Prednisolone and sleep deprivation

Thanks.  I was 70 last week and I appreciate that, as we age, we need less sleep and that we may have sleep-related problems. But this is radically different: I'm alive and alert for 20 hours a day!! Maybe I should just count my blessings, 'cos I am, in effect, experiencing twice as much of life as before!!  Previously (ie pre-steroids), if I had only 3 hours sleep one night, I would be like a zombie the next morning.  I just wonder whether anyone else has had a similar experience on steroids and whether there may eventually be some major comedown.

Hi ronnie... Yes, when I first started on 15mg about 6 weeks ago, I did experience much the same as you. However, it was fairly short lived, only about 1 1/2 weeks. Of course I'd also been tapering down (2 quickly) at that point! Now I'm back up 2. 14.5mg and more fatigued than ever! I'm only sleeping 2-3 hrs p/night still only NOW I Feel it!! As everyone always says, we're all different, but that's been my experience thus far.

Ps. I tend 2 be taking little 10-20m. "cat naps" throughout the day! That too is a 1st!

Pss...happy belated birthday!!😊. I will be 68 on 11/6. (Voter's day, please do so!!!)

Thanks - I think!! But I prefer to go with the recommendations of the top consultant rheumatologist in the UK under whose guidance I am intending to manage this condition. Clearly, as with just about everything in life, opinions are divided and I am grateful to you for providing the most pessimistic (in terms of duration) forecast. Maybe I'll get back to you after 18 months, 2 years and then 5.9 years to see whose prognosis was the more accurate.

Ronnie, I have researched quite a few pmr/GCA reports, including Mayo Clinic and John Hopkins ...

Unfortunately this disease has no quick cure, we can keep it in control by taking very  low doses of prednisone, but unfortunately there is no miracle cure for this auto immune disease...

For the passed twenty years I have suffered from another auto immune disease called 

'Lichen Sclerosis '. It is an extremely painful disease, but I do manage to keep it under control with creams . There are occasional days when I can have a bad flare up and I have to administer a cortisone cream. !!

It's funny, but since I'm taking Prednisone orally for PMR, my symptoms of lichen Sclerosis have subsided. ( but I know from other support group members this is only a temporary luxury)

I really wish you all the luck in the world with your PMR and hope for you, that your symptoms will disappear quickly. 

In the meanwhile , I trust Eileen and her advice....we are truly lucky to have her here. 

Not all of us are so lucky to be able to find a rheumatologist to whom we can trust. Unfortunately some of the advice they have given has been detrimental...

Example, the  reduction of prednisone quickly ...

You are a star...❤️

Thanks to information, research articles and personal stories I’ve read on this (and another helpful forum), I was prepared for the disappointment of realising that being off steroids in one-two years is highly unlikely for the majority of us, and sadly I wasn’t included in that statistic. The rheumatologists and GPs would dearly love us to be off steroids in that time, but it just doesn’t happen.

Two years on, I’m not off steroids, but have reached 8.5mg. In the meantime, I’m getting on with life and doing the best I can, supported by this (and another) forum. 

Hi claire...having been on prednisone for 2yrs now, and down 2 8.5mg. could you tell me what your side effects have been? I'm currently on 14.5 mg after 6 weeks and experiencing some weight gain (5lbs), snappiness, being very emotional, muscle spasms, etc! Prednisone Has helped with my awful joint pain But, Oy-vay!!

Over a year ago I got down to 9mg, had a flare due to a whole range of issues, went back to 15mg, and have been very slowly reducing ever since. My weight and appetite have been stable, but my face shape has changed. I thought the slightly chubbier cheeks made me look younger until a friend’s partner told me how much older I was looking!! Thanks a lot! Not. 

I’m far more emotional than I used to be, and cry more easily, which is a pain in the neck. I can also be more snappy, but that was worse at the higher doses. 

My BP has gone up very slightly (I’ve got a BP monitor at home), and when I asked a colleague to check my blood sugar at work, it was 5.6 mmols/l which I’ve interpreted as prediabetic. Hence I’m going to keep an eye on my diet a bit more. 

Finally, I had a DEXA scan and I’ve been diagnosed with osteopenia, so I’ve been researching what I need to do to improve my results. I asked my GP if it was possible to turn it around and she didn’t know...

Despite the side effects, thanks to Pred, I’m able to work four days a week, so I’ll do my best to deal with the side effects while I persevere with the DSNS reduction method. Meanwhile, I keep an eye on the invaluable advice and support given on this forum. 

Good luck with your reduction! It’s difficult, but as Eileen says, remember the hare and the tortoise. It’s not a race. 

Anhaga will tell you how to turn around bone density results without medication.

A random fasting BS is meaningless when you are on pred - pred changes how your body processes carbs and also causes the liver to release random spikes of glucose. Since you don't know when this happens - they could be influencing any BS test you have. It is the Hba1c that is significant, a reflection of your average BS levels over the previous 3 months.

Blimey - with friends like that...

Thanks so much 4 your quick response...LOLOL, sometimes when I type my posts, I selfishly think I'll get an immediate response. I'm trying 2 become more patient😉. First, if I may be so bold, " deep six" this friend of yours partner! No one needs such negatively in their lives! Then, thanks for sharing some of your side effects. It's so comforting to hear of things I can relate to! The one issue i forgot to address was one of my Biggest and most annoying....profuse sweating ALL the time, especially my scalp! My hair often looks like I've just had a shower!! Ughhh #Lovin' life!

Yes, the friend’s partner. I was stunned that he had the cheek to say that to my face. My friend was equally horrified! I’m sure words were said when they got home. 

I’ll also see what I can glean from Anhaga about my bone density. A useful contact! 

Lynda I'm with you regarding sweating. My hair and neck absolutely drip all the time. I have two face cloths inside my bra too...

The good side, I don't need to go to the bathroom so often.  Wink wink. 

Omggg!! I can't believe you mentioned the hair issue! I was going to mention that as well but was afraid I was starting to sound like a raging lunatic! Up until about 2 years ago I had "stick" straight hair my entire life. Then all of a sudden, it started growing in curly. That was very different but still ok. Recently tho' it has become very dry ( used to be oily) and FRIZZY! That's definitely NOT ok. Now I'm trying to figure out how to work with my new "goldilocks"! Always something. .....on the days when my hands and fingers are acting up, I have some very "interesting" hairdo's!

I'm. just now realizing how vast an area this forum reaches. I'm in USA, California to be precise. So yes, I'm trying to adjust my thinking about time differations! Blessings to you all no matter where!

You’re definitely not a raging lunatic. Thank goodness we all understand each other on this forum. 

Claire, let's stay in touch! I can SO relate to you and your wonderful sense of humor😁. Where do you live?

....quick question, while I experienced the same burst of energy as some of my fellow pmr/folks, I'm now finding that apprx 30m after taking my dose of prednisone, I'm literally fighting 2 stay awake! Most often, sleep wins out. Again, mostly 20+m. cat naps, but still. I'm missing the energetic feeling! Anyone else can relate??

The immediate response to taking pred can vary - some people feel quite wobbly/dizzy an hour or two after taking the dose, others feel very tired/sleepy. They sometimes switch the time of taking the pred to bedtime - so they suffer the inconvenience while asleep! But just 30 min after taking the tablets is very soon - esecially with prednisone as it must pass through the liver to become active and that takes a couple of hours.

But all side effects do tend to lessen with time as your body becomes more used to the medication. That's why we tell people to just be patient and stick with a dose for a few weeks at the start until it has had a chance to do what it is meant to do and your body had adjusted.

Just got home from ophthalmologist. He's referred me to a Neuro-ophthalmologist as he's fairly certain my double vision problem is pmr related and thinks this doc would be a more appropriate fit! Now I've got to deal w/awful eyesight problem till 9/13! Ughhh! I sure hope this doesn't wreck my vacation. Been planning it too long!

I'm a newcomer to this world.  What exactly is GCA?

Thx Eileen 4 your quick response! So this Neuro- ophthalmologist is a bunch of B.S.?? Oy, Vayy! So tired of so many different answers! As far as Rheumy goes, I don't know if you've been following my posts or not but my doc just left on a Very Surprising (2 me!) maternity leave and I've been referred 2 a new doc. when I return from my vacation. Things seem pretty messed up at the moment, and unfortunately are taking all the excitement out of my LONG OVERDUE VACATION!!

Giant Cell Arteritis - PMR's big brother which affects arteries in the head (and other parts of the body) and can lead to loss of vision if not identified and treated in a timely manner with high doses of pred.

You seem to have some very strange ideas about who manages PMR/GCA in the USA - but a neuro-opthalmologist is a strange choice for a vasculitis (inflamed blood vessels) even if the effect is of damage to the optic nerve due to poor blood flow. It isn't a disease of the nerve - but the arteries supplying it. But hey-ho ...

Yes, I see all the posts - I have read almost every post, certainly all the ones I have been notified of, since I joined this forum 9 years ago...

PS - in most of rheumatology, the doctor disappearing on holiday/sick leave/maty leave probably makes little difference to the patient. But since a proportion of PMR patients progress to GCA I think it is appalling that cover wasn't in place before she left since GCA is a medical emergency. It isn't as if you don't get at least some warning you are going to be off...

Hey ronnie...I too am new 2 this Crazy whole thing (6 weeks). I don't profess to have all the answers ( although thanks to this forum and NOT my doc, I'm considerably more informed than before!). Anyway, it's my understanding that GCA is closely related to pmr only more serious. I believe the side effects are a bit more dangerous and the dosage of necessary prednisone is usually greater. It stands for giant cell arteri....(something that starts with an "A" LOL. I maybe about to find out if I have GCA instead of pmr😖. I hope this is of some hope 2 you! Take care.