Prednisolone taper tips: Hey everyone, I'm looking for... - NRAS

NRAS

32,131 members39,210 posts

Prednisolone taper tips

snotts profile image

Hey everyone, I'm looking for any hints, tips and tricks you have for tapering off the delightful prednisolone.

I'm 4 weeks in to a 6 week taper and I've just gone down to 10mg. I am EXHAUSTED. Like glued to the floor tired.

How can I get my adrenal glands back into gear?

Thanks!

26 Replies

I wish i knew. I am on 5mgs and h ave been for a while now. xxx

snotts profile image
snotts in reply to sylvi

It's tough isn't it. Hopefully the good people of the NRAS HealthUnlocked forum will come through with some great tips

It will depend how long you’ve been on it as to how you taper off. I assume your rheumy has given you a plan? Speak to them if you have concerns as you may need to taper slower.

Very slowly is the answer. I was told by my consultant to drop by only 1mg per month once I had got to 10mg. You don’t say how many mg you have dropped from to get to that but it sounds as though it may have been too big a drop for you.If for some reason you have been told to get off it completely after another two weeks I think you may find that difficult and should ask your Rheumy if you may take longer.

What you could try is alternating between the previous dose and the lower dose several times then drop to only the lower one. I had to do that to get below 5mg and take it very slowly as I said above.

Good luck

Stowe profile image
Stowe in reply to Lolabridge

That what I did with mine when I got to 5ml, I thought I was never going to get off them.

Bacharia profile image
Bacharia in reply to Lolabridge

I dropped by 5g a time until I reached 5 mg, but those last 5 had to be reduced very slowly. It took months and I alternated as several people have said on here, alternate 5 and 4 for two weeks, then 4 for two weeks, alternate 4 and 3 for two weeks etc. Do what feels right and you will get there, but expect it to take months. Sometimes you have to go back up a little, depending on how you feel. Sending best wishes.

Hello, oh I l do feel for you, I remember having to very slowly come off prednisolone, not nice, I spoke to my consultant as I felt very tired whilst trying to taper, he told me to take longer, I think I reduced mine every 2 - 4 weeks depending on how it was going, I slowed it right down when I got to 5ml, slowly slowly, I wou,d suggest speak to your consultant for advice. Good luck.

I'm down to 6.5 mgs per day from 20 mgs.In the past few weeks I have been reducing by 0.5 mgs one day then back to the original dose the next, alternating days ...

So:

Day 1 - 7mgs

Day 2 - 6.5 mgs

Day 3 - 7 mgs

Day 4 - 6.5 mgs

And so on for around 10 - 14 days.

Then stick with 6.5 mgs for a week or so ... time to feel a wee bit better.

Then back again

Day 1 - 6.5 mgs

Day 2 - 6 mgs

Day 3 - 6.5 mgs

Day 4 - 6mgs

And so on again

It is very slow progress, but progress without nearly so much fatigue.

Best wishes to you.

The best way I came of it after quite few times was 1st day , say you take 10mg

2nd day take 9mg

3 rd day take 10mg

4th day take 9mg ........ do this for a month

Second month

1st day take 9mg

2nd day take 8mg

3rd day take 9mg

4th day take 8mg do this for a month and so on .

This was the only way I could reduce and have been off them for about 4 years now , good luck . It does a long time but it’s the way I could get off them

Think of it in percentage terms rather than mg. it took me three attempts and then an online doc in the US suggested I reduced by percentage. Going from say, 5mg to 1mg is far too quick. If I recall he suggested 10% a week. Yes, it takes longer, but it works.

For me, it was third time lucky and I felt absolutely fine.

Thank you for your replies everyone, I really appreciate it. I started at 30mg and have been reducing by 5mg a week, for a total six week course. I'm going to call my GP tomorrow if I'm still feeling naff. Thanks again!

Mmrr profile image
Mmrr in reply to snotts

At my recent rheumatology appointment, my consultant told me to use whatever way of dropping my prednisilone I managed best with. I'd previously asked my GP for 2.5 mg tablets to enable me to use the method I outlined ..above... but was refused (my own GP was on holiday and I got the duty Dr) saying a 1 mg drop should be used.

Rheumatology sorted that out for me with the GP and I got the 2.5 mg tablets.

I've found previously the GPs don't get it, you might be better contacting rheumatology. Best wishes.

Sunset54 profile image
Sunset54 in reply to Mmrr

2.5 mg tablets are so helpful because you can alternate taking 2 of them and then 1 of them alternately x I finally took 2.5 every other day for quite a time then finally reduced x2 doses and then 1 dose and now I am free . Don’t rush it because it is such a fantastic drug but moving too quickly will leave you in pain . Best of luck to you.

My most important tip is do try to get to nil. I’ve tried now 4 times and failed, it is now having very bad effects on my general health. Currently on 5mg. Tried to cut to 2.5 this week and in so much additional main I will have to go back to 5. The main benefit is to the shoulders and hands, it seems to have no effects elsewhere but did up to a year ago.

snotts profile image
snotts in reply to ATSF

It's such a double edged sword. I'm a pred veteran for difficult asthma but usually short courses with no taper. The longest I was in it for asthma was four months after a very bad spell. It makes my lungs feel amazing but is terrible for everything else.

Mmrr profile image
Mmrr in reply to ATSF

Dropping from 5 to 2.5 mgs in one day is just to large a drop.

See my comments above about alternating days

, a possible way of reducing

5 one day then 4.5 the next day , back to 5 the next day , 4.5 the next.....

Lolabridge profile image
Lolabridge in reply to ATSF

I agree with Mmrr that’s way too big a drop. I was only allowed to reduce by 1mg per month.Slow and steady wins when it comes to Prednisolone, especially if you’ve been taking it for a long time.

KittyJ profile image
KittyJ in reply to ATSF

ATSF you need to get some 1mg tablets and reduce much slower than you are, it took me years and many tries to get off pred and eventually reducing by 0.5mg every three weeks and doing as Mmrr says alternating dose. I was stuck at 5mg for a long time until I did it this way (I was on pred for 25+ years) You will get there, it’s just finding the way for you.

Morning 👋My Consultant said alternate (I was doing 10 one day, 5 the next) for a month, then 5 for another month, then 5 & 0 for another month, then 0.

I actually think my last flare was brought on by tapering too quickly. I’ve now had an injection which gets absorbed naturally, so I hope I don’t start getting headaches again.

It’s tricky, as I suppose everyone is different.

I really struggled below 5mg, even going slowly. Then at one of my appointments I saw a new nurse. He suggested an injection of depo. We worked out that it would take as long for the injection to wear off as it would take for me to wean off the tabs. So I went for it, Stopped the tabs and waited for the injection to wear off (12 weels) . Might be worth you trying it ? Best wishes🙂

Take it very slowly and nothing else you can do, if it's your GP who has set the timeline it could be worth ringing and asking if you could go up to 15 every other day with 10 on the other day. I came down from 100mg and it took months the last bit of 15 to 0 took a long time so don't be frightened to ask for more help. Even a steroid injection which tapers off naturally might help. Really it does depend on how long you've been on them but longer time taking them usually equals a long time to come off.

It is slow but I find the wave way works for me too so I do 10mg day 1 then day 2 9mg and I do this for a week then following week start 9mg then 8mg etc etc . We all react differently so hard to gauge x

Something to keep in mind is the body stops making steroids when you take more than 7.5mg medically, do what the experts tell you but taking steroids long term is never ideal.

Hi Snotts,I was on a continual dose of 10mg a day for some months. I decided to taper off them so this is how I did it.

3 wks of 7 and a half mg

3 wks of 5mg

3wks of 2 and a half mg

Then none. It seems to be working.

Hope this helps, bear in mind this is how I am doing it and it was my decision.

Take care.

Thank you everyone. I'm in two minds about it really. A big part of me just wants to get it over with and get off them ASAP, as I have osteopenia and some muscle problems long term from all of my asthma roids, plus some monster stretchmarks. But also, this joint pain is just not live-with-able. I think I'll speak to my GP tomorrow.

Big love to everyone that replied - this community is wonderful.

Hi Snotts. I’m just starting to decrease from 10. I will see-saw my dose up and down each day as others have described. I am focusing on using diet, essential oils, and massage to help me get through a 5 week step down. (We’ll see how long it really takes.). I started getting fresh meals to prepare delivered to my home and pick options that include the cortisol reducing ingredients. Lavender and Ylang-Ylang oils really do help me relax. I can dismiss regular use of these oils - but I’m going to use them daily no matter how I feel to drive the cortisol down. Something new I’m going to try is massage in the evenings when cortisol levels are at their highest. I found quite a bit of information on line about back massage. Just reading it made my kidneys cry for help. Sometimes I’m up for “doing things” to make things better. Other times I just can’t even wonder or care. I take Provigil and lose dose naltrexone (LDN) to be awake and present. I don’t hear very many people say they use these drugs. I simply would not even be able to function without them. My GP has Lupus and uses them herself. Maybe I just got lucky to have found her. Good luck and God Bless.

You may also like...