Hi Everyone, thought I would tell you about what has happened to me over the last couple of days. I have been travelling quite well on 6 mgs of pred and tocilizumab jabs weekly and some girlfriends invited me to come along with them to “The Salt Room”. It sounded fab, described as a cure for all sorts but I am not an alternative healing girl but my friends are fun and I went along with them. At this point I need to explain that Western Australia is doing well with COVID (at the moment) and we are able to get out and about and we are grateful for that. It was a different, all of us in a room, reclyning and relaxing to gorgeous music while a blower spewed micro salt all around. I don’t easily relax and in my head were the words “shut down, shut up, relax, stop thinking”. and eventually I did. 45 minutes later we were out of there and enjoying lunch at the pub over the road. I didn’t really feel any different and went to bed with the usual routine ... pred and yogurt out for the 2 am wake up dose. Thing is, I slept through and woke up at 7am ... AGONY!!!!!! I have been quite smug about how well I have been doing, even slightly hopeful of perhaps, maybe, possibly ... remission. No way. If ever I was brought back to reality and caution, this was it. So, took my 6mgs at 7am, followed by 2 panadol and then a celebrex, yey Gods!!!! Not allowed. By 7pm the next day I was ready to speak. 24 hours later and after a return to routine, I am back on the horse. Moral? Just when you think you are doing well, well perhaps you’re not! Thank the heavens for prednisolone. Long post but I wanted to share.
The Salt Room ...: Hi Everyone, thought I would... - PMRGCAuk
The Salt Room ...
Upside was ... the Salt Room was so relaxing that I slept through the night, something I haven’t done for months.
I used to find that I was a lot less stiff in the mornings if I'd had a restless night - a good night's sleep meant a struggle to get going.
What is this sleep thing everyone talks about? Me and my gp have decided a sleep clinic is my only hope other than a very rapid drop.of pred which neither of us is inclined to try as a cure for insomnia. So at 23 months of diagnosed and treat pmr and managing it with 6mg of pred I manage at best a regular 2 hours a night. I occasionally get three but at least twice a week I don't get any sleep at all. I think I have tried everything now except a sledgehammer.
Who would administer the sledgehammer?????
Probably ian tbh although I visit the doctor that often she might be ready to take the next step!!
That’s me, never had three hours since starting pred 18 months ago, now on 8.5 from 60. Thank good for books...
yes audible books and my phone books are things i do othewisr you just lay there tossing and turning or wandering the house or quilting in my case. I also have done work at night but do have to recheck it in the morning.
I Sleep 6 to 7 hours each night! No insomnia from Prednisone -- I am
fortunate it seems!
Very jealous. I would settle for just one 7 hour sleep every month or so!! Not greedy!!
Yellowbluebell, have you ever tried amitriptyline? Prescribed by my rheumatologist for a really sore neck (not pmr/gca related we think), but she said the upside might be a really good nights sleep. Told me to take 1/2 and if not enough, a whole one. Well I only need 1/3 an hour before bed. You might require a bit more but worth asking your doc about. It was originally prescribed for depression, but now mostly used for pain/sleep. My son (physio) knew of it immediately and said it is widely used in his circles too.
I was already on it when diagnosed with pmr at 150mg due to depression and also a shoulder injury that had involved 10 surgeries. (Both the reasons you mention)They did try upping it to 200mg but no difference. Eventually we decided with my orthopedic surgeon it wasn't really helping the shoulder and came off amitriptyline after over 14 -years and began another antidepressant mirtazipine which is also supposed to encourage sleep. Again for me this didnt work on either my insomnia or depression. After my gp took specialist advice I am now taking venlafaxine and mirtazipine for my depression but we are no nearer sorting the insomnia!! The shoulder replacement (no 9 surgery) isn't sorted and is managed with tramdol and cocodamol which should in theory give a bull elephant a good night's sleep so they are blaming the pred.for the insomnia and until I can ditch it, it would seem I am fated to live on 2 hours sleep. I have also used OTC and herbal stuff and have an array of sleep teas to be proud of. We have also tried melatonin. Other than illegally using cannabis I cant see an end for now. This isn't an option as I am a barrister who is still working!! The two things don't really mix well although believe me they have been discussed and considered. I think my body has kind of adapted to its two hours and as long as I try not to do too much too often its coping, for now🤪😜. Sorry about the long reply and thanks for the suggestion. I am happy to try most things no matter how odd or unlikelyxx
Oh you have been through the wars. My suggestion sounds pitiful in hindsight. Isn’t it amazing how our bodies do seem to adjust to whatever is thrown at us, within reason of course. I really feel for you ... I hope your shoulder settles down, I know what a bugger that is. I cannot imagine the insomnia you cope with, I too find sleep challenging, but nothing like your situation. I’m thinking of you.
Chaucer here, I’ve had PMR for 2yrs now and down to 5 mg of Prednisone. For sleep I take 6 mg of Melatonin, 25 mg of Benadryl and 1 mg of Lorazapam, sometime I cut that in half and then I can sleep, my Dr. says it’s ok. I hope you find this helpful!
Thanks Chaucer, every bit of info helps.
I was referred to a sleep clinic about 4 years ago now and was diagnosed with obstructive sleep apnea - I was waking 30 x an hour without realising (your body automatically wakes you up if you can't breathe), so never getting a deep sleep. I was given a CPAP machine which I have used ever since. I do seem to sleep a lot better generally though it seems to be a rhythm of being unable to sleep for a few days and getting really exhausted and then crashing out and sleeping well, then the cycle repeats.
Husband wears a CPAP but my sleep doesn't seem to be the same. I have been referred to sleep clinic but they arent likely to do much till i am off pred. I can get to sleep easily enough most days but can't stay asleep for more than my couple of hours.
I was diagnosed while on Pred. You wear a monitor overnight which might give some information why you are waking up.
Will chase my gp when I speak to her on the 3rd. Got to be worth a try.x
I do think that over doing it comes in many disguises, particularly at low doses when the adrenal glands are being challenged.
I don’t think I overdid it. I slept through my dose. I take my pred at 2am and it really works for me. I missed that dose and paid the price.
Ooh, yes missing your dose would do it. My point was though, that sometimes just doing Something different was enough for me 🙄
I am always overdoing it ... it’s in my nature. But this time it was missing the timing of the dose. I before realised how significant that is. Always learning. Thanks Snazzy.
Lol ..me too.
Oh dear - what a shame - did you do anything other than have salt blown at you!
New one on me - must google it!
The experience in the Salt Room was so relaxing. We did nothing else. What happened is that I relaxed so much that I slept through the night. I take my pred at 2am and I missed it. It did show me though, that taking pred at 2am works for me in terms of waking pain and stiffness free.
Well if you go again remember to set your alarm for meds! 😊
Correct!! I should do that anyway but usually awaken regardless. Just a tale of what happens when you miss your dose.
nothing to do with alcoholic drink at the pub? 😉
Haha, that was fun. But sleeping through has never happened ... the shock on waking and realising the missed dose was palpable.
I take my whole dose at 2am as well and like you it has been a huge difference in my ability to function as wake up with little discomfort.
Quite common over here. We have a "salt walk" (Salina) in the Spa gardens - you walk through a tunnel salt dripping down twisted twigs, then either go round in a circle or leave the inner hall and finish your walk outside (still dripping water).
There is also a salt grotto in the Thermal baths where you lie down and meditate for half an hour - that costs 12€. To top it all there is a salt museum.😂
I wonder if all that salt affects people with high blood pressure!!!😏
I’m still feeling “chilled out” after 45 mins in the salt room. Funny thing is, three days later I can still taste salt on my lips, and if I lick my skin. Could be imagination or normal “taste”, haha, I don’t lick myself very often!! I’m wondering if it takes time to work its way out of the system.
I've been to some 'salt gardens' in Germany and seen them advertised in Poland too
They have salt tunnels near here - supposed to be good for lungs and I thought for rheumatism. You are obviously a bit close to the 24 hours effect!
24 hours effect? Not sure what that is, but I have learnt that you have to be diligent.
The antiinflammatory effect of pred lasts for 12-36 hours depending on the person. If you are towards the 36 hours like me small deviations in timing are less critical! But I suppose 5 hours over the critical period in the early morning is a LOT!!
You know so much more than I . I started taking my pred at 2am after advice on this forum. Apparently the inflammation dumps some time early morning. It has worked for me to try to preempt that by taking at 2. I missed that and boy, did I feel it when I awakened, after such a great sleep, at 7am ... 5 hours later. It took another 5 hours and extra stuff (read meds) to get me back. Actually, I was stuffed for the entire day. Learnt my lesson.
Exactly - you have learned well! The 2am timing is proven in a study and it was the basis for Lodotra/Rayos being developed. YOu take it before bed, it releases 4 hours later so you don't have to wake at 2am 
But whether you have learned the lesson is another question! It happens to everyone at some time - everyone swears it won't happen again!!!
Well most people think I am nuts to take it at 2am. I have learnt the lesson regarding that rule, but what is this Lodotra you speak of? I will do some research. Thank you, as always, for being the font.
It is a coated form of pred, developed in Germany after the study I mentioned showed the optimum time to take pred to reduce morning stiffness in RA was 2am. The coating is designed to break down in 4 hours in the right conditions in the stomach so you can take it at 10pm (civilised) to release at 2am (less so). It was approved in the UK but use has been stopped because it is quite expensive compared to plain pred ( a pack of 30 tablets is about £25 whatever the dose). It is used in some of mainland Europe which is how I get it. It comes in 1, 2 and 5mg tablets which must be combined to make up the dose.
This is the only English language PIL I can find
drugs.com/uk/lodotra-5-mg-m...
but this is an original product information leaflet from Australia:
tga.gov.au/sites/default/fi...
I don't know if it is still available in Australia
Wow! Thank you for this information. I cannot imagine life without the 2am yogurt/pred dose. I will definitely look at this and I really appreciate your telling me. I am an advocate of the 2am wake up. This post has been all about illustrating what can happen when you miss your dose, and for me, that has been at the price of a sleepy sleep through.
no, it passed the TGA approval but they decided it was not viable to bring to market... I wanted to try it and got told that! I almost ordered it from the UK but I kept falling asleep when I was supposed to ruing back..and that still happens though not as fatigued since methotrexate (but early days). only tried twice and then a break of months and on 2nd dose again now
Good luck! Hope it works.
my gp who is wonderful in virtually everything and let's me decide on how I deal with my pmr doesnt agree with split dose for some reason. I decided I have enough control for now so have decided its a battle for another day!!
I too take my pred with yogurt as near to 2 pm as possible, I do not set my alarm but usually wake around the right time. I've found if I take it earlier I'm still ok in the morning but if I wake up and take it after 3 pm I feel terrible the next day. I'm on 7 atm. Good luck.
That is so interesting, I am exactly the same. Sometimes I awaken at 11.30pm, if I have an early night, and I go back to sleep for a while. Anything around 1am - 2am is great! The other night, after the salt room relaxation, I slept right through ... AGONY!! I will be sure to set my alarm as back up from now on. Good luck to you too.
Are you living in Poland? We went to the salt mines in Krakow and learned about how they were later used to help people with all kinds of respiratory problems, to good effect. Makes you wonder about the healing qualities of salt. Did nothing for me, that I know of, except make me sleep soundly ... to my detriment! Lol
No, northern Italy, part of Austria until the end of WW1.
We've been there, hubby and I, about three years ago. Loved it! I can remember all those steps down!!! And the mines were magical.
We went down in a tiny lift, all squished in like sardines. Yes, it was beautiful. And that stunning room with all the carvings in the salt.
Yes, truly magical. We came back up in the lift, I was pleased about that! Didn't fancy the climb up. I think I counted 100+ steps! Before my PMR days - just as well! 🤣
Eek! I won’t be doing that in a hurry. So it still lurks then. I wonder what the trigger was......salt? Or the journey.?
You were having stressful thoughts during the experience, maybe you just knew it was too much.
I am following on your heels with Tocilizumab, down to 10 mgs. I have been advised to have a Synacthen Test at 5 mgs ( Adrenal function) have you?
Just read the whole thread, so I know the answer. X
Hi Jane, the trigger was sleeping through the night and not taking my pred at 2am!! Woke in agony. All is good now though. How are you going? I bet you are starting to feel strong and brand new? If not then hopefully in a few more weeks.
We’ve all done it. Actually the salt room sounds like bliss - I bet it really clears your respiratory system.
I still feel rough in phases but I think Metformin is the culprit for steroid induced diabetes. I still feel positive about Actemra. You are doing well by the sounds of things. No pain on horseback, that’s progress.
So far so good, but I have learnt not to get cocky!! Rugger is on the Actemra path too, she’s about 5 weeks ahead of me so perhaps she’ll pop up and give us her latest. She’s battling a self inflicted wound at the moment, hope that is not impeding her progress.
I am still waiting for my burst of energy and enthusiasm!
I know, poor Rugger.
How does Metformin cause steroid induced diabetes? I was put on that to prevent diabetes? and also to maybe reduce inflammation via Metformin apparently having antioxidnat activity?
Currently I've stopped the Metformin for a while as my liver enzymes went sky high and I didn't know why (think its Crestor but I had to restart that a my cholesterol went high after 6 weeks)
Sorry Jan, I meant just that. Metformin was prescribed to help control my steroid induced diabetes. I am finding that I feel very tired with gastric symptoms. I was made no promises about reducing inflammation . I have liver function blood tests every 4 weeks, prompted by Actemra.
Her trigger was she slept through her dose. It doesn't need to be anything more, just like missing our morning dose or taking it late like i have done many a time usually on a day when I am in court. It was just a simple sleep through although i am extremely jealous of anyone who sleeps.x
Yes, I dove in without reading the rest of the conversation on the thread.
we all do that!!
There seem to be a lot doing that recently - and it means some of the replies are very wide of the mark. It is why I sometimes read entire threads at once!
I usually do. If I see you and/ or Dorsetlady and Snazzy, I know it’s been answered so I move on. 😃
Sorry Yellowbluebell, I thought my salt room experience might have been of interest. Didn’t mean to elaborate too much on “a simple sleep through”. It was much more than that to me!
The title The Salt Room caught my eye...when my family lived in Prague we used to go.
But as I read on there was much more meat to the post. Every time I have gotten to 6 mg, I have had a flare. About a month ago it cost me some clarity in my right eye. The rheumy and opthmologist 'settled' of 12mg methylprednisolone, plus Actemra. I take 6 mg in the morning and 6mg about 6pm thinking I am spreading it out.
Would I be better off to take 12 mg at 2 am?
Hope to hear your thoughts PMRPro...because I'm kind of limping through the day. 😏😣
I understood that it was better with GCA to take your dose all in one go, to avoid the inflammation breaking through. See what Dorsetlady and PMRPro say, later.
I watched a show with Maine as a backdrop. It looks so beautiful by the coast.
I'm going to set my alarm for 2 am....take 12 mg....I have nowhere to go but up and nothing to lose. If I don't take that second six...my jaw will start telling me to take it. I have less faith in my doctor all the time. xo
I have started getting stabbing pains in my temples. I think I need to slow down. I am on 10 mgs now, working in the dark. Too cocky I think. I take Entric Coated when I go to bed.
The old mantra.....rest, pace and rest💖
These are my first breakthrough GCA symptoms since tapering and Tocilizumab.
How recently did you go to 10? Is there anything else going on? I hope one of the seasoned folks responds to you...I can only wish and pray! xo
You have become a seasoned folk with Tocilizumab. 😘
HaHa...I remember seeing a photo on this site of Dr. Dasgupta with a group of rheumatologists from around the world and Dr. John Stone from Mass General was in it.....I found the blurb on line ~~ Southend University Hospital... what a small world we all share~!!
The hospital is organising an International Symposium and Imaging Workshop on giant cell arteritis (GCA), polymyalgia rheumatic (PMR) and large vessel vasculitis (LVV) from November 22 to 24.
Among the top experts to be speaking during the scientific programme, being held at the Holiday Inn Airport Hotel, are Professor Eric Matteson and Dr Ken Warrington from the mighty Mayo Clinic in the States, Professor Cornelia Weyand from Stanford medical school, Professor John Stone from Harvard medical school and Professor Wolfgang Schmidt from Berlin's medical centre for rheumatology. Other speakers will be flying in from Japan, Australia, Spain, Austria, Italy and Germany at what will be the largest academic event of its kind ever organised by the hospital.
Now I can't find the picture~!! Time for bed here. xo
Here we are at the cutting edge of medical science and human understanding. Night night.
💖 I set my alarm for 2 am this morning and took 12 mg.....much less pain in the am....check back in later. My fingers are crossed so tight they are going to fall off from lack of ciruculation~!
🤞🏻🤞🏻🤞🏻🤞🏻💖
Wonderful! Xx 🙏🤞
Hi Grammy80, I’m surprised that you are taking a split dose. My rheumatologist said it was important, with GCA, to take the complete dose at once. She thinks I’m mad taking it at 2am, but missing that dose the other night and the resultant agony in the morning, was sufficient to reinforce its efficacy to me. I hope the tocilizumab is working.
That has been the received wisdom. However, a study was done that suggests it makes little difference. And logic says that you will only split the dose if the symptoms are returning well within 24 hours - which is a sign of returning uncontrolled inflammation. There is also a study confirming 2am as the optimum time for reducing early morning stiffness - not sure if it is in English, it was done in Germany so that might excuse her!
I can't wait to get to Boston and discuss this...not the first time I've scratched my curly hair! xo
What is the Eyes and Ears? Is it really famous?
Mass Eye and Ear in Boston, Massachusetts does have a world wide reputation, part of Mass General. If I'm not mistaken, Dr. John Stone from Mass General Hospital developed the clinical trials that allowed Actemra to be approved by the FDA in the states. He is a rheumatologist there. I will be going to the neuro-opthalmology department so don't expect to see him...xo
Aah! That all makes sense now. Forgive my ignorance. Tell me about it when you get back ( PM).
Don't be silly...forgive your ignorance??? I was an ignoramus on steroids until I found this motley crew.....the more that comes up...the more I learn. I wish I could fly over for a cuppa~!!
Yes! I wish you could too. Xx
Ever since I read this, I have been setting my alarm and taking the 12 mg at 2:00 am, Eastern Time. It is giving me a much! better day. I seem to run out of gas around 3:30 or 4:00 pm. These have been busy days....watching friends go through my closets. I'm so lucky. The less I move...the less I unpack!
Some of the things hadn't been touched in 4 years!🙄😏🙄 💖
That is such great news ... it really works for me and the proof in the efficacy of the 2am dose, is what happened to me when I slept through!! I will NEVER (hopefully) do that again! Glad your mornings are better, and long may it continue!
So...I'll be thinking of you every day at 2:00 am...it has made a big difference.💖💖
🙏🤞💖⚘
There is a lot to be said for not unpacking the boxes - and if after 4 years you haven't touched them you DO have to ask whether you will ever need what is in them!!!! I do wish I had charity shops here - I have stuff I know I will never need again ...
Me too - far too much! No charity shops either (not in this area) probably people would be too embarrassed to use them!?!
They have flea markets - where you pay more for the same rubbish!
Ha ha! Don't even have those. Red Cross bins only (in this area) - but quite a lot of my clothes have only been used once or twice (and now I've even lost weight (58 kilos) so the problem is getting worse.
Take a tuck!!!
Its more glasses and crockery I could do with getting rid of - far more than I will ever need - still have my entire 8-setting dinner service from wedding presents! Wrong set of plates for this millenium!
Who the hell cares? I have my mother's twelve place tea service "Wedding Breakfast", also wine glasses from Grandma. They only come out on special occasions but it feels 'good' to live in the past for a few hours.
There are some things that just can't be got rid of - even daughter and son wouldn't do so.
Agreed Constance. I have some very old pieces that all have a story. They are the story of our family and even though younger ones might not show interest now, they would absolutely hate me to get rid of any of it. But I also hate clutter so I am discerning.
Luckily my two love antiques.😊
I use the dinner plates - but who needs fish plates these days? Mine don't want any of it and it is filling cupboards that could be better used ...
I have leftovers from having 2 households running at the same time fully furnished and brought the stuff we were using when we finally moved.
I know - but it's hard to get rid of things you are attached to (even clothes)!
I honestly don't feel any attachment to the stuff - it is a lack of opportunity to get rid of it somewhere useful. Giving it to a charity shop in the UK meant raising funds for a good cause. Here the only options put money in other people's pockets or just chucking it away - that grates ...
It certainly does!
It does me the world of good "talking" to you - even helps my unremitting pain. You've done it/heard it all (gone through more than you deserve) and still take your time to help as many people as possible. Respect!
Our council has a street collection of unwanted furniture etc once a year. We had that two weeks ago. It is so fabulous to see the vans moving up and down the streets to collect stuff before the pickup. We put 2 really old bedside tables out at one point and they were gone within 10 minutes. Really great feeling to know they have gone somewhere other than the “recycle” truck.
We had collections like that in Germany - very useful! They have them as rubbish collections here but this year's fell victim to Covid. I think that officially people aren't supposed to take stuff from the pile!
They've stopped that in most areas (too many people picking things up). That really annoys me! Why should they stop people saving a few euros? Even if they sell them it would be better than the councils coining it in.
The Supermarkets stop people picking up things from their bins - they just get burnt later. I suppose their excuse is there may be something contaminated.😏
So true. I see some containers I would like to keep....but tell myself, "Don't open it."
If I open it...I might start pulling things out. Fortunately one of the friends helping with the closets has a specific charity in mind; it makes it a joy to part with it. xo
Yes - that's how I felt when downsizing on 3 different occasions. One charity shop told me they reckoned what I'd taken to them had raised over £1000/$1500+ at the time. It was important to have a charity shop in the right place - there was a lot of Wedgewood china and so on from my MIL and it was a small town with the sort of clientel who'd like that and pay for it.
Part of my problem is that until having PMR I never broke things!! I have full sets of cut glass that I never use! I have a lot of things here from when the flat was being used as a holiday place and children were coming. No small children to come now but the habit of using glasses that are less likely to break or don't matter is hard to get out of!
I can just see the beautiful things you speak of....and there had been a time where it was difficult for me to part with some things but at this point I'm only attached to what I need or want in my 'present life'. As our lives change I think our needs change.
One man's treasure is another man's trash. It is interesting to think of how the scales have shifted over the years. One of my sons is an absolute minimalist as is his wife. My other son simply isn't interested in anything that may have been his greatgrandmothers~! So, I hope at this sale these memories make their way into the hearts and homes of new families....who wanted these items enough to pay for them.
As for me...I'm all set. Need a basic wardrobe, my electronics and my paints and brushes.....OH YES, and all my meds. xo 💖
( I can just see and hear that cut glass though)
A couple of times I have felt the same only to have a wakeup call. It sucks.
I used to take the Rayos but it was so expensive, I just take the split dose whenever I get to bed (if I wake up in middle of night I cannot get back to sleep) and that seems to work just as well, for me. The Salt room got me thinking, I heard a
story of a woman who was stung by hundreds of bees and was completely cured of her rheumatoid arthritis (which I suspect would be similar to PMR). Of course, I'm not going to try THAT! But maybe someday they'll find a more natural and actual "cure" for all these autoimmune diseases. Hopefully.
Many swear by salt therapy, it has a history apparently. For me it was just extremely relaxing. The effect lasted for 24 hours.
Have you tried trazodone? It was developed as an antidepressant but made people so sleepy they couldn't function. Works for me.
I know exactly how you feel. I have forgotten to take my morning steroids before and was wondering what in the world was wrong with me. Once I realized and took my meds I would start to feel better.
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