Prednisolone withdrawal

[Khadibuh]

I'm new here. I've had Lupus for 17 years but wasn't diagnosed as lupus till 2011. I've had all the topsy turvy of medications and all. Finally on HCQS 400mg and Prednisolone 10mg. While trying to reduce the dose to 7.5mg, it's been hell these few days! Permanent migraine, horrible moods, insomnia! If there's anything that helps the withdrawal symptom stage more comfortable, please help me with the information. Thank you..

[PMRpro]

Dropping just 1mg at a time would be a good start! How long have you been on pred?

[Khadibuh in reply to PMRpro]

Thank you so much for your response. I’ve been on it for 6 years now.

[PMRpro in reply to Khadibuh]

Then VERY slowly does it! Your adrenal glands need a very phased return to work!!!

[Joy_1]

I drop by 0.5mg Pred every 4 weeks.

If I do it any faster then I am in big trouble - huge amounts of fatigue + some pain.

[Khadibuh in reply to Joy_1]

Yeah, same here! I’ll try it gradually then. Thank you so much.

[hildebeast]

Hi I was told by my rheumy to alternate say 10 mg one day and next day 9.5mg then 10 mg next day then 9.5mg - do this for 6 weeks. Then six weeks on 9.5mg ... then 9.5mg one day, 9 mg next day then 9.5 mg next day for 6 weeks. I have now managed to get to 6.00 mg but god it takes so long but I do feel I am getting there. My pain has increased a little but I am determined. I never thought I could get below 7 mg. good luck sweetheart. xxxxxx

[Khadibuh in reply to hildebeast]

Thanks alot for your response, I’ll go gradually too. 👍🏽

[leslieliesel]

I just completed my prednisone taper about 2 weeks ago..I am also was on 10 mgs a day.Total including taper was about 2 months...my taper took the last 2-3 weeks of the total time on it. I went very slowly stayed on 7.5 for a eel then to 6,g for a couple of days then to 5 for a few days then 2.5 down to a crrushe liitle piece of the pill...I did have some uncomfortable days while tapering ..I am good now...of course my pains are creeping back...I'd rather have that then take prednison...I also take Hydroxy..hopefully the prednisone did what my dr wanted it to until my hydroxy kicked in.....but yes, I also had some headaches which I am not prone to get....hang in there!!

[Khadibuh in reply to leslieliesel]

Thank you so much! I can’t wait to gain some level of normalcy.

[PMRpro in reply to Khadibuh]

Sometimes that is what you need the pred for.

[hildebeast]

its is difficult and of course we are all so different. But steroid withdrawal symptoms are so like some Lupus symptoms so we do not know what we are dealing with (is it the Lupus or is it the reducing the steroids) and neither do the Doctors in my experience. sometimes I feel like a guinea pig ?? xxxxxxxxxxxxxxxxxxxxxxxxxxxx

[PMRpro in reply to hildebeast]

Same for almost everything pred is used for - the withdrawal syndrome commonly resembles the disorder you are using the pred to combat. Such a pain!!!! And why the slower you reduce the better as that aspect is minimised for most people.

[83meggie]

Please do not try to reduce the dose too quickly.1 mg per month.having had my dose upped to 10mg two months ago I am now on the reduction path.1 mg per month.good luck.

[Chanpreet_Walia LUPUS UK]

Hi Khadibuh,

Welcome to the LUPUS UK HealthUnlocked Community!

We offer a free information pack which you can download or request here: lupusuk.org.uk/request-info...

Have you spoken to your GP or rheumatologist about the symptoms you are experiencing?

Headaches are common in lupus, we published a factsheet on ‘LUPUS: and the Brain’ which you can read here: lupusuk.org.uk/wp-content/u...

Regular exercise helps to improve sleep quality. Exercise should be done at least a couple of hours before going to bed; otherwise the mind may be too active, making it more difficult to sleep. We published a blog article on exercising with lupus which you can read here: lupusuk.org.uk/lupus-and-ex...

The NHS Choices’ website provides information on sleep hygiene which I hope you will find useful: nhs.uk/LiveWell/sleep/Pages...

Please keep us updated, wishing you all the best.

[LizzieG101]

A bit late to the party but -although the gp says we don’t taper - the hospital have tapered me from 250 mcg pred to 60 mcg. In 2 weeks I think they will drop me to 50 mcg for 1 month. So the practice seems still to taper. They want to get me down to 0.0 mcg but envisage it will take 6 months. I also have lupus, steroid induced diabetes and renal failure. I’m on dialysis.

[PMRpro in reply to LizzieG101]

It depends on the time you have been on pred - you don't need to taper if you have only been on pred for a few weeks, even from very high doses, but past 3 weeks at any dose above 20mg you do need to taper to reduce and the longer past that, the gentler you need to be on yourself. Then down to 10mg can be relatively quick but after 10mg, slow is best.

By the way, do you really mean mcg? That is micrograms, a milligram is 1000 mcg and if you were at 250mcg you could stop just like that.

[LizzieG101 in reply to PMRpro]

I’ve been on steroids since january 2018. And yes, i made a mistakke about the mteasures of ml. It is tthe larger one i’m on

[PMRpro in reply to LizzieG101]

You need to taper but down to 10mg will be what you feel comfortable with - big steps at a time can make people feel the change in dose and while some people can take 20mg steps at really high doses, others can't and develop what is often called steroid withdrawal rheumatism. A basic rule is not more than 10% of the current dose at a time, Fram 10mg more than 1mg per month is difficult for most people - that's when you are waiting for your adrenal function to wake up and take over the production of the corticosteroid cortisol which the body needs to function - pred does the job while the dose is higher.