Thought I'd start a thread for anyone reducing or trying to get off the pred (I know there was lots on the old board about this).
I'm trying to get off it at the mo. Only been on since last Nov, and only low dose. It's kept my lungs ticking over pretty nicely. Tried to come off at the begining of the year, reducing v gradually, but PF was slowly going down too, and doc put it back up again. Saw another doc last week (also at resp. clinic) and he has me reducing again, but different protocol. Lungs felt it straight away, PF dropped straight down. I've given in today and put pred back up - and I KNOW I shouldnt do this unilaterally, but I've been signed off by consultant and dont have a GP appointment till next Monday, and am not bad enough to be an emergency.
Anyway, just wondered if other people have had any advice about reducing pred, other than to do it gradually! Like, have they been told before they start at what point to stop if they are getting worse? When to up things, and to what level? Or whether you just need to persevere and hope things pick up? Also, whether using ventolin on a regular basis while reducing would help? Am using it regularly now lungs are rough again, but didnt start off doing this, and wonder if it would have helped?
sorry as i cant offer much advice, but though i would add my frustrations about coming off the pred! since finding out i am pregnant it has become a lot more urgent to try and reduce it at least and thankfull so far im not doing too badly (although im still on 20mg!!)
im really interested to hear what everyone has to say about reducing the dose and as for the increase in ventolin use surely that is defeating the object because the steroids should be taken to control the symptoms and inflammation?!?!? humm.....
pred
hi i like so many others tried in vain to reduce after been on pred for a year each time i got to 15 started to get bad . but hopefully this tme i have cracked it with vent nebs . i done this in hospital under docs supervision but vent has none of the horrible side effects of oral steroids have now been put on high dose inhaled steroids but the y dont have as many bad side effects as the pred but am now coping with the joint and mussel pain asociated with been off pred but there is light at the end .
caroline
I have been on no lower than 20mgs for 4 years, all docs keep saying about reducing but at the first sign of trouble they put it back up then my new nice consultant did in hosp over 7 weeks with aminophyline cover, but got acute and my local upped to 60mgs again!!!!! Now on bricanyl pump for extra cover and dropped today from 25mgs to 22.5mgs and they let me out so i know tommorrow gonna be bad just got to grin and bear it i suppose, dreading the joint aches and pains and muscle spasms!! alll in the name of treatment hey!!
Well happy reducing, at least we got each other to moan too
Love Andrea xxxxx
Hi Ali
Have been reducing pred since December with help of con and gp, as realised the only way to stop getting 5 days 'crisis' courses (had 9 of those from April - Dec) was to go on it and reduce it properly and slowly. Got down to 20mg at 5mg drops and lungs started playing up, so I started using steroid inhaler and that helped. Got down to 10mg and getting panicky... but have perservered and now down to 2mg a day. I have been dropping it 1mg at a time, as I discovered 2.5mg too big a drop when you get down to 10mg a day. Have been taking 2mg x 5 days etc., just about to go onto 1mg tomorrow and would rather up dose of inhaler than go back through the side effects.
Have now realised I NEED the preventer so am using it every day, whereas before on Pred, I didn't need it so I didn't use it.. which might explain why I had to keep going back to get more..
As my gp says, everyone is different and reacts differently to reducing the dose... the consultant said slowly, slowly, slowly, so I went and got some 1mg tabs and the support of gp to 'see how it goes'. When I got to 5mg, I got really wheezy so I put it back up to 6mg for a couple of days, then down to 5 and was ok. I think that by doing it slowly you allow your system time to adjust and kick in its own corstisone production, it really does feel like weaning my lungs off the dependency, and I have some energy returning at this low dose (which was always the bonus of taking the Pred, energy!!). My gp describes me as a 'moderate' asthmatic, though it doesnt feel very moderate to me on a cold damp day!!
So tomorrow will be using inhalers like good little patient and taking 1mg.... also taking homeopathic remedies and new super wholefood diet - anything to get off the drugs!
all i can say from own experience is that controlled and steady reduction is the way forward once u've been on the dreaded stuff for any longer than 10 days.am down to 25mg and providing stablish pf will drop to 20mg on monday (fingers crossed)
dancing crow i'm rather surprised that you had stopped your regular preventer inhaler just because you were taking pred, never heard of it b4 as believe pred is an additional med used to bring asthma back under control not as a substitute. I hope therefore that your reduction will now go a lot better
hope everyone else is succeeding well in reducing their dosage
Dear surprised Scampy!
No-one explained to me what the preventer actually did and when I was first given it, it was after I had been given Pred when carted off to A&E. I hardly knew I had asthma then, just a long chest infection that got worse and worse. It took at least six months to come out of denial - after all, how can alternative 'healers' get so ill???!!!
Anyway, am being good patient now and reaping the benefits. Down to 1mg today and completely exhausted but ok apart from that. Yeah!
luv dc
Hey everyone, good to be able to 'chat' to others who are / have been doing the reduction thing. Oxanna, really feel for you, hope the reduction is going ok esp with your pregnancy. I am so lucky in comparison with most. I have only been on 10mg, which was pretty much keeping things in check, and also I really didnt get side effects (well, am a moody cow anyway, so dont suppose anyone would notice any difference with the pred!!). Have to admit I really, really would prefer to be on the pred than going back to the sort of instability I had last autumn. For sure, this way of doing it was def not a good idea!!! Even though I've stopped reduction, PF is still going down... Would be really good to keep in touch with how others are progressing - good luck to all!
Ali
Hiya all,
Well I'm finally having some success with the pred reduction! Have been on it for 8 months or so now I think and since my last hosp admission my cons are trying to get me off it altogether... to start with reduction went badly, think it was too soon and too fast but now, taking it a little slower than I'd originally been told (instead of dropping 5mg every 5 days which I've never managed but they still always tell me to try) I'm dropping 2.5mg at a time and waiting till I've been stable for 2 or 3 days before dropping further and it's working ! Got down to 12.5mg this week ! Soon to try 10mg ! (Have been told my hosp asthma nurse I saw yesterday though that will prob need 1mg steps down below 10mg) So finally I'm seeing that it is possible ! I do find that nebbing a little more when dropping helps though, I only drop further when I've also got the nebs back down to the same sort of levels as before I dropped the dose if that makes sense ?
I hope it's going well for the rest of you too... keep persisting, we'll get there in the end even if there are set-backs along the way !
P.S. does anyone else find that their skin feels as if it's bruisesd all over while they're reducing the pred ? I tend to get it for a couple of days a day or so after I drop the dose each time, very odd ! My fiance hates it as it hurts everytime he gives me a hug !
I have been on no less than 20mg of pred since April last year. Since an admission in Jan I was put up to 60mg which was the highest I had been on. My consultant suggested reducing every other day and at one point (about 3 weeks ago) I got to 60mg one day and 25mg the other. I was feeling terrible, I was dizzy, feeling sick, falling over and as for what my lungs were doing was nobodys business!! During this time I spoke to Debbie at RBH about my planned admission and she was gobsmacked as to what he was doing and suggested I stay on the total dose i.e. 85mg over two days but try and squeeze the dosage together again. She wasn't surprised that I was all over the place! I have done this and now am beginning to feel a bit better. Well the stranger symptoms have gone anyway but have managed to pick up another infection so am nebbing a lot more and antibiotics to add to the concoction. I had heard that it helps to up the nebs a little whilst reducing the pred and that did work. Just hanging on now for next week to see if RBH can come up with some sort of protocol to get me off the wretched things once and for all!! Am a little frightened as every time the pred gets towards 20mg I seem to end up back in but fingers crossed!!
Foxy xx
back up to 40mg
bit down about it, really thought I'd started to get on top of things, so its a shock to realise how much those little tablets were doing. Of course it doesnt help that lungs feel like they are stuffed with brillo pads, and I dont have the puff to do anything - grrr .
On the bright side, now have prescription for a load of 5mg and 1mg tablets, so once over this blip can cut down according to what I feel is working
will v. likely be back for advice on that though!
hope everyone is having a good Monday.
i'm off, i'm off!!!
haven't had any since last thursday!!! and i'm alive and everything!
i even nearly slept properly last night, for the first time in over 2 months.. i feel so lucky that (touch wood) the cutting down seems to have worked. hopefully it'll be a nice long time till i need any more.
good luck to everyone who's still cutting down, i hope it goes well for you all
shhh don't tell anyone but I have gorn down by 5mg please please don't tell the lungs they are just about coping and you all know how much I hate set backs!
Bex
3 weeks off
hi all havent posted for a while been so bad with these joint pains frpm been off the pred . my fingers are so bad i cant open a can or unscrew a bottle am at my wits end . had afew scares and was going to go to doc but pulled through with vent nebs so still going strong cant believe im off them for 3 weeks now so heres to the next 3 and dont despair anyone still tryn we have all been ther . luv to all
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