I have had a pmr diagnosis for about 10 weeks now. When I get up in the morning, generally, I feel fine, but as I start to do jobs, I feel overwhelmed by fatigue and fuzzy headedness, enough to make me feel slightly off balance. About 4 - 5 hours after my pred, my head clears, and I feel a lot more positive. I am also experiencing frequent cramps in my feet, mainly at night, so I am having to continually lift my toes up to prevent them from going into full spasm, but it also can happen in the daytime. Another thing is a deterioration in my vision on the lower dose of pred. I got down to 9mg 10 days ago, but 3 days ago, my vision was definitely blurry, and I was finding it difficult to knit and read. The pain in my shoulders also increased, and I needed to take codeine to get any relief. I went back up to 15 mg yesterday with good results. My plan is to stay on 15 for at least a week and then maybe go down to 10mg.
Any insights would be appreciated
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jennycat
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If you are fine at 10 - don't hurry to go lower for now. In our experience, trying to go below 10mg after only 10 weeks really is pushing it. However - are you also moderating your activity as well as taking the pred? It doesn't cure anything - it is managing the inflammation and the actual disease process is ongoing in the background making you feel as if you have flu.
It does sound as if you are overdoing it in the mornings - and some people do react like that to pred. Some people even took pred before bed so they slept through the woozy effects pred had on them.
The cramps - try taking magnesium supplements or getting magnesium oils of sprays for topical use. Or use Epsom salts in the bath or as a foot bath. Pred makes you lose magnesium through the kidneys and you can become depleted.
Both pred and autoimmune disorders can cause dry eyes - usually noticeable because your eyes feel gritty and often produce lots of runny tears. Eye drops really help there but you must use them regularly 2 or 3 times a day. And too much screen time makes that worse. If you wear glasses you may find your focal length varies a lot and moving your specs and down your nose often helps and is cheaper than getting new specs as it can vary back and forward for some time.
I had to give up knitting - though I did have PMR for 5 years before getting pred!! Maybe had I had pred sooner I could have carried on!
thank you, this all helps. I am still finding it hard to moderate my activity. A big part of me is being fit before, and having my fitness level drop is really hard to cope with mentally. I might try my pred before bed tonight. I guess even though it will only be about 14 hours from my last dose I still take the full 15mg?
We were all in the same boat - you would be amazed how many here were very fit and active pre-PMR. You have a new normal - and don't try to fight PMR because it will always win.
That's what I was worried about - though my wonderful optician way back then did say if it didn't work out, he wouldn't leave me holding expensive specs I couldn't use. Didn't take him up on it though.
Sounds just like my husband was diagnosed in April by GP and has been yo-yoing on pred ever since under his gp with little knowledge of the management of PMR, after an initial 8 weeks of work he is now back but struggles on a daily basis.
When you first posted about your husbands PMR I did send you my intro post which include info on tapering as well as much more. We did say that working would be difficult, but sounds as if his GP has rigidly followed the guidelines - but forgot to read the caveat which says -
OHowever, there is no consistent evidence for an ideal steroid regimen suitable for all patients.
Therefore, the approach to treatment must be flexible and tailored to the individual as there is heterogeneity in disease course.
Some benefit from a more gradual steroid taper.
Dose adjustment may be required for disease severity, comorbidity, side effects and patient wishes
What dose is your husband at now, and how has he tapered?
Bit more info on tapering which may prove useful -
Pred did that to me and it was related to dose level. I am one of those that PMRPro says had to take it at bedtime to get through feeling groggy and uncoordinated when Pred hit its peak in the bloodstream. It gets better with dose reduction but it’s a pain if that the way it affects you.
My eye muscles were affected by Pred such that changing depth of focus was slow and my glasses prescription kept changing. I put up with it to avoid spending a fortune on glasses often. My GCA symptoms wasn’t general blurring and focus, more visual field drop outs, whole field grey outs and sparks of light.
Interesting. I always sag after lunch and I had put that down to the post prandial dip, but I do get a second wind if I take a nap. Groggy is a good word for it.
Not sure it will help you, but I, amongst many others, had to learn the hard way about slowing down my activities. I guess it must happen to just about everyone who gets diagnosed with PMR.
It is definitely very frustrating, but, as PMRpro says, you can’t fight it because PMR always wins. It’s a matter of being patient , then more patient, then more patient again! AND you need to give yourself loads of tlc.
Pmr will go when it’s ready, and it doesn’t like being hurried up.
As has been suggested once you get back to 10mg - then stay there for a month or so.. really is no rush after such a short time - and maybe introduce 1mg drop every couple of months.
And rethink your activity levels… we know it’s not easy, but a necessity.
Lots said already, and as prpo says you are never alone here. One other possibility could be to take your Pred at 02:00 which means it's in your system before the nasties come out to play around 0400-04:30 every day which has worked for many of us here. Maybe worth trying if taking it before bed keeps you awake all night. That's assuming you aren't on EC (Enteric Coated) Pred.
Hope no one minds if I jump in here? I have been on pred for PMR for nearly four years now and have managed to get down to 6.5mg. Over the last few months I’ve had issues with pain and fatigue but these are hopefully beginning to settle.
Current issue is total exhaustion every morning. I drag myself out of bed soon after 9 and take my pred after breakfast (10 ish). I’m then completely exhausted, can’t really focus on much and am generally a pain to be around 😟
Come 6pm and I’m a different person, more lively and interested in life. I have to force myself to get to bed around 1am.
Does anyone have any thoughts on this please? I doubt it’s timing of pred because wouldn’t it then have been worse on higher doses?? Is it more likely adrenals struggling??
I’ve always been a night owl but never as bad as this!
No thoughts at all - but if you find out, do tell me!!! Not that I'd go as far to say I was LIVELY in the evening but having been almost asleep in front of the computer at 5-ish, when I get to bed soon after 10, I lie there wide awake until 3am some nights. Last night it was 5am ...
My husband and family say I should get to bed earlier but all my life I’ve been a night owl and often lie awake as you describe - so there seems little point in going to bed ‘early’ for the sake of it.. 🤷♀️
Hi NOP I'm sure you've tried/thought of this in the past but do you think taking your Pred earlier would help. I used to take mine around 02:00 ish and didn't have any morning problems. Strangely now I'm off it altogether I tend to be more fatigued/tired in the mornings now and that's not adrenals as my last Cortisol count came in at 750 something..
Might be worth trying though, just in case it works. We've only just moved so I'm thinking/hoping it's just the hassle/strain/work involved with the move and setting up the new house. At least the PMR has shown no signs of appearing again. Most boxes now gone!!
I have been a morning lark all my life. When I got to the sub-8mg level I could not get going in the mornings; it was a real struggle. Can’t say I was therefore blessed with an evening rally but perhaps that’s because I never was an owl. I had to put up with severe morning sluggishness until my adrenals were consistent arrivals at the breakfast party.
At first I thought ‘no’ on both counts, but then I realised that the OA pain in my right shoulder, wrist and left hand has been much worse since reducing pred, and I’ve been using ibuprofen gel at night, as well as 15mg codeine (although I’ve been taking the latter for nearly ten years). This could be contributing to my difficulty in getting going I guess? Although I doubt it’s the whole explanation..
Thanks, good idea, maybe I’ll try reduce the gel x
And as I’ve always been a definite night owl I guess the pred adds to this natural tendency.
Plus before I retired I had more regular reasons to fight my natural body clock. Always been a problem though… even though I could work until 3am, no problems, and often did!
And once the routine slips for whatever reason. it is awful trying to get it back. I'd probably do better if I went to bed at 9pm - but that is when my daughter calls from the UK where it is 8pm. Even with the forum, early mornings drag - and it is far too cold to go for a walk!!!!
She COULD but she has ADD (so does her partner), that she calls at all is a gift!!! The other one only chats on Messenger, no phone calls, very rarely a video call.
It isn't a daily thing by any means and is usually while they are preparing their evening meal, but when she does call I don't want to miss it. No idea what they were thinking one night a weekend or two ago. They had just called her partner's parents in N.Ireland and sort of automatic dial pressed my number - I was already in bed so they were very apologetic and insisted on hanging up. No idea why - she is often in bed when she calls me and I was decent enough! Then it was a week before she got round to it again - needed something of course!!!
I have one daughter who calls or texts most days about one thing or another (often because she wants or needs something) and often videocalls.
The other one calls once week and is usually on for 1 or 2 hours. She never videocalls and is often in bed when she rings.. Both seem to think I have endless time (which is not far from the truth at the moment). Their calls are very precious x
Daughters are mysteriously amazing and we have no script to guide us - just the enjoyment of those precious moments of contact and the hope we’re getting it right! ❤️
This is exactly me! I take my pred at 10.00 after forcing myself out of bed at 9.00, but very sluggish until midday. I am absolutely in full-swing and very active all evening and can tackle all sorts of tasks. I make myself go to bed at 01.00 but could easily stay up and do things. But, this is me!! I’ve always been a night owl and loved working night shifts as a nurse many years ago. All my best academic work was achieved from 02.00, and creative ideas just flooding in!
I did try changing my day/night habits but to no avail, it just didn’t work as this natural pattern is me. I do think losing the structure of work has made my pattern worse. I’ve learnt to accept this though and that helps.
So great to hear from a fellow spirit! The way you describe your day is me exactly. Come midnight, my ‘day’ starts and I’m mentally much more alert as well as physically (a bit) more energetic.
In working life I was a social worker. We had no night team but my colleagues used to joke that we should have one, and I could run it on my own. Everyone knew I struggled during the day. And like you I did my reports and academic work at night too…
It must drive my husband of 50 years crazy, now that we’re both at home. Like you I’ve tried to change, but the struggle never ends…
I DEFINITELY do, it's like magic ! I wish I understood why as I feel it might be important in terms of understanding the cause... pmr/pred/stuttering adrenals
You're taking your pred far too late. Natural cortisol levels peak at around 8am so you want to be in line with that. I'd take it at 8am maybe (although the ideal time is 6-7am) if you get up at 9. Pred takes an hour or so to start working so this will give it time to kick in and you won't be so groggy headed when you get up.
Thank you for your support DL 😊 I’m sure the poster now Hidden meant to be helpful- it’s so easy to get the tone a bit ‘off key’ on a forum though isn’t it.. ..🤷♀️
Me too me too ! 6.00pm magic happens, the clouds lift I suddenly start thinking again, as opposed to lying like a stunned slug. I still feel normally sleepy at usual bedtime, 10.30 to 11.00 and nod off for a couple of hours but I often have bad insomnia in the wee small hours. Then take pred at 6.00am and at 9.00am the clouds close in.... or not, I have no inbetween, only bad days or great days. I WISH I KNEW WHY.
Im afraid i was very much a lark, quite the opposite, so for me that's not a factor... I'm interested that several people reported eye symptoms, tho all described them differently. One day someone will join the dots !
Have you tried taking the pred at bedtime? It is unusual for it to make people sleepy but it is seen and if that happens - why not take advantage of it?
Just try bringing tomorrow's dose forward - what time do you go to bed? It might be confusing the first night so don't give up after one night. Or if you feel that is a bit drastic take half a dose before bed, the rest next morning and take the full dose the next night.
Thankyou, my nights are pretty dire anyway (restless legs can wake me when presumably-pred doesn't) but I do enjoy reading so it's always a chance to get on with some good books.I was always v much a Lark so usually feel v ready to go to bed around 10.30, but often only sleep for an hour or two, before being awake for following two or three.
i will try the half tonight, half tomorrow option, thankyou for the advice.
Just to say, after you posted this and with awful lethargy hitting around 9.am and lasting through till 6pm where it lifted like clockwork, I moved my dose (currently 9.5mg) time from 6.00am to around 9.00pm and have seen an amazing improvement. I still sleep badly, but not quite as often, and difference in my daytime function is unbelievable... I've waited about 4 weeks to comment on this as wanted to be sure... hope I don't jinx it !
Thank you so much for this and I’m so glad you’re feeling better 😊 Very kind of you to wait so long before passing on the good news too!
I’m still feeling really bemused and befuddled with fatigue 😳I’m worried as I expect you were about the possibility of an evening dose keeping me awake (I’m now on 5.5mg and hoping to drop to 5mg in a couple of weeks). Can I ask how long approximately is it between you taking pred and going to sleep? I’m honestly worried about setting off another bout of insomnia xx
Oh gosh, it's not an exact science I'm afraid, and each of us reacts differently, but I now take my pred in the evening between 8.30 and 9.00, and get to sleep mostly aroubd 11.00, (sometimes) 12.00. I then sleep for about 6 hours max, I am occasionally awake for an hour or two in the middle of the night, for the last 4 weeks since changing my dose time this is less frequent than before, i know it shouldn't be, I've no idea HOW it is but so far it is... might not last tho.
I guess if a dose time change triggered your insomnia, you could go back ? Good luck !
I see you've already had lots of helpful comments, but I think one point might have been missed. After taking an uncoated tablet, it takes two to three hours for the prednisolone to reach peak concentration in your bloodstream - and longer for enteric coated tablets.
The 'pain in your shoulders' might suggest you were barely taking enough prednisolone to last the day and your morning fatigue might be while the next dose is absorbed.
Yes - it could be a good idea to take a little more prednisolone , although your aim is to find the lowest dose that controls your current inflammation, and taper down as the PMR (hopefully) fades. But it is also a good idea not to push yourself too hard 'to do jobs'.
Inevitably when I wake up I feel as though I am recovering from a night out on the tiles crossed with the onset of flu. Yuck. It eases as the pred kicks in. Good luck!
hi jennycat. Re your vision, perhaps have an eye check just to make sure things are ok?
I didn’t have any vision problems early on taking Pred, but on a routine eye test it was found I had ocular hypertension (steroid induced). Eye drops now keep it at a normal level.
My vision has significantly changed over the five years on Pred, but maybe some of that is ageing too!
Hi - I started on 15mg but stayed on it for quite a lot longer than some others, I think at least 6 weeks, I told the Dr that after the first improvement which was quite drastic that I didn't feel well enough to drop. I also stopped exercising completely for about 2 months to allow my muscles to recover. Like you I was overwhelmed with fatigue but also getting to grips with everything as I've never been ill in my life apart from colds etc.
I experienced the cramps and found a magnesium spray on my feet before bed helped. I also had issues with focus but that seemed to settle after I got a new prescription which was due anyway.
Coming to terms with the fact that I couldn't just keep dropping 1mg every 4 weeks was hard but life happens and you do need to adjust your lifestyle. That was hardest for me. Also I found that people around me forget so I do need to remind them I get tired and can't do as much as I could - because I look well they forget. That's tough too. It seems like we need to pace ourselves and listen to our bodies, and that trying to rush it just sets us back. It's hard though!
Think about doing something to help manage the stress, I've had to find something other than exercise as not able to exercise like I used to. I find doing less but more frequently helps me rather than a bigger burst less often - I also use the Headspace app to meditate.
Hello, and commiserations.i will add my experience here in cade it sheds light, or anyone answering you can help.me too. I take my 10mg pred at 6.00 am, and have good days when I'm completely clear, and bad days where the symptoms hit always between 9 .00 and 9.20. If I get to 9.30 symptom-free I know i will feel great all day.
I describe my symptoms to myself as being 'behind my eyes', my vision is not actually blurred but it feels as if it is, v hard to explain to anyone not experiencing it, it comes down like a roller blind, from 1 minute clear to next minute bad.On a bad day, I have serious fatigue, and real mental lethargy, so much so that i am pretty useless, but it always stops around 6.30 at night (12 hours after pred. ) and I feel 'normal' in terms of mental and physical energy.
I have no idea if it is the pmr it self or pred related, or to do with something secreted, or not, by my stuttering adrenal glands.
It happens noticeably less when I am not reducing, but it can still happen on a steady dose.
Hoping this input can help you, or someone can tell me more, Information is power!
How very strange!! Never heard anyone with that sort of intermittent effect before.
In theory at least, your dose of 10mg is more than enough to suppress production of cortisol by the adrenal glands. So it would seem unlikely to be that. Does it relate to what you were doing the day before in any way?
No relation at all to activity, food or dose and I use a symptom diary to keep track. I have, however, after 2years plus of trying and failing to reduce (yes, ultra mega slowly) below 10mg come to believe that my adrenals are involved and are stuttering at best. My rheumatologist has had me on 25mg Methotrexate weekly for about 6 months, and the symptoms are a little reduced in frequency, but still on bad days the clods come down shortly after 9.am, and clear at 6.pm... it MUST be something released on a body clock timer, surely ???
It happens every day that I have the awful fatigue symptoms, but those symptoms, thankfully, are not every day... the frequency varies... could be every day for three weeks to a month during a reduction , but once stabilised again they can alternate, or be for 3 or 4 consecutive days, then disappear again. No rhyme orcreason, no dietary or activity change, my life is v predictable.
Just to say, after initially posting this and talking on here, I moved my dose (currently 9.5mg) time from 6.00am to around 9.00pm and have seen an AMAZING improvement. I still sleep badly tho not as often, but the difference in my daytime function is unbelievable... I've waited about 4 weeks to comment on this as wanted to be sure... hope I don't jinx it !
You may have problems later with taking it before bed - the peak level of the pred dose will be before midnight and so could potentially slow the recovery of the adrenal production of cortisol (the trigger is a low level of steroid about midnight) but it doesn't always happen, A change this effective can't be ignored though.
Oh no... this condition is just a game of snakes and ladders ! But thanks for the info, my adrenals have been dodgy already, early in terms of dosage I know , the rheumy agrees with that after 3 years now with hitting a wall around 10mg. Oh well, onwards and upwards... i started my first reduction after dose time change, last week
At 10mg it really is unlikely to be the adrenals forming the wall! They are likely to be fully suppressed - if you are having problems it is the PMR and it has, as is the case for an awful lot of patients, lasted well beyond their magic 2 years ... Why don't they just accept that? Do hope Dasgupta's work bears fruit!
Hi JC, just wanted to say hello and welcome. This has been a really interesting thread to read so thank you for starting us all off! Some great advice and insights, wish you well with your 'journey' with this exasperating illness.
Thank goodness for this group. I too get the 'stunned slug' episodes about 9.30 and blurring of vision. Come alive about 6 pm etc...really stuffs up my work life as I work remotely with a 3 hr time difference - everyone in the office is halfway through their day and I want to go back to bed😴
So sorry for you that you have this too, but for myself, it is somehow reassuring... it might point to something useful in the body clock emissions? I am trialling moving the dose to nights
Just to say, after you posted this and with awful lethargy hitting around 9.am and lasting through till 6pm where it lifted like clockwork, I moved my dose (currently 9.5mg) time from 6.00am to around 9.00pm and have seen an amazing improvement. I still sleep badly, but not quite as often, and difference in my daytime function is unbelievable... I've waited about 4 weeks to comment on this as wanted to be sure... hope I don't jinx it !
these comments have been amazing to read and so in tune with what I am
experiencing. I took my pred at 4.30 this morning as I was awake anyway and took it at 9 tonight in the hope that I will be more alert for a 12hr shift at the hospital tomorrow
Did you try changing your dose time.. I did,ans it's been AMAZINGLY EFFECTIVE... i waited to get back to you to sure it wasnt a shortlived fluke, but I've had consistently better energy and mood with the new time....hope saying this publicly doesn't jinx it !
I am trialling that too, I will take half tomorrow's dose tonight, the remainder tomorrow at 6.00 am, then full dose tomorrow bedtime as suggested, this gives a slightly extra dose initially so I am aware any sudden recovery might just be that. Fingers crossed for us, and you for a 12 hrs shift !
After nearly 4 weeks of having changed my dose time, as discussed in this thread, it has made a massive difference to the sudden fatigue effect ( previously coming down like a curtain at around 9.00, lasting all day and lifting completely and like clockwork around 6pm). It is AMAZING. I feel like a person again.
This is what happened to me. Went up from 9mg to 15mg as symptoms came back with a avengence. then reduced to 10mg which did not work for me. I am back on 15mg then going down after 3 weeks to 12.5mg. for 3 weeks. Then 10mg 6 weeks. Following 6 weeks going down 1mg at a time. I also have brain fog and feel drained 😩
hi jenny. I’m 5 months in. I noticed that you’re down to 10mg already. That’s quite a quick reduction.
I started on 15 mg & then when my own GP went on holiday a younger doctor dropped me right away to 12.5. Symptoms came straight back & although he wasn’t happy I went back to 15mg.
I dropped to 14mg before Christmas but then got that flu type bug that’s going around so stuck on 14.
I dropped to 13mg 10 days ago & then the fatigue set in again.
So as an experiment I took 15mg for 2 days. I’ve felt much better.
You mentioned a bit of brain fog.
I definitely get this when I’m feeling fatigue, I’m honestly not sure if it’s just tiredness or if it’s a symptom of PMR.
I sit on a couple of policy forums & regularly get detailed papers to critique or even write.
I’ve had one sitting for 2 weeks now & I haven’t written up my response as I’m worried I’ll miss something. I really don’t feel my brain is as sharp.
I’m going to tackle it today as I’m feeling better after the 2 days at 15mg.
I rarely offer advice on this forum as I’m learning myself, but can I suggest that you have a chat with your doctor about tapering more slowly.
The general consensus here is that dropping 1mg at a time is best, to avoid flare ups.
Thank you again for more responses, all are really interesting. Just over an hour to go of the shift and I'm not too bad but very tired. This morning slightly dizzy for a few hours but no brain fog. Will definitely continue with the evening dose for now.
Yet another reassuring post. You tell the so called medical experts these things and they look at you like rabbit in the head lights. You start to question your own sanity but NO ! this is our PMR journey.
My eyes are still dry and blurry despite trying over dozen different drops and using 3 times a day. I’ve been back to optician several times and despite tweak in prescription still struggle to focus. I struggle to do embroidery now and cannot knit for long as it hurts the shoulders.
Brain fog is crippling me. I’ve had CT head scan but it’s been nearly a year now since I was referred for full cognitive assessment. Whilst I know there is little that can be done, it will at least be medically proven.
Like so many of you, my daily routine is ruined. I’ve always been a lark but cannot get into gear until c. 3pm. Most productive work is done in the evening and no matter how hard I try, cannot seem to get to sleep before 2-3am. This would be impossible if I wasn’t self employed but even so reckon it takes me 3-4 times longer to get things done.
I’ve totally given in to PMR (as advised) and whilst the steroids do their job on the most part, they come at a very high price. I keep having to remind myself PMR is not a killer and if lucky it will pass.
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