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Anyone on a maintenance dose of steroids?

11 years ago•21 Replies

Hi, my gp has suggested a maintenance dose of steroids, taking a few (don't know how many yet) every day. Whenever I have steroids I improve so much for a couple of weeks afterwards and then rapidly go downhill again. I'd be grateful if anyone can let me know if a maintenance dose helps them or conversely whether it doesn't. Side effects or not. I don't normally have any side effects from a usual course, 6 a day for a week then gradually decreasing which can take another week or two. Thank you! Andy

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21 Replies

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initial11 years ago

Sorry Andy, I had been on them since the new year when I had pneumonia, but have slowly been taken off them. I have noticed though, that my breathing has gotten worse, and have been very sob over the last few days. If they help you, then I'm sure your medical team will weigh up the pros and cons before prescribing a maintenance dose. Take care x

Riverbank11 years ago

Sorry I can't help you but I'm sure someone will be along who can.

Jambo11 years ago

Hi Andy.I've been on three a day for a while now.they certainly help,the biggest problem I have is sleeping,always used to sleep ok until started on the steroids.now every nights sleeping on and of,waking feeling really anxious and on edge.

Good luck with them,I hope they help if you do have them

Jambo.

kimmy5911 years ago

Evening

I had Pneumonia last June and had infection after infection, my consultant has put me on a maintenance dose of antibiotic Azithromycin I take one 500mg three times a week, since December I feel much better. I know it doesn't stop you getting all infections but it helps.

Kim

Chris311 years ago

Hi Andy. I've been on steroids for well over three years now. I can't say I like taking them but they are doing something for me. If I have an exacerbation they get increase. As from yesterday I am down to 5 mg again and I don't have any real side affects at that level.

andymb11 years ago

Thanks for your replies everyone, I think I'll order the experience Chris3 has of them (if only!) and also a glass of whatever she's drinking in her picture! Thanks again to you all. Andy

lynntim11 years ago

Hi Andy, yes my GP has agreed to me staying on 2steroids a day indefinitely as from last week when I just finished a 2wks course of antis + steroids I think the reason doc's aren't keen it can cause `brittle bone`and osteoporosis !! Good luck. X

knitter11 years ago

Hi, andymb, I have been on a maintenance dose of 5mg for years now, increasing when I have an exacerbation. I have the usual side effects of the round face and tum, and have to take alendronic acid and ad cal tablets to protect my bones. You should carry the steroid warning card with you.

The BLF helpline should be able to give you more information

tigershay111 years ago

Hi i am on maintenance of 10mg have been since end jan since having pneumonia and chest infec since before xmas. I also up them if feel something brewing . Waiting for results of scan so they may change again . My daughters been on them since she was 12 shes now 23 and has the injection form now she had no real probs except her bones she now has that big prob of having osteoperosis early but shes very upbeat and lives her life to the full x judith ..ps definetly need a medi card to alert medics you are on them

TEDTHEBEAR11 years ago

What a brilliant post Andy a good question.

I have been on a manintenance dose for 2 years now. They do make the chest infections come less often now. I do think its down to the individual person though re side effects. Some people find it makes them feel better both mentally and physically others feel no different. I think its one of those things you need to try and see what happens to you personally.

Chris311 years ago

I quite often raise a little glass of fizz to my good friend Pred! The picture was taken just off Red Square so it's a little Russian number. My husband and I went on the Trans Siberian. I couldn't have done it with our the steroids. My moon face subsides round about 12.5mg. When I saw my consultant on Monday it was music to my ears to be told I would be on them indefinitely. That's me with a future. He also told me to book a holiday! More fizz.

fishtail11 years ago

I take a maintenance dose of prednisolone steroids,have done for a couple of years,I do find they keep me ticking over nicely,so no complaints.

andymb11 years ago

Thank you, last 6 posters (I already thanked the others!). This is sounding more and more possible, although I do have osteoporosis (I know, usually associated with women, but not uncommon in men). Do I choose breathing or crumbling away if I am offered these permanent steroids?! I do have treatment for the osteo though which seems to have slowed it down somewhat. Maybe I'll be booking that hol with you and your hubby Chris! Thanks so much everyone, has given me hope that things could maybe improve a bit in the future. Andy

apothecarry11 years ago

Hello Andy, sorry that you are so unwell that GP suggested putting you on maintenance of oral steroids. I have brittle asthma and am on very high dose inhaled steroids with oral courses when required which is quite often, we have to reduce them over about a month or I stop breathing again. What you need to think about is the long term side effects, in my case I am still alive 18 years later so have lived to see the side effects which I wouldn't have done otherwise, unfortunately the major side effect is iatrogenic cushings disease so now I weigh more and although I only eat 1400 calories a day it is a battle to stop more weight increase, it has caused major muscle wastage so I cannot walk or do as much without passing out because of the cushings instead of being the asthma, it is said they cannot reduce the steroids cos I will drop off my twig but if we dont, I become bigger, weaker, less fit so the asthma gets worse and guess what? - yup, I drop off my twig! Am hoping that Heartlands hospital will try some other drugs which allows reduction of steroids but even if this happens will need oral steroids to cover. In fact if anything happens from a filling in a tooth to an infection I have to have oral steroids to basically prevent death. This is not a complaint, it is merely to inform you that you have to weigh up the here and now with what could happen in the future as the literature states that only 1 in 50000 gets cushings. Best of luck with whatever you do and I hope that you feel better soon.

andymb11 years ago

Sounds awful doesn't it tumbledown, humbles me when I read of people so much worse off, particularly when it's through no fault of their own, Andy

apothecarry• in reply toandymb11 years ago

No need to be humble old bean, in many ways life is a bit of a shit but I am very lucky it has put a lot of things into perspective, I am still here, I enjoy everyday and do things which maybe I shouldn't but what the hell I may be dead tomorrow, I do not worry unnecessarily about the future, I take great pleasure from little things like the beauty of a sunset, a gnarled tree, music is always on, I have got lots of hobbies which if I worked full time instead of part time I wouldn't have found out. What ever is the matter with anyone, you can always improve the quality of life by altering the way you look at it and changing the things that you can alter. Live life to the full, leap hard and fast off your twig don't just fall of it!

11 years ago

My husband was diagnosed with IPH two&half years ago . As this is not an auto -immune disease the consultant said there was no point in him taking steroids . This is a very rare lung condition & very little is known about it - however the consultant at our local hospital decided to try him on low dose Prednisolone - 6mg daily & this seems to work with no side effects . He does have a Home Rescue pack - Claryromycin/Amoxycillin & Prednisolone 25mg for use in case of an exacerbation but only had to use this twice since diagnosis . Like knitter he also has to take Alendronic & Calcichew . We do think that in his case being on low dose daily helps .

Hollyhockhattie11 years ago

Hi Andy.... I am on a maintenance dose of 10mg daily and it works very well for me. I've gained much needed weight, no chest infections for 5 months now, am breathing well ( no SOB) and feel well overall. To be able to play with my grandchildren in the park ,walk the dog , do my garden and not feel like i'm struggling for air is so amazing The only downfall is that I have to remind my self that i'm not cured and keep up with my regime. No side effects so far apart from the weight gain. I have bronchiectasis. All the best to you. Holly

andymb11 years ago

Thank you everyone for taking the time to reply. Is a mixed bag of reports but I think, on the whole, I would definitely give them a go if the team decide I can have them. Anything's got to be worth a try the way I feel sometimes! Andy

jimmyw12311 years ago

yes a great post andy,,, brouhgt a smile, im sure chris will have a smile too.

hi andymb,,,i have been on almost continued steroids for approx a year, i really didnt know that this medication is great, but should def, not be messed about with [not that i am suggesting that for one minute in your case.] i am now undergoing, at my request, a programme by my gp, to cut these down, this has taken 10 weeks , i am now on 15 mg per day, and in 10 days time , hopefully be either off them on or a maintinance dose [yet to be decided] of just 5mg per day,, hope this helps, im sure every case is different,, kind regards ,,jimmy

p,s waiting on dexa scan.

bobhc3218 years ago

I have severe lung problems, many years working in heavy industry, dust and asbestos have shut down over 54% of my lungs. Have been taking Prednisolone on and of for a few years but because the pharmacy put 20mg in the morning and 20mg in the evening I was not getting the full benefit, until district nurse told me to take all in the morning, immediate affect, couch up daily mucus stopped, could walk more than three paces before stoping because of chronic breathlessness.

Will be starting a maintenance dose tomorrow, if you want to walk up stairs and in to the bed room with out gasping for air take the doss. I can not believe the huge difference the steroids have and will make. Some have said they do not like taking them, I don't like doing fish out of water impressions.

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