Prednisone roller coaster : Evening all... - Asthma UK communi...

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Prednisone roller coaster

Mark-f profile image

Evening all ....... I'm on my normal steroid roller - coaster as I like to call it, after tapering down form 40mg to my maintenance of 20mg ---- I'm now on day 5 and really struggling !! Wheezing,short of breath increase in sputum and generally feeling pants. Seems the humidity and or pollution also giving me issues !! 

14 Replies

Air and heat are killing me too, more at night when I trying to sleep 

I pray that you get well soon. If not then ring asthma uk helpline they are great

I have been on oral steroids permanently since 1991. How fast are you titrating down. I too take 20mg daily and put it up to 40/50 mg depending on severity. I take it for 4-5 days then titrate down 5mg every 3-4 days till I get to 25mg, I then use 1mg reduction till I get back to 20. Yes it can take time but it's better than it flaring up again. What other meds do you take

Mark-f profile image
Mark-f in reply to shirl13

Hi.... Taper by 5mg every 7 days as adviced but my consultant !! 

Current medication 

Fluteform 250 

Spiriva 

Ventolin 

Theophylline 

Lansoprazole 30mg 

Loratadine 

Montelucast 

Pred 20mg (maintenance)

shirl13 profile image
shirl13 in reply to Mark-f

Best thing of being on steroids is you have it there and can treat immediately. Have you had any side effects. I've put on weight, muscle wastage, osteoporosis, diabetes, refux. Currently take min. 20mg pred, phyllocontin, ranitidine, co-dydramol, tramadol, adcal d3, alendronic acid. Montelukast, atorvastatin, losartin, amitriptyline, salbutamol, atrovent, flixotide, lantus and novorapid

Mark-f profile image
Mark-f in reply to shirl13

Hi ...... Had recent dexa scan and results seem to be border line Osteoporoses!  I'm 44 so sure it will progress.  Been on 20mg pred for 18 months but to be honest isn't really enough, currently at the Royal Brompton having tests for comparability to start Xolair 

Hiya 

I'm exactly the same as soon as I go down in tapering, or stop within 2 days of being off them I'm back to square one, doesn't help that I have severe Allergic Reactions to them... 

I don't suffer with Hayfever( thank god) but the Humid Weather is really affecting me.

I am also still on that rollercoster! I am only 20 and have been put on alendronic acid to protect my bones from the steroids

Hi Mark sorry to hear you are unwell. I don't taper down until I'm well I had the advice from an Asthma Uk nurse and it's on the website I've done so before and it's never worked. You need to check you don't need antibiotics..I expect you know that already..a good bronchodilator helps but side effects bother me. I'm inquiring about buying l the Omron Micro air nebuliser. I'm tired thinking Asthma etc..

Good luck at the RBH 🌺🌷🌸

20mg daily as maintenence dose seems very high. However if they are not having the usual effect and you are feeling worse, then you really must go back to your gp. Have you had a hospital referral recently?

It could be worth asking your gp for a referral to a consultant who specialises in chest/lung medicine, at the very least after a battery of tests they can decide whether your medicines are correct or need changing.

Or in my case the consultant wanted me to attend A&E every time I was breathless so it was documented, nothing to do with my treatment, but because he could use the attendance figures as getting funding for medical trials for new drugs! I of course declined this generous offer!

Mark-f profile image
Mark-f in reply to

Hi I've been with various consultants Both at local hospital and am now at the Royal Brompton I have severe refractory asthma and copd .... Yes 20mg is high but for me it simply isn't enough I'm afraid ..... Waiting on tests to see if I'm compatable to start Xolair injections !!!

It's awful because I know the pred isn't a long term solution but ATM there really is no other solution and my consultant agrees !! 😵👎👊

in reply to Mark-f

20mg pred does nothing for me..bronchodilators do..the side effects affect my eyes but I felt better with the nebs than the evohaler so I m going to try the nebs again I think. I will have to ask for them. I need the courage to ask for them :))) he has said no a couple of times but with the ophtalmologist report maybe I can try again.

I am having the same problem but also just been told that I just miss the criteria to qualify for Xolair so not sure where we are going to head now!

I see Xolair is indicated for allergic asthma, to asthmatics who don't respond to H1 antihistamines that's like Piriton the one which makes you sleep, also to people who get urtica ..no it's not for me not if you have an auto immune deficiency etc..

loads of interactions with meds and not proven to be a more successful medication than what is already on the market..it's just expensive..

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