Prednisone/ breathing difficulties

Does prednisone cause breathing problems? My husband has RA plus breathing difficulties, he has been on 20mg / 30 mg for three years. Last year he was hospitalised with pneumonia, they increased to 30mg then. He has weaned himself down to 20mg a day. Doctors differ in their opinion, one will say its for the RA another will say it’s to help with breathing?? Can’t get any clarification on this. Also every time he tries to cut down below 20mg he’s ill, makes it difficult to come off them.

[medway-lady]

I'd urge you to ring the ra team as we are not medically qualified and breathing issues are no doubt very worrying at this time. I hope you find an answer soon. x

[Hidden in reply to medway-lady]

Thank you,

We’ll try.x

[springcross]

Hi Jimijames. I don't know if you're interested but I copied a steroid reduction plan from the PMR site a while back. It's a longer withdrawal but I think it works very well if I remember the posts correctly.

[Hidden in reply to springcross]

Thanks, yes, I’ll try anything to get off these steroids within reason

[springcross in reply to Hidden]

It's a bit long-winded and I hope I can get it all on.

Dead slow and nearly stop reduction plan

PMRproModerator•

5 years ago•68 Replies

I have been asked by two or three people on another thread about this reduction. Because of the way this forum works I thought it was simpler to just start a new thread so it is obvious where it is - I've posted it several times already but there is no real way to find it again that I can see. It is long to try to make it understandable - those of you who use word processing will be able to copy and paste it into a file on your computers to read again and again.

"Reducing pred: dead slow and nearly stop"

In an attempt to make this reduction scheme available more simply to the people who request it I am posting it here where it can be found easily. I hope no one minds but I have copied and pasted it what feels like dozens of time!

"A group of us worked out reduction schemes individually that have allowed us to reduce far further than ever before but they are all basically the same - and they were based on a scheme a Swedish gentleman worked out when he simply couldn't get below 3mg without pain. Img at that level is 33%, 1/2mg is 17% - way above the 10% that has been recommended for years. So he used table to see the daily doses and took the new dose on one day, old dose for a few days and then proceeded by repeating that and then reducing the number of days of old dose - until he got to everyday new dose. It worked, he got off pred and has been off pred for at least 3 years (it could be longer). Something similar to mine is being tried by a consultant rheumatologist in the north of England and he too finds it works for every single patient he has given it to. As it did for several ladies beforehand.

My reductions are VERY slow. I use the following pattern to reduce each 1mg:

1 day new dose, 6 days old dose

1 day new dose, 5 days old dose

1 day new dose, 4 days old dose

1 day new dose, 3 days old dose

1 day new dose, 2 days old dose

1 day new dose, 1 day old dose

1 day old dose, 2 days new dose

1 day old dose, 3 days new dose

1 day old dose, 4 days new dose

1 day old dose, 5 days new dose

1 day old dose, 6 days new dose

By that stage if I feel OK I feel safe to go all new dose. I suppose you might be OK starting and stopping at "1 day new, 4 days old" but I was terribly sensitive to steroid withdrawal pain so I err on the safe side. Once you get to the "everyday new dose" - if you feel OK you can start on the next reduction, no real need to spend a month at the new dose.

This avoids steroid withdrawal pain - which is so similar to PMR pain that you often can't tell which is which and some of us suspect that many flares are NOT the PMR returning but problems with steroid withdrawal. Using a scheme like this also means you can stop immediately if you have any problems - you might be fine at one day old dose, 2 days new (lower) dose but not at a 3 day gap - but you have dropped your dose a lot and that is the idea. It also isn't as slow as you would think - you can reduce at a rate of about 1mg/month on a continual basis.

The Bristol group start new patients with PMR with 6 weeks 15mg, 6 weeks at 12.5mg and then a year at 10mg before continuing the reduction and that achieves a far lower rate of flare (20% instead of 60%) and I suspect their flares then come below 10mg as they then do the 1mg at a time reduction. Just below 10mg is a common dose for people to get stuck at - and I (and others) believe it is because even 10% drops are too much for many patients. These patients are then labelled as "steroid resistant" or told they need methotrexate to help them reduce but we have seen this slow reduction work for those patients too. We believe that methotrexate (MTX) works for patients who have late onset rheumatoid arthritis (LORA) or LORA and PMR together. Very few patients get off pred altogether when taking the MTX - those who do are probably the mis-diagnosed LORA patients - or another arthritis that responds to MTX.

When you are at doses below 5mg it is a good idea to rest at each new dose for a month at least before trying the next reduction. At this point you risk overshooting the dose that is controlling the inflammation so waiting a short time to see if symptoms reappear is helpful. If you just continue there is a possibility that you get to very slightly below the "right dose" and inflammation will start to reappear very slowly. The blood tests will lag even further behind the dose reduction - there must be enough inflammation to increase the proteins being measured for the blood tests to rise.

Contrary to the beliefs held by many doctors it is NOT a race to reduce the pred dose. Doing that will lead to flares, needing to go back to a higher dose and starting again - and the end result is you took MORE pred than if you had reduced more slowly.

Last edited by PMRpro Moderator

Related Tags

•blood tests

•methotrexate

Forget 7 days in the week. You are just taking the new dose for 1 day each time but getting those days closer together.

Take the new dose for 1 day, then take the old dose for the next 6 days.

Take the new dose for one day, then take the old dose for the next 5 days.

Take the new dose for one day, then take the old dose for the next 4 days.

Take the new dose for one day, then take the old dose for the next 3 days.

Take the new dose for one day, then take the old dose for the next 2 days.

Take the new dose for one day, then take the old dose the next day.

Now you are at one day old dose, one day new dose.

Take the new dose for 2 days, then take the old dose for 1 day.

Take the new dose for 3 days, then take the old dose for 1 day.

Take the new dose for 4 days, then take the old dose for 1 day.

Take the new dose for 3 days, then take the old dose for 1 day.

Take the new dose for 4 days, then take the old dose for 1 day.

Take the new dose for 5 days, then take the old dose for 1 day.

Take the new dose for 6 days, then take the old dose for 1 day.

And then you can embark on every day new dose!

Many doctors say that when you have a flare it is a good idea to have a few days at your present dose plus 5mg - so for you that would be a few days at 10mg and then drop to 7.5mg and then start your slow reduction again. I did that recently and it really worked very quickly but I didn't drop the dose until all the niggles had disappeared.

Never accept "your results are normal", especially from a nurse but doctors don't get it right either. Ask for the figures and keep a note in a diary - if you have a mathematical mind, draw a graph of the readings so you can see what they do. Make a note of colds, accidents, stress - and see if there is a pattern. There often is.

[springcross in reply to Hidden]

If you try this, although it would be down the line a way, I would be interested to know how you got on.

[Hidden in reply to springcross]

Thank you so much for all of this info! My husband is desperate to come off the steroids so he will try this and let you know how he gets on. Once again thank you.

[springcross in reply to Hidden]

You're very welcome. x

[jenn72 in reply to springcross]

yeh it would be a reducing does with steroids. i know when people get a chest infection they often get steroids and antibiotics for 2 weeks. does he have an air combuster for saline nebulisers? id get medical advice for sure. its good to sit upright and walk about as much as possible lying down means the bacteria sits in the lungs.

[springcross in reply to jenn72]

Hi. Did you mean to reply to Jimijames?

[jenn72 in reply to springcross]

yes lol sorry xx

[Hidden in reply to jenn72]

Thank you for your advice.xx

[Hidden]

Hidden I am going through this at the moment and my RA consultant put me in for respiratory clinic and lung ct scans. Lungs not real change when scan done but clinic this Friday as very wheezy on chest and I was not like this pre RA.

So ask your RA team if they can get him in to respiratory clinic. Just keep talking to the RA team it took me 4 months of keep saying I don't feel right on chest.

[Hidden in reply to Hidden]

Thank you, I don’t think he’ll be seeing the RA team with everything that is happening at the moment

[Hidden in reply to Hidden]

Call them they won’t mind they know they have to keep things going with others too .