Hi all just wondering if anyone has taken their preds before going to bed ?? If so do they work ?
I went the eye hospital this morning and after 2 1/2 hours wait I actually walked out as had enough of waiting !! Not been for a year as they cancelled it 3 times !!!!! Then this happens, so will tell my doctor about it 😡
I have Margaret with great success. I wrote aboit in an earlier post However please read the post further down where several people say it’s a big no no. I am going to check with my rheumatologist as I’ve loved taking it at night. xx
Daisychain I can't remember last week lol lol but I am going to try half night and half early hours for a week and if I am better then it works ! Watch this space lol x
I originally split my 20mg dose - half at 10:30PM and half and 5:30AM, both taken with yogurt. This was a good recommendation from my rheumy after I reported some uncomfortable gastric symptoms. Solved that problem without additional medication, except for a few occasions when a meal was too big or too spicy.
Over the course of the last year, I managed my reduction by .5mg off the morning dose until it was zero. Then I started reducing the evening dose. I'm now at 6mg each night having just reduced by .5 mg again. I have not been shy about increasing by 1 mg or .5mg for a day or so, depending on what I expected to be the effects of bad weather, extra activity or stress. I did go up by 2mg during a week when I had the sniffles last winter, then resumed tapering by .5mg until I was back to the former reduced dose. How long I sat at any dose depended on how intense the withdrawal felt. I didn't at any point suffer very much beyond low-level aches and stiffness for a few days. I never had to backtrack to deal with that. I haven't experienced any flares.
I took this reduction course after a major flare induced by a too-steep reduction which left me all but crippled for the whole of the summer of 2017. After that passed, I took control of the reduction and it's been going fine. Very little to complain of in the way of symptoms or side effects. I have not experienced the "deadly fatigue" so many have reported. My bloodwork shows continuing decline in inflammation, approaching very close to normal at this point. Once I get to 5, I'll be following a more exact DSNS pattern including alternating doses - old and new - and see how it goes.
Everyone is different, and I don't know if this method will work for anyone else. Ask your doctor if this might be worth a try.
Hi Goodgrief, I shall certainly try 5mg at night and 5mg at 5 in morning. When in bed I am crippled with pain mostly in right leg have a job to turn over, it's strange as I have a hiatus hernia and preds don't seem to bother it, I just have the 5am ones with water. Perhaps because I am a weird person 😂
Are you saying your night pain is earlier than 4am-ish? Are they sure it is PMR?
Before I was taking preds around 9 in morning, and took quite a few hours to start working, then decided to take 5mg at 5 to 5 .30am and other 5mg after breakfast. Bedtime muscles not as sore , once I settle down I do go sleep pretty quick , I have a feeling it is my right hip but go for scans 22nd this month.
2 days ago I walked my dogs a long way up the downs behind me.
Yesterday what happened....... definitely flared my PMR up and was in agony, felt like someone was twisting their fist inside my muscles, I should not of gone that far . My fault as I do my best to not let it beat me so I push myself... not good idea !!
I will just have to wait for scans now to rule hips and pelvis out, Doctor wants to also rule out Bursitis, in the meantime I am just plodding along.
Hi Margaret I tried taking pred at night early on and it made me more functional in the mornings, however when I told my Rheumy he went ballistic and told me to double dose that day so that I was back on track to take them in the mornings. Rheumy is normally quite placid so quite an extreme reaction from him. He said taking pred at night would create problems further down the line when adrenals should start kicking in.
Mine haven't kicked in at all for nearly 6 years, not even gone into remission, but my GCA has been pretty good with hardly any flare ups. Just this darn PMR which hates me 😡 Doctor is going to let me have synacthen test next month so hope it gives good results !
What problems when adrenals kick in did he/she say Marilyn? have been taking all my pred always at night. But my pain ab initio was (unusually for PMR) much worse in the evening.
Hi Nanor. As I understand it pred does the work of adrenals when on 7+mgs. From 7mgs and below, the body apparently starts to take over adrenal function slowly. My Rheumy believes that taking pred at night may interfere with this process. It seems Rheumy's have different views on this though. If you take yours at night it makes sense that by evening pred reserves would be running low. Since I take mine in the morning I have a slower start to the day but am fine in the evenings.
Swings and roundabouts I guess!
Thank you for that ...Sorry for delay in replying!
I to have had great success with evening pred. Split 10/10 am/evening as morning dose not able to function until mid am. No good for my schedule. Now after 3 months on 13mg evening only. All good and tapering by half mg per 2 weeks. All with Ruemy and GP approval. Feeling good and only few days discomfort til adjustments made. Will continue now at dead slow as seems to make sense. I still have bad days...but less frequent and have to pace myself and not overdo. Keeping fingers crossed progress continues. Good luck!
Wow that's given me the boost I need to try out, my doctor is so nice and understanding he lets me do it myself adjusting preds. I will start tonight with 5mg then at 5am the other 5mg,for a few nights to see if it works for me ! I don't want to up my preds 😤 Thank you x
I do now take all at bedtime with milk and biscuit. Less of a buzz..and I still sleep soundly. Feel quite normal, not steroidy in the daytime....bit stiff in the evening but can cope with this.
Hello, I had to take my Pred such that it would be going into my bloodstream about 10pm because it made me so uncoordinated and groggy. This was from 60mg until about 5mg. The effect did diminish with dose but it just suited my life. Rheumy just looked at me like I was a bit special but didn’t argue. The Endocrinologist said okay while the adrenals are completely asleep with higher doses but once I was at 5mg wanting the adrenals to work again, I should take it in the mornings and so I do.
Others here are taking in the early hours so they can be ready with a bloodstream full for the peak cytokine output around 4am.
As for waiting times, my Haematologist is 2-5 hours routinely, Oncology used to be about 4 hours, Rheumy an hour and Endocrinologist was 30 mins.
I was in such gross pain with PMR waiting I had to walk out as everyone else after me had been seen !!! normally I will get seen after half hour so my patience just wore out, most probably get a letter now from eye clinic 😂
I am going to now split dose night and early morning, so fingers crossed ! Thank you
I usually check after an hour to see how things are going. A few times I’ve been ‘forgotten ‘.
Think they did forget me !! Never mind another time 😂 Gives them time to have a talk why they left me so long lol
Hi Margaret
I did for a while but it was for a specific reason, we went on a Cruise to the Far East & all our tours had a very early start 6.30/7am so l knew ld never be able to get up & get going!
So l tried it for a couple of weeks before we went & while on the Cruise but went back to taking them all in a morning a week after we returned home.
I am in fact trying it again but can’t see any difference at the moment.
Best Wishes
Mrs N 🍀
Took my first 11.30pm 10mg last night 😱 I must say my brain seems clearer, slept like a log. Watch this space....
I changed to 9pm as couldn't function in the mornings. Very rarely have sleep problems. Best thing I did. Have GCA/PMR since Nov 2016 and still on 22mg Pred.
Wow still that amount ? Have you tried the slow taper method ?
Oh yes! I can only reduce 0.5mg every few weeks if I am lucky. Think I am ok and then I start gettting the very tight band around my head feeling, sore on top of head and very sore painful shoulders.
Oh you poor thing, I keep going up and down, we are all in the same boat 😡 Just got back from my dog walk and GCA has just flared up !! Not a happy bunny, perhaps because I took mine before going bed for the first time. This is the first flare up for ages !! Think I need to take early morning again as I can't hack my GCA , gives me depression, so if I go off line I hope you all forgive me . Good luck Rlake x
And you thank you.
I've been taking my meds at night for about 6 months now and feel so much better in the morning.
I'm on 4mg at present.
Pmr is such a roller coaster and I truly believe that you have to try anything that makes life easier. The medical profession aren't always right.
Good luck
The time to take your pred is when it works best for YOU - and to say it is a no-no to take it at night shows a degree of ignorance on the part of the person saying it.
A study was done that showed 5mg pred at night affected adrenal function more than 15mg taken at 8.30am. That is what they are taught. HOWEVER - this is only of relevance for patients on SHORT courses of pred, up to maybe a few months maximum. When you take pred, even at a lowish dose, for a long time or at a higher dose for more than a few weeks then the adrenal glands start to go into hibernation.
If you are put on pred for a few weeks, of course it makes sense to take it in the morning and then the adrenal glands may not shrink at all. When you are on pred for years as we are likely to be it is a very different matter. Taking the dose at night or splitting it may let you get away with a slightly reduced dose - and that is always good.
The form of pred I take is designed to be taken at night before bed, it releases as 2am which is the time that has been established as the optimum time to avoid/reduce morning stiffness. Rheumatologists I know who use it think it is wonderful but it doesn't fit with the "only take pred in the morning" mantra. Let's face it - taking pred at 8.30am which is the time it affects the adrenals less will mean we can do next to nothing until after lunch for most people. Pretty useless IMHO!
I am taking 4mg right now, just having arrived here at the tail end of a 49 day slow taper. I've just finished my first full week at 4mg. This discussion makes me wonder if it would be better for my recovery at this dosage if I were to switch to morning IR Pred. from the Rayos DR Pred. I've always thought that DR Pred is a "morning" dose since it releases 3-4am, albeit earlier than the standard 8 am breakfast dosing. But maybe I've been fooling myself.
Any suggestions?
Hi, I just started last night taking my full 10mg and hope in a couple of days I will feel better. You are doing well cutting down, keep up the good work x
Why? The Rayos/Lodotra takes effect at about 4am having released at 2am if you are taking it properly. The only possible advantage would be for adrenal function but that should also return once you are below 5mg whatever time you take it. If it doesn't work for the full 24 hours you would find mornings quite uncomfortable. Personally I think there is far too much emphasis put on the "morning" dose at 8.30am. If the PMR is still there you have to wait far too long to be able to function. But it is up to you.
I've been taking my pred. dose at night at about 11.30 p.m. for well over a year now as I felt really weird in the mornings when I took it at breakfast time and it didn't work relieve the PMR pain until mid day. I started at 15mg almost 2 years ago and had a couple of flares until I started using DSNS taper. I'm on my way down to 4 mg without any side affects so far, so I assume my adrenals have woken up (I hope I'm not speaking too soon). By the way the severe pain in my right thigh and the right hand side of my lower back turned out to be a compressed femoral nerve which my Osteopath has released and it is much improved.
Wow Joan hope for me yet ! My didn't start till late afternoon that's why it was getting me down. Tonight I am going to take 5mg and if I wake up early again I will take other 5mg will try till weekend and if better I will go the full hog of 10mg every night. I can honestly say the only time preds made me feel strange was when I started on 60mg nearly 6 years ago , they don't affect me now for some reason, keep up the good work !!
5+5 mg isn't the same as 10mg all at once - splitting the dose is likely to extend the time for which the antiinflammatory effect lasts.
I never knew this thank you, I shall take 10mg then before I go bed and see how I do !
I take my preds at night and wake up without pain for the rest of the day until some discomfort starts in the evening.
No problem with my Rheumy. She says if this helps......go ahead.
We are all different!
Thank you, hope this helps me , I don't mind the evening discomfort at all as long as I can get through the day.
I switched to Rayos in order to take the prednisone at night. That is what was determined by my dr for me to do. I just can't tell you how different it has made my mornings. Instead of sitting around for 2 hours waiting for all the pain and stiffness to lighten so I could move, I am good to go in about a half hour after waking. I am even doing a few stretches while still in bed, which I haven't bee able to do for a good while.
I am on 12mg. rayos. I started taking 10 mg. about 11pm. Then first thing in the morning I took the remaining 2. After about a month of doing it that way, I changed it up to taking 5mg at 11pm and the 5mg in the morning and the remaining 2mg at around noon.
This seems to help me a lot thru out the day. Don't get me wrong, I still have some pain and lots of fatigue, but this way of taking the meds has helped a lot and while under the care of my doctor.
This way of taking Rayos works well because Rayos is coated so is easier on the stomach and it is timed release.
Hope this helps
Lin
The coating of Rayos is designed to break down while still in the stomach and release the pred in exactly the same way as ordinary pred. Just it is 4 hours later - which is why taking it with food at a specific time is important and that was an integral part of the patent application priginally. It doesn't actually have any particular protective effect on the stomach. The coated pred that does is designed to pass all the way through the stomach by being resistant to stomach acid and so it is absorbed much further down the gut, probably at a similar delay. Given the price of Rayos/Lodotra there isn't a lot of point using it at other times of day - it is designed to be taken at 10pm to mimic taking it at 2am which was established to be the optimum time to avoid morning stiffness - without waking in the middle of the night to take it,
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reducing preds
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