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Vasculitis UK
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Prednisolone

Hi all

Just started taking Prednisolone for GPA vasculitis. The instructions state take in the morning with food. I’m really not an early morning eater and was wondering if anyone takes it at night? Apparently not good to take on an empty stomach...

Mish

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Advised to take in the morning with food as can keep you awake at night otherwise. Are you on Omeprazole ?

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Just a yoghurt or a glass of milk is often enough. Or you could ask to be given enteric coated prednisolone since you are obviously in the UK. I took them on an empty stomach.

Quite a few people do take it at night for all sorts of reasons (come over to PMRGCAuk and you can "meet" them) but many doctors really have a fit about it! To some extent it depends how long you are to be on it and at what dose. We are all on it for years so we will experience adrenal suppression anyway but if you are on it just for a few months, taking it at night will lead to much more adrenal suppression than taking it in the morning. For some people, taking it later in the day interferes with their sleep more but everyone is different and some people have found they sleep better taking it immediately before bed.

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I’m on 150mg Ranitidine. I read it can cause insomnia but even when prescribed in the mornings so thought it may be better to take late evening after I’ve eaten. Struggle with eating before mid morning.

I’m also altering my dietary habits although healthy veggie!! Low salt increase potassium etc.

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Then take it at night and see what happens. You won't be on it for long and are tapering right from the start so it shouldn't pose too much of a problem.

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That’s useful to know I wasn’t aware of the increase in adrenal suppression. Im allergic to milk and drinking a glass of soya milk 😖. I’ve been prescribed 20mg decreasing by 5mg fortnightly for two months. Don’t want to be on it for long but at same time need my symptoms to alleviate. Also due to start Methotrexate end of month so hoping to be off pred next month.

Maybe I’ll eat a rice cake or something and keep with the mornings! It’s early days only commenced yesterday

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That’s a very low starting dose for GPA and it’s unusual not to be given other immunosuppressive medications at the same time and to be treated by a nurse.

GPA is a rare, complex disease, it requires treatment by a Consultant with knowledge and experience of treating it. What organ involvement do you have as the evidence based guidelines usually recommend either Cyclophosamide or Rituximab to induce remission and prevent end organ damage.

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Currently affecting ears nose and sinuses as well as problems with my eyes and chest. Only diagnosed a few weeks ago after 2 years of feeling rough with various infections/ antibiotics/surgeries. Thankfully my ENT consultant carried out blood tests, ANCA came back positive, within 2 weeks saw Rheumatologist. As stated earlier will be starting Methotrexate soon...no doubt I’ll be asking for support and advice around that drug although will be under a nurse!

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I would phone the Vasculitis UK helpline and ask for advice.

The last thing I want to do is concern you but with rare disease we need to be our own best advocates. Have you had the extent of the Vasculitis investigated especially your chest and eyes?

The best question to ask is how many patients your Consultant has with GPA and if your treatment is in line with the BSR or EULAR guidelines.

GPA is an aggressive disease which requires aggressive, timely treatment by experts.

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Thanks I’ll keep that in mind if no better once on Methotrexate I’ll get my appt with him brought forward in first instance. Still working full time which I may have to review!

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Methotrexate will take up to 8 weeks ( at the correct dose ) to work. You have been given a low dose of prednisolone and a tapering plan so may be on an ineffective dose of pred whilst waiting for the Methotrexate to kick in.

Have you been given any information at all about GPA, written or verbal? Has anyone ever dipsticked your urine to make sure that your kidneys aren’t affected?

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Yes been given a leaflet... kidneys fine. I’m very sensitive to meds and already feeling some side effects. Still getting my head around it and hoping what he has prescribed helps. Only started 2 days ago so hopefully will begin to feel some benefits soon. I’m at the hospital in 3 weeks so can discuss then with the nurse if no better. Thanks for your advice much appreciated.

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It can take up to 12 weeks for Methotrexate to be fully effective. See

versusarthritis.org/about-a...

under "How long does it take to work".

Like Tynemouth I am concerned by your treatment protocol. That is a very low starting steroid dose for GPA, and tapering before the Methotrexate can fully kick in seems unwise. I would also recommend that you speak to the Vasculitis UK charity helpline. For their contact details (phone and email) see

vasculitis.org.uk/helpline

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As PMRpro says dose is relevant. If you are just starting treatment for GPA then I guess you are on a high tapering dose of Pred. I started on 75 mg per day and was told to split the dose, so I was taking 40 mg in the morning and 35 mg in the evening. This did result in awful insomnia. My daughter pharmacist told me I should be taking the second dose at lunchtime to stop me getting a 'high' in the middle of the night. This certainly helped with the sleeping. Chris

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Ok thanks Chris I’m on a much lower dose. Sounds as though I can alter the time I take it in the mornings slightly then. Can give myself an hour or so after up and eat between working!

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Oh yes - we take it early to reduce morning stiffness but if that isn't an issue then 8.30-9 or even later is fine.

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Ooh err...…….8.30 - 9 I would consider really early, hey ho, the joys of retirement!!

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Haha Nadine!!! Another 20 years for me I’m afraid before then 😩

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Early for pred in my book is 6am! Many of our people do that, or even earlier, and settle down for another couple of hours to allow the pred to work on the morning stiffness. And since PMR/GCA are diseases of the older generation (over 50 at least) most of us are retired too!

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I feel about 80 at the moment!!

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So did I when I was 51 and it all kicked off!!!

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Looking at the Vasculitis UK website it does say that Methotrexate is used instead of cyclophosphamide (in specific circumstances). However everyone I have spoken to with ANCA associated vasculitis (GPA, MPA etc) have started with cyclophosphamide and 60-75 mg of prednisolone (tapering to around 5mg over 6 months). The important thing is that the consultant treating you is well experienced in treating vasculitis. The helpline will be ale to advise you of specialist centres around the UK for treating Vasculitis.

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I was started on 60 mg and am now in the process of reducing to 30 mg. My specialist said morning was better to reduce sleeping problems at night. But I've still ended up taking sleeping pills - don't know how much the Prednisolone was to blame but I was not able to get to sleep. I don't mind waking up for awhile in the wee small hours, but I find it awful not being able to get to sleep in the first place.

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I take it at night, because I usually only have one meal a day. I sleep masses because of my cerebral vasculitis, and taking it with food earlier simply isn't convenient.

I've been on it since 1998, including hefty doses at the start and for a years after a major relapse in 2004. It hasn't been too problematic for insomnia for me. I've had more problems from the severe incontinence my brain vasculitis causes keeping me awake.

Good luck!

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I have GPA Vasculitis. If I was you, I would take preds with my first meal of the day. Mine was brunch as I couldn't wake up in the morning.

They suggest morning because our body produces cortisol in the morning and they prefer that you follow your body's pattern.

You are in quite low dose, though. Are you on any other medication for Vasculitis?

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After reading yours and others I’ll keep taking it in the mornings to safe. Thankfully it is a low dose unsure yet as to whether I will be on again once this course finishes. But will be starting Methotrexate soon long term have appt with the nurse on the 25th.

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Hi I have been taking prednisolone for 4 years of various dosage from 80mg to 15mg, and always have them about 11am or with lunch at 12ish. Never had any issues. However I do know that never take in evening because it can affect your sleep pattern.

Hope this helps

G

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Thankyou you have all be very helpful.

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I have GPA and have been taking steroids on a morning without food depends how strong you stomach is.....

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And I will just add - whether it affects your sleep is a personal thik. I actually know a couple of people who find they sleep better taking their pred at night! You have to experiment a bit if you areo on it for any length of time and grit your teeth if it is a just a short time.

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I was advised not to take it after 2pm, but this was when I was being treated for cancer, so I was not on a high dose. Perhaps if you took it at lunch time you might be OK.

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Hi friend. I'm in the UK.

I've taken Pred every single day for over 10 years.

It was trial and error at first with my GPA and Pred.

I'm not an early riser either. But that's part of the GPA I guess.

The important/essential thing is that the Pred is EC. Enterically coated. Doctors try often to palm you off with the regular ones- uncoated which don't donyoir stomach any favours. EC, or non EC is like night and day. You should be fine with the EC. No reflux. Try to take them as early as possible in the day. Set your alarm for 6am, lean over, a tumbler of water, take the tablets and go back to sleep. Two pillows may help. They kick in then after 4 to 6 hours...when you are ready for your day. Good luck. Don't hesitate to get back to me if you have any other issues. I'll try to help. Good Luck !

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Thank you sir!

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Or ma’am!

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I hope you found it helpful. We ALL root for each other on this wonderful site.

Oh yes. I stopped sugar completely 2 months ago and for 6 weeks I haven't had a flare up. And lost 10 KILOS. Which also means less steroids. I WISH I had done it before. But better late than never!

All best. And I'm a guy btw. But the 'thank you' was very kind of you. All best

Jay.

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Yes been palmed off with the uncoated. Maybe my GP can change it if I have problems. Don’t have a tough tummy, IBS😞

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Poor you. And all for the sake of a few pennies...5mg are round and red. 2.5mg are brown. Good luck!

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#NHS!

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Did I read somewhere that the absorption of EC is not as good ... or have I dreamt it !

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Maybe you did however I did find this...

sps.nhs.uk/articles/is-ther...

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Thank you for your reply

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A study claimed it wasn't - but it was done in patients with gastrointestinal disorders!

It is absorbed very differently: the gastro-resistant coating means it is not broken down until after it leaves the acid environment of the stomach and then the release and absorption is slower and over a longer time. If you draw a graph of the blood level, it makes a smoother gentler upwards curve, plateaus and then falls away gently whereas plain pred is absorbed within an hour or so of swallowing it, forms a spike and then falls away in a more gentle fashion. The peak level is also not so high with e/c but it is maintained for longer. Some people find that it has a more sustained effect - but like everything else about pred, everyone is different! To some extent it depends what you are using it for - in PMR for example we are looking for management of morning stiffness and if you don't take e/c until breakfast time you end up waiting half the day for relief. OTOH, if you take it before bed, the delayed absorption may mean you have a really good effect and it didn't affect your sleep.

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Blimey I think I may follow you!

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You did misread. I was saying it's less punishing on the stomach walls. Not that it's less effective. Have another read!

😉

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