Reducing prednisolone

[Andfiona]

Have been on prednisolone plus immunosuppressants for over 6 years for sle, lupus profundus and nephritis more recently. Now have been on mycophenalate for just over a year and have even had normal bloods for the first time in 6 years. Mycophenalate seems to really suit me. I’m on that plus a few other bits to keep kidney etc stable. So have finally been able to reduce pred and this week have gone from 1mg daily to 1mg every other day. I’ve been on between 60 and 5mg over various points but have been reducing from 5 to 1mg over about 3 to 4 months. I’ve been so excited about stopping and I’ve felt really empowered having a few days without steroids! But since going from 1mg every day to 1mg every other day I’ve been aching and in pain. It’s not stopping me do too much but actually it’s really getting me down and I’ve been feeling really miserable, worn down and my hands are Sore 😟 It seems such a small amount now that I should just be able to stop like that. I’m feeling like a failure like I’m falling at the last hurdle. This probably sounds very dramatic as I’m sure I’ll feel better in a few days. I just wasn’t expecting pain and misery and emotional stuff. That’s it thanks for listening.

[PMRpro]

Have you had a synacthen test to be sure your adrenal glands are now able to produce the natural corticosteroid, cortisol? Even if they can, after stopping pred altogether it can take up to a year for that to settle down to a reliable pattern. In the meantime, if your cortisol production is wobbly - you may need a rescue pack just in case you have an adrenal crisis which can be life-threatening is untreated.

[Andfiona in reply to PMRpro]

Thanks v much. No test rheum hasn’t been concerned about that. Have been really well really until this week. I will speak to them on Monday. I suppose I feel a bit like I’m jumping the gun as it seems like I’ve been ok down 1mg so to be not ok on 1mg every other day just feels a bit pathetic!

[PMRpro in reply to Andfiona]

It's a 50% difference! It has been obvious on the PMRGCA forum (we all take pred longterm) that 1/2mg is often the difference between being OK - and NOT!

[happytulip in reply to PMRpro]

My thoughts exactly m synacten test needed to assess adrenal sufficiency.

[Whippet_lady]

Well done on getting your prednisolone so low! I want to reduce mine (been on 10mg/day since November. Up and down for 9 months before that) but my bloods won't let me. I'm putting on so much weight it can only be doing more harm than good and I'm barely eating anything - I'm sick of steamed fish and salad! I wouldn't be downhearted, you've done really well. Get the tests the others have suggested and if it means you have to take it even more slowly then that's the way it has to be to get to where you want to be. Good luck.

[Lily77]

Andfiona, let me introduce myself I am an international health coach specialising in lupus and psychotherapist and my book about lupus is 5 star rated on Amazon and I look after and help people with lupus all over the world. This is my advice: I have no doubt that you are feeling incredibly sore. You have come down much too quickly. 50% in one hit will inevitably cause you problems. You will feel terrible. I have been there and coached people through this transition and understand what you are going through! You need to go back up to your normal dose for two to three weeks to stabilise now and then you need to come down VERY gradually and this is the key RANDOMLY with no PATTERN otherwise your body will cotton on and react. Basically, you need to outwit your body. So you need to reduce for example by just 1mg on one day in the first two weeks, then 1mg on 2 different days at either end of the third week, then go back up to a full week for a week, then by 1mg on the fourth week, then by 1mg on two different days in the fifth week, then backup to a full week then, by 1mg on 3 days separated, then back up for 2 full weeks etc. If you need more help then message me and I will find a way to video talk you through it if you would like. Otherwise, I hope this gives you the right idea and how long it should take you. Best of luck...don't hesitate to message me if you need more info...I have been where you are.......with my very best regards, Lily

[carorueil in reply to Lily77]

This is a bit what I did - I used an excel table to 'plan' my weaning off... A long slow process but I felt safer doing this than the 'just stop it now' as prescribed by doctors.

[Treetop33 in reply to Lily77]

Hang on, I don't get that. Why do you need to trick your body into not noticing the reduction?

[Chicky12]

Hi, 1mg is quite a low dose so I would stick to that for now if it’s relieving your symptoms. I don’t take prednisolone any more, in fact not since 1996, however I have a steroid inhaler which I use every morning for my Asthma. I would rather keep using it for now, particularly in these weird times. Anything that avoids going to the doctors.

[carorueil]

I was prescribed 5mg prednisolone for 'adrenal issues' (which I didn't have....no synacthen test done just given them...) took it for 5 years (have Hashimotos thyroid disease). I can't say we have the same body/illnesses, but when my endo told me to come off Prednisolone I took about 18 months to do it. Knowing that I always react violently to sudden changes in meds, I went down slowly often being on 4mg for months before going down to 3mg etc.. As I was coming off lutenyl for endometriosis at the same time, I didn't want to be getting weaning symptoms mixed up. So for example I was on 4mg pred from Jan 2016 to June 2016 (when I finally managed to come off endo meds) and then replaced 1 day a week of 4mg with 3mg and gradually went down to 3mg... It took a long time but unlike my endo and other doctors, I know my body and didn't want to suddenly stop things which I'd been taking for years. I was finally off prednisolone in September 2017. Endo did synacthen test a few months later and adrenal glands were fine. My rhumatologist told me that on coming off I'd have more aches/pains (not directly related to why I was prescribed this in the first place!). But having being diagnosed with osteoporosis, and not needing prednisolone it was the right choice for me. Everyone's body is very different - and perhaps in your case it was a bit too sudden the drop in meds hence the symptoms. I'd put on 20kgs with the 5 years on 5mg Pred and one year after stopping it I just lost it all.. Perhaps have a chat with your doctor to see whether you should review what you're currently taking.. Good luck!

[RavenWolfnHoofUSA]

Thanks for the information. I can't text today but I'd like to discuss the prednisone issue with you as I've just started prednisone 20mg daily after suffering a continuous 3+ year flare. I would very much like to hear your experience. Again, thank you for sharing. I'll be in touch as soon as I stop twitching enough to type coherently! 🪶-sharon

[misty14]

Hi andfiona, thats an incredible achievement to get your pred down to 1mg everyother day. Its maddening i guess your so close to stopping to then get symptoms suddenly return. Im finding i get emotional too at each reduction and ive managed to get to 4.5mg now from 25mg spread over 3 years now!. Ive done 0.5mg each time monthly and am finding im not as well on 4.5mg than i was on 5mg. You wouldnt think 0.5mg would make a difference but it does.

You've had good advice and id add to talk to your rheumy about how you are. Im so pleased myco has helped you do this . No way are you a failure, its a huge achievement to have reduced pred like you have. I hope you feel better soon and its just a blip!. Keep safe Xx