

    Or try give A UK a call they are gr8 ! there advice line is amazing ! and its free from a land line !!

    Hope u feel better soon and hope you can get your asthma back under control and be happy ect

    all the best

    Mathew :)

  • Thank-you for taking the time to read my post and respond.

    Sorry to hear that you had to spend time in ITU. I hope this year has been better for you?

    I have a pretty good relationship with my GP too. I talked to my GP at lunchtime today (I'm in Israel so today is a work day, luckily) . He up'd my pred to 40mg for today and tomorrow. Then if all goes well, I get to go back down to 30mg. I hope he'll be ok with my going down to 25mg if things are stable for a few days after that. (I was supposed to taper down to 25mg on Tuesday).

    He also put a hospital referral in my file in case things get worse tonight.

    Tonight everyone and their brother is going to be building bonfires for a holiday called ""Lag B'Omer"" . Not a great situation for me or any asthmatic.

  • Hi beth, sorry to hear your asthma is playing up again, I can see why you'd be frustrated when you're trying to reduce your steroids.

    But now I seem to have slipped back to where I was earlier this winter.  I'm tired a lot again. My peak flow won't go up to personal best without a kick in the butt from ventolin. Some days (like yesterday and today) it drops to the bottom half of the yellow zone which makes me breathless doing even simple things, like walking around or standing doing dishes. For much of yesterday and today, ventolin was barely laating an hour or two before the peak flow dropped right back down to where it had been.

    I can sympathise with this, I keep trundling along well in my green zone with barely any reliever ....then boom I get a cold or bug of some sorts and I end up with a chest inferction, my peak flow drops to 60% and I'm relying heavily on my ventolin. Like today, I went to make a cuppa, got to the kitchen and had to sit down, it took 4 puffs of ventolin before I could finish making it and go drink it, ridiculous! I've been swapped to seretide for about a month now as the gp wasn't happy about how many courses of steroids I'd been on already this year, but I fear its not helping. I've been told my chest is clear his time but I'm not convinced, I feel like I'm drowning in mucus and coughing hurts my chest so much. ......I'm sorry, I fear I've rabbitted on about me and hyjacked your thread sorry, jus wanted to say that I know how frustrated I feel without trying to taper at the same time!!!

    Hope the bonfires don't cause you too much trouble tonight xxx

  • Lou - thanks for the encouragement.

    I can sympathise with this, I keep trundling along well in my green zone with barely any reliever ....then boom I get a cold or bug of some sorts and I end up with a chest inferction, my peak flow drops to 60% and I'm relying heavily on my ventolin. Like today, I went to make a cuppa, got to the kitchen and had to sit down, it took 4 puffs of ventolin before I could finish making it and go drink it, ridiculous! I've been swapped to seretide for about a month now as the gp wasn't happy about how many courses of steroids I'd been on already this year, but I fear its not helping. I've been told my chest is clear his time but I'm not convinced, I feel like I'm drowning in mucus and coughing hurts my chest so much. ......I'm sorry, I fear I've rabbitted on about me and hyjacked your thread sorry, jus wanted to say that I know how frustrated I feel without trying to taper at the same time!!!

    So sorry to hear you are also having trouble. Never fear hyjacking my threads - I know it helps me a lot to hear how other people are coping. I also know how much it helps me to vent from time to time, especially when there is nothing to be ""done"" other than wait for things to get better or make yet another call to the GP. So you are welcome to both rabbit and hyjack :-)

    Hope the bonfires don't cause you too much trouble tonight xxx

    Managed to get through OK which is a big yeah! Today ventolin seems to be sticking longer as well - I'm still at the top of my yellow zone three hours after doing a neb. Crossing my fingers that this is going to keep up. The last two times we had to stop the taper and up the pred, it took four days before my lungs stopped bouncing around at the tiniest hint of a trigger and ended up with a couple of nasty flares before things settled down. The pulmo doubled the inhaled steroids last month so maybe with the doubled inhaled steroids the 40mg actually works to keep things stable?

    This exacerbation is kind of weird. I seem to have gotten used to whatever my lungs are doing. Right now I'm not really having anything more than what seems like mild symptoms even though things clearly aren't what they should be when I look at the numbers. Maybe the extra ICS is helping? The pulmo doubled the steroid component of my seretide last month, so maybe that is what is keeping things relatively stable despite the low numbers?

    Hope you are feeling better soon, Butterfly.

  • So sorry to hear you are also having trouble. Never fear hyjacking my threads - I know it helps me a lot to hear how other people are coping. I also know how much it helps me to vent from time to time, especially when there is nothing to be ""done"" other than wait for things to get better or make yet another call to the GP. So you are welcome to both rabbit and hyjack :-)

    Thank you, that's why these forums are such a lifeline for me, a chance to discuss/moan/vent with people who understand. I don't know anyone with anything more than 'blue inhaler only -asthma' and they find it difficult to understand. mine is not severe, between flare ups I barely use my ventolin, and even when struggling, my attacks are rarely that severe but its just persistent and hard to control and that's what I find hard to come to terms with. I don't like being out of control of my body, and don't like having to compromise with the activities I do, two years ago I could run 10k I an hour on only 2 puffs of ventolin, today it takes 2 puffs to walk 10 m!! Even between flare ups I can't even contemplate running ;-(

    Anyway thank you again, and I'm glad the bonfires didn't cause trouble for you, hope your lungs pick up and you can continue your pred taper XXX

  • I think the ups and downs of asthma frustrate us all, especially when on a load of meds when it can be hard to understand and/or accept lots symptoms. Hugs to you xxx

  • I replied yesterday and my computer froze grrr so I lost it!

    Glad you survived the bonfires - I always end up going out for our Guy Fawkes night in November, despite the fact that cold air, smoke and walking around are really not a good combo - and I always regret it. lung-wise (not fun-wise). You re clearly more sensible than me...

    Glad to hear the Ventolin's working a bit better as well and that something may be keeping the symptoms down. What I was saying in my post that got eaten was that I know how you feel! I'm like Butterfly in that I get persistent if not massively severe symptoms which just drag on and on and though I have good periods I can't maintain them or predict when something will make me worse again. It is so annoying when you think you're doing better and then go downhill again, but it sounds at least like something is working to make this flare less of a problem than it has been before.

    I try to remind myself that I used not to have 'good' periods at all so at least there has been SOME change, but have to confess it's still very frustrating and puzzling re why sometimes the medications are controlling things (and I know it is them because I never used to have any good periods when not on them and when I had to go off them for tests last year I could feel myself sliding backwards) and sometimes they just don't do enough. My consultant is convinced I am on too much and what I have is 'more than enough', but actually sometimes (not enough) it's just right - like now I wouldn't want to try reducing unless I had a really long good period so i think I've got just the right amount - and sometimes it just is not adequate at all.

    Hope both you and Butterfly are feeling better soon. I'm going to go and talk to my GP this afternoon about what I can do: I'm happy I have some good PF/reliever use values to show him but on the other hand am worried he's going to say 'well, you're ok now...'. Really wish I had kept a proper diary last time I had a good period since then I plunged into a long bad (for me) flare. I suspect, though really hope I'm wrong, that this good period won't last but have little objective evidence for this, which I would have if I had similar high values from before.

  • I try to remind myself that I used not to have 'good' periods at all so at least there has been SOME change, but have to confess it's still very frustrating and puzzling re why sometimes the medications are controlling things (and I know it is them because I never used to have any good periods when not on them and when I had to go off them for tests last year I could feel myself sliding backwards) and sometimes they just don't do enough.

    I agree Philomela, why should they work sometimes and not others? And I seem to be on a relatively high number and dose of things for what can be very mild asthma, get other times, that coupled with oral pred still isn't enough?!

  • Well, i spoke too quickly. Yesterday had a flare that took 6 puffs over an hour and a half to quiet down, triggered by ""just walking"". Last time, extra 20mg last night (total 60mg for the day) and 60mg this AM.

    Yet it happened again today. I walked 10 minutes to a restaurant to have dinner with my husband, and fllared. But this time 2 puffs didn't help and my doctor told me I needed to go to A&E. because I shouldn't be flaring like that on 60mg pred.

    So here I am at the hospital. They are keeping me here overnight for observation. According to my husband, they also want to speak to my pulmonologist before they will let me go home. I hope he comes in early. (he also works at the hospital).

    I'm in an A&E bay rather than in a ward. Be interesting trying to sleep. There is lots of of activity and light. Good thing I can usually sleep through anything.

    Update: Funny thing is this AM I really was doing better than yesterday - even walked an *hour* with my best friend.

  • Aw no BETH, I hope its just a minor setback , take care xxx

  • Aw no BETH, I hope its just a minor setback , take care xxx

    Thanks. I hope so too. (see edit above - I didn't complete post when you posted)

  • Take care hope things improve

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