New here - Prednisilone tapering

[whisperit]

Hello all,

I have recently been diagnosed with an autoimmune connective tissue disorder with Interstitial Lung Disease

Since July, I have been on 20mg prednisilone, plus hydroxychloroquinine.

My consultant recently suggested tapering the prednisilone by alternating days at 20 and 15mg. His long term hope is to introduce mycophenalate and reduce the pred futher.

However, looking at the posts on the Lupus UK group, not only are the doses reported there much lower, but the tapering they describe appears MUCH slower - reducing a 5mg daily dose by 1/2 mg a week, for example.

Can anyone share their experiences of tapering prednisilone from 20mg? How to manage the process?

Thanks

[sassy59]

My hubby has sarcoidosis and started on 30mg of pred. He got down to 10 and the respiratory doctor at our local hospital wanted him to drop further. He is now on 5mg but that has been achieved slowly over time. He can't stop completely as he still has some sarc going on.

I do wish you well. Xxx

[whisperit in reply to sassy59]

thank you sassy59,

This whole illness came on suddenly a year ago and it has turned my life upside-down. Having to work out all the complexities of the condition, the treatments and is bewildering - there seem to be new challenges and questions every day, so I'm grateful for every piece of information I can get from people with more experience. I hope things improve for you and your husband x

[sassy59 in reply to whisperit]

Thank you whisperit and good luck to you. Xxx

[Six1]

I am on 20 mg of Prednisone since 2015 now tapered down to 1Omg a day

[whisperit in reply to Six1]

Thank you Six1,

Its so helpful just to know what other people are doing x

[MarieW-F]

When I was on 40mg I got down to 10mg very quickly in the way you describe, alternating then reducing. At 10mg it was much longer, tapering down by 1mg every couple of weeks, then an alternate week then dropping. But I was on it a year so it maybe that given you haven't been on it so long then there is less like;y there will have been adrenal glands issues.

Good luck.

[whisperit in reply to MarieW-F]

thanks MarieW-F,

Its good to have some confirmation about the method - and interesting to hear how the last bit was trickier than taking out the "top end" x

[AngieB72]

Hi

I have the same as you - I am now on 7.5mg a day. My tapering seemed more complex than that. It took about 6/7 weeks. First week was normal dose except one day reduced, second week two days in the week reduced, third week three days and so on. I was told reducing too quickly can be harmful. But if a doctor is telling you it must be ok, perhaps it's different at a higher dose. I've never been above 10mg that I can remember!!!!

[whisperit in reply to AngieB72]

Thanks AngieB72,

Blimey, this is getting complicated! (Don't know why I'm suddenly typing in italics!)

[Fennella02]

It has taken me 2 years to get from 15 mgs to 5 mgs and the last part is definitely the hardest and slowest and in fact the doctors aren't sure that the final push will actually be achievable but, if I can manage it, it will be 0.5 mgs every 3 months. X

[whisperit in reply to Fennella02]

Thanks Clareb67,

Hmmm...so it does look like the final bit is the hardest; I wonder why that is...?

[Hidden]

G'day Whisperit

My wife had IPF and was on both Prednisolone and Mycophenolayte.

The Pred was reduced from 20 to 5 over 1 year with the last drop (to 5%mg) taking the most time and there were no side affects.

I would strongly suggest that you follow your Dr's recommendations when thinking of reducing the dosage.

Best wishes

Will (Australia)

[whisperit in reply to Hidden]

thanks BurraboyEasty,

That's really helpful - there is so much to get your head round with all these treatments!

[O2Trees]

Hi Whisperit - there are so many different recommendations about how to reduce but I tend to just listen to my body - it will tell me if I go too fast by my getting breathless later in the day Ive reduced, and I just take the amount I've reduced by in the aft4ernoon which seems to works fine.

They worry if you do it too fast you will rebound but what is most important is the last 10mg - at this point the adrenals can kick in and cause problems, mostly causing breathlessness in my case. So I tend to first reduce by 5mg every 4 days down to 10mg - that bit's easy - then by 2 1/2mg oil i get to 5, then by a single 1mg every five days or bit more if necessary, changing to 1/2mg then 1/4 at the end. But any of these gaps can lengthen if i need them to. Ive told my GP i do it like that and she's happy, as long as Im not forcing anything. They worry that if you do it too fast you will end up being on pred again and taking much more than you need to.

The above works for me but then Ive ever only been on pred maximum of 6 weeks, very different to those of you who are tapering after years on pred.

[whisperit in reply to O2Trees]

Thanks O2trees,

That's really helpful. Getting the accumulated wisdom of lots of experienced people is really helping - I'm feeling a little less bewildered now....!

[Patriciapotts]

My diagnosis, like yours and I have progressed to mycophenolate (MMF) 500mg twice daily, my PRED. I have managed by reduction of 2.5mgs each time slowly, to now 10mgs daily which seems to suit my body fine.

Hope this helps

[whisperit in reply to Patriciapotts]

Yes, thank you, Particiapotts, that does help. It's really a morale booster to know that other people have been through similar things, and that they have found ways of managing.

[yasmeena]

hi, I am often on preds @ 40mg per day. When I come off them or reduce them I start by reducing by 5mg per week, ie 40mg this week, next week 35mg following week 30mg and so on, but when I get down to 10mg I then do it by 1mg reduction per week. I take them for problems other than COPD and I find if I reduce quickly my symptoms return and I am back on 40mg again. Just don't drop down too quickly. Hope this helps.

[whisperit]

Yes, it certainly does, thank you yasmeena. The more info the better!

[Budgie1954]

The problem is, the longer you are on steriods, then the longer it will take to ween of them due to the side effects you will get if you come of them too quickly

[Hidden]

Hi, it seems everybody's weaning off is different which would make sence as we all have different lung conditions going on. I was put on 40mg before xmas....end of January my Consultant and I thought I was getting no benefit from them so he started weaning me off them. He told me to go down to 30mg for 2 weeks, then 20mg for 2 weeks, then 10mg for 2 weeks, then 5mg for 2 weeks ....then none. All the best...

Ebony x

[whisperit in reply to Hidden]

thanks, that's interesting. Perhaps the much slower tapers are more necessary if you have been on steroids for longer? Hope it is all working out for you x