At the end of last week my doctor proposed that I stay on 40mg of pred for another few weeks, possibly up until I see the pulmonologist at the end of February.
We discussed this further today.
He's not exactly excited about the idea and neither am I, but we both agreed that it was a question of trade-offs. But this begs the question, what trade-offs made long term use of pred worth the side effects? How bad does asthma really have to be to justify it?
I tried googling for articles, but couldn't really find anything that got beyond the general observation that benefits must outweigh costs (duh). Obviously if one's asthma has a life threatening pattern, then pred side effects clearly take second fiddle to staying alive. But what about when asthma is severe, but not life threatening?
During the last three months I've been on oral pred three times: the first two times were short courses with no taper. Both time, I ended up flaring. This third time we tried to get me off pred with a taper, but that stopped working at about 20mg when peak flow down shifted significantly and again I began flaring.
Flaring for me means moderate to borderline severe attacks that happen every four to seven days with lots of more mild symptoms in between. So far all of these have been turned around with lots of nebs (someimes as frequently as every two hours) and not much more, though I'm usually worse off for several days after.
Also it seems that each time I go through a run of flares, my “best” peak flow seems to drop and never quite rises back to what it was before. Maybe I just keep aggravating inflammation and making it worse?
In our discussion today I tried to propose that since even all that reactivity just really uncomfortable and not life threatening that maybe I could do without the pred. He didn't buy it, saying “you've got to breathe”.
Pred doesn't fix things back to healthy so far, but on the other hand, I'm not very functional at all, if I'm flaring with that regularity. The pred does seem to hold back the level of reactivity so that I can get at least a few things done without having to stop what I'm doing and go home and rest.
Also pred seems to make a big difference in whether ventoline helps and for how long. During the pred free period just before pred trial #3 ventoline basically only made a real difference in symptoms during a small window at the top of the dosage curve (1 to 1.5 hours post neb). Once I went back on pred, within 8 hours or so there was a really noticeable difference: ventolin actually started working again right after I took it and it lasted a lot longer.
So I'm wondering, is long term pred really worth the side effects? Am I buying time now to pay later in the form of bone problems or other side effects?
How do you decide whether the side effects of pred are worth what they accomplish?
I think that one possible problem of not taking the pred is that as you seem to say its only just bprderline to becoming life threatening attacks wich i suppose could happen if the pred wasstopped.
Also its a very personal thing. Not everyone gets all side effects. Ive been on pred for 6yrs non stop mow. My main side effects are predsomnia, secondary diabetes, thinning of the skin and of course the dreaded weight gain and moon face. But ive never hadbone problems so i suppose its not always a=b for everyone.
Also hopefully the cons when you see him will have other.meds to offer that can help with tapering the pred. Singulair has helped many in this respect. My wonder drug was terbutaline pills.
All the best
rose xx
Hi Beth!
I've been on pred permanently for just over a year now but had lots of short courses for.a.couple of years before that.
The side effects are pretty horrible but as my husband says its better than the alternative!
Can you perhaps try tapering down to a lower.dose (with your cons agreement of course) that your lungs can cope with as staying on 40mg is quite a high dose. You mentioned you managed until you got to 20mg, maybe this is your pausing point until your appointment in February?
The problem with asthma is you never ever know when its going to decide that today is the day its going to throw a major strop.
I'm now.taking cyclosporin as well as pred as a steroid sparing drug in an attempt to get off the pred due to the severity of the side effects for me so being on them for a while does not.mean you have to.stay on them. Saying that all alternatives have serious side effects so it really does come down to you deciding whats best for you.
Hope my rambling helps a bit! Lol
X
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Can you perhaps try tapering down to a lower.dose (with your cons agreement of course) that your lungs can cope with as staying on 40mg is quite a high dose. You mentioned you managed until you got to 20mg, maybe this is your pausing point until your appointment in February?
Angelica – we tried a taper but had to abort it. 20mg wasn't stable at all. Actually the problems started back on the last day of 30mg. I had a good morning but in the early afternoon I just sort of wilted. My peak flow dropped about 50 L/min and nebs would only bring it back up for about three hours.
Since I had four really good days before that, we treated it like a one-off and continued the taper. But my peak flow never really recovered from that. By the end of the week my pre-neb peak flow on the day I wilted was now my post neb peak flow at 20mg.
So we went back up to 30mg. but that very same day I had a really bad attack which pushed things back up to 40mg. We were hoping to taper again after four days, but on day 3, another big flare-up. So then we decided to extend 4 to 7. There weren't any more big flares, but the day to day wasn't improving either.
Long story short even after 11 days on 40mg I haven't been able to reproduce the peak flows, reduced ventolin usage and freedom from symptoms on the four good days over two weeks ago. I'm nowhere near the level where I could even contemplate a full day of work. I survived a half day out doing errands for an up-coming trip yesterday, but paid for it heavily today. No flares – just one long day of irritated lungs and sore abs that ventolin only partially helped with.
I've been wondering this too. No one has suggested I stay on pred. permanently, but I seem to be sliding into it!
I've taken three or four courses of steroids a year for about 7 years, and then a few years ago got diagnosed with psoriatic arthritis as well. So since last Fall have been on some dose of pred. for about 6-7 months. This Fall I started on 20 mg. for two weeks then 10 mg. for arthrits, but had to go up to 40 for as asthma flare. Then a month later when that calmed down couldn't just go off the pred. of course.
Then right now after being off of 5 mg. pred. for about 3 days had to go back on 40 pred., then up to 60 after going to the ER.
So I'm starting to wonder if maybe it would just make sense to stay on 5 mg. instead of all the crazy high doses?
I do get all kinds of side effects, but without it the side effect is I can't move very well, and there are all kinds of things (like walking outside) that are very limited).
So I know what you mean. I don't have a good answer either. But my asthma control at the moment is rather difficult, as the asthma seems to get in the way of many things I'd like to do.
And I figure at least they can monitor for the side effects, if the medication is necessary. And even help me prevent some of the problems.
My rheum. said they are working on making a steroid without pred. side effects. Wouldn't that be nice?
Bee
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I've been wondering this too. No one has suggested I stay on pred. permanently, but I seem to be sliding into it!
Same here. I've recently started Uniphyllin to try to reduce the amount of pred I have. And like Rose I found Singulair reduced my symptoms quite a bit. Sorry, I'm not being helpful, but hopefully when you get to see your pulmonologist you'll have a few options of things to try.
Lou,
How are you on the uniphylline? I've heard it can give you really bad headaches and nausea?? Hope you are ok on it!!!
I was supposed ti have started this a couple of weeks ago but my cyclosporin had to be increased so my cons didn't want to start a nee med while doing that
Angelica I have huge problems tolerating theophylline and get toxic levels at low doses with splitting headaches like I've never had before. Im now only on 60mg slow release twice a day (five year olds dose).
How are you getting on with the ciclo?
Lynda
Beth, what are you on apart from the pred and ventolin? I'm assuming something - several things - as no-one would jump straight to all that pred without trying other things first! But people have been mentioning things like Singulair etc, so then I thought, maybe you aren't on those?
I have been lucky enough not to have needed much pred - well, I don't think I have, though it may be that because I had a long period where I didn't have a diagnosis and was being told it was in my head, I might have needed it but didn't have it - plus for some reason at first the steroid things didn't seem to be working so well; luckily they are now.
The point I guess I was trying to make though is I don't know whether more recently I just haven't needed pred, or whether I have actually managed to hit on a combo which massively reduces the need for it (Atrovent, Ventolin, Symbicort 400/12 twice 3x day, montelukast). Having said that, I was given a relatively big dose in October while on all of that; I had a flare-up with an infection but also my old cons thought it might help if I tried to 'hit it' hard with a few weeks of steroids. I think it has helped, though it may be something else as well.
This is a bit confused, but thought it was worth mentioning in case it gives you any ideas.
Angelica- I was wondering if you'd started yours yet. Started my Uniphyllin last week and so far shakes have increased, have various abdomen aches, feeling nausious and feeling anxious (totally unlike me), but maybe it's the worry of finding it hard to work (or do much else) atm. I've never been off work from side effects of drugs (pred) until last week, always naughty lungs or other illness before that and I'm finding it hard to get my head around having to take these trade offs. Trying to find a way to settle the nausea and tummy aches by experimenting with how I take the tablets, it says to take with a glass of water, but I've added different foods to try to ease things. I can put up with all of this tbh if it reduces the amount of pred and its nasty side effects.
Hope the cyclosporin is helping. x
Lou, the consultant told me to always take Uniphyllin with plenty of food, as its notorious for nausea and vomitting, the food really helps (not just a mouthful of something, but a reasonable amount, i.e. bowl of cereal min).
Lynda
Lou,
I was thinking that I've never tried theophyline. I think it can speed up your heart though too? And I have a pacemaker actually, so albuterol/leverbuterol is about all I can handle! So that's probably why they've never brought it up.
Beth, I also take methotrexate for the arthritis. It's supposed to be steroid sparing as well. I hated the idea at first, but after going up on the dose, and taking the right amount of folic acid, it works really well for me. I don't really get any side effects, other than my hair is a bit thinner. And the day after I take it I'm in much less pain.
I know you're taking the cyclosporin for a different reason, but just wanted to say there is hope. And I think drugs like mtx. and cyclo. can take a while to kick in (like a couple of months), and then with mine they doubled the dose very slowly as well.
So hang in there! And here's hoping if you need pred. for now, it won't be forever. That's what I'm hoping.
Bee
Lou, I hope those side effects lessen, they sound like my first few days on the cyclosporin as Lynda says, eating with the it may help, it certainly has me with the cyclosporin.
The cyclosporin seems to be helping a little bit now the dose has been doubled and but I have got worse tremors (very noticeable) and I get water retention and headaches every now and then but tolerable if it helps, I know I need to give it time
The work thing is really tough, I had to.give up my management role in March last year which I loved as I wasn't able to keep up with the role because of time off etc and now I've been off work since October as so huge hugs, its tough xxxx
Lynda- the last few doses I've taken with a reasonable amount of food and it seems to have helped a little. I'm finding that I need a smaller portion for my evening meal than I'm used to, else the nausea will be worse, so eating smaller portions but eating a little more often.
Bee- My heart rate is maybe a little bit faster, but not really noticable. Much more noticable was my increase in Seretide a few months ago to 2000/200 per day.
Angelica- I'm glad the cyclosporin is helping. Hopefully both of us will suffer less side effects as we get used to our new drugs. The work thing is tough, but I know I just have to take it one day at a time/one week at a time. I missed work today, but will go tomorrow. If I'd worked today I wouldn't have been able to get out of it part way through the day, but is more escapable tomorrow if my body is not cooperating.
Philomena - singular was one of the early things added.
hopefully when you get to see your pulmonologist you'll have a few options of things to try.
That is the hope. This current level of pred is really only until I see the pulmonologist (or some major improvement in symptom level). Then my doctor is hopeful we'll find something that will reduce or eliminate the need for oral steroids.
But it still had me worried because the pulmo visit is still a month off.
I do get all kinds of side effects, but without it the side effect is I can't move very well, and there are all kinds of things (like walking outside) that are very limited).
That's a good point, that functionality matters and at the end of the day may be worth side effects.
Hello tis me again!
I think that one possible problem of not taking the pred is that as you seem to say its only just bprderline to becoming life threatening attacks wich i suppose could happen if the pred wasstopped....
Also its a very personal thing. Not everyone gets all side effects. Ive been on pred for 6yrs non stop mow. My main side effects are predsomnia, secondary diabetes, thinning of the skin and of course the dreaded weight gain and moon face. But ive never hadbone problems so i suppose its not always a=b for everyone.
You again Whether or not it could become life threatening is speculation. But you are right that the main reason I'm still on pred is because (a) we don't know what would happen and the risks are there (b) there is a sense that even if the pred isn't solving problems, it is preventing them. If it weren't so we'd have just continued with the taper. What's the point of using a drug that isn't doing anything?
As bad as things are right now they'd probably be a lot worse if things went back to ventolin not working right away, both in terms of quality of life and risk. Increased reactivity + longer and longer acute phase of flare-ups + ventolin not working quickly + only partial response to steroids isn't a great combination to play around with.
The frustrating thing is that sometimes pred has made a huge difference - it was like night and day when I went from 0 to 40mg in December. Maybe it will work to reduce the overall symptom level this time but just not as fast? Maybe, it is just a matter of giving things time?
Thanks too for pointing out that side effects vary from person to person. I shouldn't allow myself to fall into the trap of assuming the worst. Although that makes the whole tradeoff question messy too because one is really trading off one risk/unknown for another. There are no neat equations here. It would be a real shame to be minimally functional for fear of a side effect that isn't mine to have.
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But it still had me worried because the pulmo visit is still a month off.
Thanks too for pointing out that side effects vary from person to person. I shouldn't allow myself to fall into the trap of assuming the worst. Although that makes the whole tradeoff question messy too because one is really trading off one risk/unknown for another. There are no neat equations here. It would be a real shame to be minimally functional for fear of a side effect that isn't mine to have.
A month is a long time to wait when you're on a high dose of pred. If you're back from the US before that, would it be worth phoning Pulmonologist to try to move the appoinment forward.
I agree. The whole side effects versus benefits trade off thing is quite complex, as side effects vary from person to person, side effects also vary over time, are often worse when you start and can settle, there's no predicting the long term effects on your own body, and you often don't quite know how much the drug is helping or how you'd be if you weren't taking it.
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as Lynda says, eating with the it may help, it certainly has me with the cyclosporin.
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