Please may I sound board? As mentioned previously, I responded beautifully to steroid treatment in the first few weeks. I was taking my entire dose with dinner. However, I almost always woke up to go to the loo at least once, sometimes twice!
Taking meds at night defo interfered with my sleep. I never really switched off and eventually the sleeplessness caused symptoms of anxiety and at times low moods.
I changed to taking the pred in the mornings following the first tapered reduction. It was reduced by 2.5 (too much...I know) and all the crashing symptoms (and then some) returned. So within a week I was back on my starting dose.
My question: I know the consensus is that mornings seem to be the preferred time to take pred. I dont think it really works for me. I am 2 weeks into taking the higher dose in the mornings and I am not symptom free. I have pain at night and I am so very tired. Plus the worst thing? My face is puffy...at times i have tremendous pressure in temples/corner of my eyes (no pain) and I have eye bags to rival George Galloway (...sorry george).
Is it worth switching to taking pred at night?
I just dont understand why it worked so well before but not so effectively now. 😥
Sorry to tell you that the puffy face is a given and you will not avoid it. It depressed me for ages to see a reflection that was not me, but at least it is not dangerous.
I was told to take my pred in the morning but found I was waking early with leg pain. I then tried a split dose,2/3 in the morning, and this helped. I now take the entire dose with my main meal at about 6-7pm, I can't remember why, but I'm beginning to question this.
There is no one answer, whatever suits you. The instructions to take in the morning do not necessary apply to long term users like us.
Love the closing line. It's TRUE. We need to find what works. In my head I know the puffiness is temporary...it just sucks when each morning I have to field a barrage of questions from colleagues..."are you ok..." or "you look really tired" and my personal favourite "your eyes are really puffy"
I believe you when u mention calf pain. I feel.like my left calf wants to cramp but never fully gets there...I didnt tie it to the condition or taking steroids! Its lovely how the PMR family can share experiences in a safe space here. Love you all. X
Hi stiffjoints, some people find cutting salt helps the puffiness, as well as low carbs (I know your diet is good). I found that using more pillows but from shoulders up, so you are semi laying. Make sure you are drinking plenty too. At the end of the day you may get a swollen looking face but I can assure you it goes as pred gets lowered.🌻
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Very sound advice poopadoop. I have heard some people crave sugar...fortunately I dont. But I have been pining for ready salted crisps...which I hardly ever ate before! I shall be watching my salt intake and will increase hydration. Might try the pillow propping tip too! As always...thank you for taking time out to reply!
A lot of people find a split dose of two thirds am, and one third pm works to keep the symptoms at bay over the whole 24 hours. I did know someone who did three quarters and a quarter so she slept better.
I have never had puffy face. This may be down to luck or my v low carb diet.
I wish doctors would take you through the options of split dosage!
I'm so pleased you are one of the blessed few to not suffer from the puffy face! Although I think you might be onto something with the low carb diet!!!
I am also on low carb diet and so far no puffy face and my weight is stable within the same few pounds. I would also consider splitting your dose for better sleep. I have also read cbd oil at bedtime can help with sleep. it is expensive here so i haven’t tried it yet.
You must be one of the fortunate 1 in 20 who dont puff like a hamster with stuffed cheeks! I actually lost half a stone since being on pred...but my face thinks otherwise!
I'm hoping the split dose with help. I have heard about the advantages of cbd oil and frankincense. Might give it a try! Will update here if I find it of use..
Either way...if you feel good?!? Amen to that I say!
The reason for taking Pred in a morning is to mimick the natural way we produce Cortisol if we weren’t on Pred.
Pred can keep you awake ( l can confirm this when they added in Dexamethasone during Chemo)
So ideally the morning is best but many people tweak their dose until they find out what’s best for them.
I’m afraid the puffy face is par for the course with Pred ☺️ I’m currently sporting a chubby face (Thank You 12.5mg)
I hope you can work on a plan to suit you.
Kind Regards
MrsN
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Thank you Mrs N. It's a little tough going from "you look fine" to even close family saying "omg have you been crying" I guess I will have to get used to it and draw comfort from the fact it wont be permanent. X
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I know, it’s heartbreaking, sun glasses help but not indoors!
Bigger Hair, Earrings & Sunglasses, think Joan Collins!
Will message you later off to the Hospice, l Volunteer in at Saturday for 3hours or so x
If you feel your dose doesn’t last 24hrs then by all means split it - usual recommendation - 2/3rd am, 1/3rd bedtime.
As for not feeling as good as you did on original dose - are you trying to carry on as normal just because you felt better? Unfortunately you can’t - you still have the underlying illness - all the steroid are doing is controlling the inflammation caused by the illness, they are not doing anything for the illness itself.
I sent you a link to my post for new patients in a reply to your first post - perhaps you should read it through again - I know it’s a lot to take in first time around, but it does give you an idea of how to cope.
I will definitely be splitting the dose today as recommended. And yes DL...not only did I carry on as normal, I actually over compensated because I felt so awesome. I pushed myself over the limits whilst being sleep deprived and didnt realise the consequences till it was too late.
I have learnt my lesson! I think i shall be printing out the link you gave me initially and keep visiting it so that I can fully accept my life will have limitations...and it's ok to be selfish and put myself first on occasion.
Hello again. Puffy face - most of us get this and with dark rings. I could barely have any salt, even hidden, without my eyelids becoming heavy. Some people do report feeling the fat deposits (just remobilised) as uncomfortable in the face and neck.
Re timing- I’d change only one thing so you know if the timing or the dose reduction is the thing causing the trouble. Personally I’d stick to what works. You can revert to mornings when you are at about 5mg and on an even keel.
Night pain - if I can’t sleep or am in the midst of withdrawal I get fibromyalgia. I assume it’s that because the pain is like an all over mist with no stiffness of muscle or joint and goes either with good sleep or adjustment to dose. Do you take a couple of Paracetamol?
Re energy - You need so much more rest than you’d like. You need bucket loads while the condition rolls along. As DL says, Pred is only stopping the damage; your are still attacking yourself. Most of us have to make big changes to our lifestyle.
It's a HUGE wake up call. I do take the odd paracetamol/nurofen Express...I use voltarol ointment (love the stuff)!
It's just taking time out to rest. I feel selfish in doing so. I feel guilty my sons and hubby have to suffer because of MY limitations even though they have been a tremendous support and constantly assure me not to worry!
I guess I have to find a balance. I will be more conscious of salt intake...will try to limit carbs to complex ones in moderation...and hopefully splitting the dose will help also! Thank you!
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Make sure you don't take nyrifen/voltarol at the moment. Too much pressure on your stomach. Keep the pred at a high enough dose to help the pain and other pains can usually be managed with paracetamol. I occasionally take ibuprofen but it is very occasionally. A hint to keep your skin nice and moisturised, and rubbing it in helps muscles like rubbing voltarol in ...double based gel (dbg). Pred can thin skin, dbg really helps that. By rubbing it in you are basicAlly confusing pain signals going to your brain. There's truth in the idea that mum rubbing child's knee helps!
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By voltarol I mean the gel cream in a tube. I only use it when I feel like I have "bed sores" on my back. But will try to cut down. Paracetamol I guess is the most gentle of medications in the whole bunch!
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Well going over the recommended dose knackers your liver but yes. Taken properly it helps and has few side effects. Can I ask where the bed sores seem to be? It may be something amitryptiline can help.
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I have sore spots all over my back. They are not necessarily sore to touch but ache when I move. When I have bad days it hurts to even stand under the shower let alone endure any kind of massage!
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Interesting. I would definitely consider something like amitryptiline as it sounds like nerve pain. I can't bear hot water on my shoulders. I had to change from amitryptiline and it got worse. Quite often with things like PMR that are pain related we have amitriptyline at very lose dose prescribed. Many are on 10mg and it helps them sleep.
I also take amitriptyline 20mg at moment, been on it few years, was on 50mg but the grogginess is not good during the day. the only thing it doesn't help you get off to sleep but is mean't to help you stay asleep. x
I was put on amitriptyline for trapped nerves in my neck with awful pins and needles. the 50mg definitely worked much better but I couldn't cope with the side effects, eg groggy, unable to think straight and quite forgetful. the 20mg isn't has effective but does help, like many tablets though the longer you are on them the less effective they get x
Your post reads like many in the past which fits with anecdotal evidence from this site that most of us who get this are the sort who think we have to be superman/woman to all and sundry. Sometimes we have to be because that’s life, but often we are our own worst enemy. Why is it we think that our loved must not be inconvenienced by us? We’ve ALL got limitations. If the boot were on the other foot we wouldn’t question it. It’s bonkers and for most of us, the biggest lesson of all is self care without feeling guilty. The second biggest is that we get older and don’t actually wear a cape with our underwear on the outside.
You may find that even complex carbs are too much. I just relied on carbs from fruit and veg or else on went the weight and up went the blood sugar.
As others have said, no non steroidal anti-inflammtories; contraindicated with steroids especially high dose.
I had to adjust when I took my dose 3 times before I got it right (for me).
I’ve settled on a split dose, 6mg uncoated pred stuffed into a coated capsule taken at 11:30pm, and 3.5mg uncoated pred at around 12noon with lunch. This gives me great relief of symptoms the whole 24 hours.
Morning single dose meant waking up with stiffness and some aches, 2am disrupted my sleep but taken in a split dose worked better. Finally I purchased coated empty capsules to stuff with my uncoated pred (no enteric coated pred here in Canada), and this allowed me to take my 2/3 dose at around 11:30pm, along with my 1/3 dose at lunch.
I also found that after I flared I was not able to go back to a previous dose, instead I had to increase .5mg to get the same relief. Not sure why but I’ve read this has happened to others who yo-yo’d up and down.
Noted the comment about leg muscles not quite cramping but feeling like they are going to. Try getting a bit of extra magnesium, whether though an oral supplement or through the skin (easiest way is through an Epsom salts bath or footbath). If you opt for the bath I have been told by some that their skin dries out too much. This hasn't actually been a problem for me in spite of having very dry skin, but I was told by a friend who likes to soak like this (she doesn't have PMR) that she always rinses herself under the shower afterwards. Soaking for about fifteen minutes should be enough. I've found muscle cramps respond very quickly when I have more magnesium.
I'd much prefer introducing magnesium.via the skin through bath salts compared to taking yet more pills. Will buy some today and have a soak before bed time!
Thankfully dry skin is not an issue for me. I hope it stays that way. Thank you for your kind advice Heron NS
I was told that giving up gluten and cutting out simple carbs would stop the hamster face and amazingly it did. It may just have been luck of course.
As you have probably realised, PMR is life changing and we all have to realise we have an illness, even though the steroids make us think everything is tickety boo again. Pamper yourself, give yourself a treat, relax and don’t overdo things. If you start to hurt STOP what you are doing and rest, rest, rest.
Very VERY sound advice. I need to tattoo it across my eyeballs!!!!
Its so easy as a mum and as a wife to overlook yourself and put the needs of others above your own. I love the phrase "you cant pour from an empty cup" ....me thinks I was running on empty for a while before the universe gifted me PMR.
I'm glad you no longer resemble a hamster...and bravo for cutting back on gluten. Be proud of yourself....and thank you so much for the Pearl's of wisdom. X
I gave up the gluten as soon as diagnosed and never got the puffy face. In fact people said my face looked thinner! Before I was diagnosed I always said yes to everything and was the life and soul of the party, so it was a real shock when I discovered I had trouble getting out of bed and dressed even. I have learnt to say no, although difficult, I have also learnt to ask for help if I need it. I am actually amazed how helpful people are.
So proud of you. Hope I get to that stage. I find it very hard to say no and I always smile...no matter how stressed or unhappy I am. I need to love myself a little more...
Learnt my lesson PMRpro. Spent the last two days sleeping almost all hours...! Feeling better today. Split pred dose yesterday. Definitely slept more comfortably!
Hi Stiff Joints, I am interested in your name as I have experienced stiff joints for decades before I was diagnosed with PMR. My rheumy put me on to Meloxicam (a slow release ant-inflammatory) and that has helped.......
There has been radio silence from my side for over a year (though i keep meaning to provide an update). I've spent the last 14 months or so being an involuntary passenger on an emotional roller coaster from hell as consultants tried to diagnose (or should I say re-diagnose) my condition.
It turns out that I do not have PMR after all, though my condition is definitely responsive to steroid treatment. Tests have concluded I have ankylosing spondylitis. Since I had been unable to taper the steroids much at all, my lovely consultant obtained funding for anti-TNF biologic injections (I take certolizumab – also known as Cimzia) …which has completely changed my life.
I am now alternating between 1mg and 1.5mg of pred…with the odd occasion I take 2mg. It turns out I am HLA-B27 positive. A genetic marker which provided the key indicator to the reason behind joint stiffness and which ultimately led to a diagnosis. The anti-TNF prevents any further damage. I have hydrotherapy sessions (on pause currently due to COVID – but we have online exercises instead) to help build up my muscles and retain mobility. All are helping tremendously.
I hope you are able to find some respite to your stiffness. I think we all know first hand the limitations brought about by joint paint and the physical and emotional manifestations that come hand in hand.
If I read your post in isolation - my immediate reaction would be that you probably don't have PMR or don't have just PMR. When NSAIDs help it is almost always some other condition to blame for the symptoms.
Stiffjoints isn't the first person on this forum to have PMR symptoms, some even have GCA symptoms, that respond to pred at higher doses but they are unable to reduce the dose very far. A very likely diagnosis is ankylosing spondylitis - which many doctors think only happens in younger men. But it can manifest in middle-aged women, often looking like an early-onset PMR. And one clue is NSAIDs help.
I really hope medical professionals learn from.the wealth of experience captured in this forum PMRpro. I honestly believe some of the posts here could be a viable form of data!
I think one of the real errors is that there were suggestions in the past that NSAIDs can be used for "mild" cases. If NSAIDs work - it probably isn't PMR as we mean it. If NSAIDs don't work, the chances are the patient will just go away and not protest until they are far worse - and many older patients will just accept it as "old age" even now.
We are a very different generation, our expectations in old age are much higher and we are often much fitter than our mothers were, if the doctors wanted to listen to us they coud do a far better job. Used judiciously there is little wrong with pred for management - but they don't. They (especially GPs) rush at diagnosis, say it is PMR and start steroids. That's fine - except it isn't always and even if it is, their next action is to rush the patient off pred long before they are ready, creating other problems. Treating the patient not the textbook would be a good start!
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I don’t know what to do anymore!
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Do I fine tune my Pred. dose?
