Hello everyone, Question: I've had to increase from 5mg to 6.5mg, been on 6.5mg for the past week. I've been blaming it on to the hot weather and humidity, but now thinking that my awful sweats (feels just like the menopause) is in fact the Pred. Has anyone else experienced this ?Making me feel quite awful and horrible headaches for a week too.
Anne
Could be adrenals stuttering... you are in that range now -see this -
healthunlocked.com/pmrgcauk...
Oh thanks Sue, never thought of that......never happened while I was on 5.5 or even 5 come to that. Maybe the yo-yo affect...feel quite rough today. Seems 6.5 has sorted out the discomfort though. Not sure how long to stay on it. CRP was 5.4 so that's up from 2. So a little of that dripping tap at PMRpro calls it. Out for lunch with friends yesterday first time since hubs has been in so much pain. He just about managed to sit at the table for 2 hrs. Then the waiter clearing our table of six dropped a plate over hubby....mess everywhere, down his new shorts and top.
Comments from friends at the end of our meal, were, Stan looks well, while you Anne look exhausted.....that is an understatement !! I now realise how much he used to help me and we've got at least another year of this. Hope we survive to get our lives back on track. Seems like forever since we did anything worth while. Had to turn down so many invites.
Sorry to hear about accident yesterday - would have to happen to hubby...and hopefully things will get better. Hope friends offered to help you, as you " looked exhausted"!
Hope you soon feel a bit better in yourself, you've had an awful lot to cope with recently - another understatement...
🌸
Well, we all plod on don't we. I managed to get the stains out with Ace for Colours, so I was happy about that. Just read you link, no mention about sweats and headaches. Maybe the symptoms I was experiencing, aches and pains etc could that be the adrenals trying to charge up and not PMR.....hard to know !
May not mention specifically, but others have described similar in the past ..maybe not -but on the other hand….
I think you're right. Normal sweats don't make us feel rotten, this does .
Hi Anne,
I'm currently on 4½mg and so also in that area where adrenals are probably trying to 'wake up'.
I've also been experiencing sweating episodes and they've definitely been more frequent and more uncomfortable during the hot weather.
I also experience head pain with every taper and always have done as a withdrawal effect and it's definitely made worse by the heat too.
Hope you find a way to sort things out and you can find more rest time for yourself. You're having such a tough time but things will hopefully settle down stabilise eventually.
Thanks Heather.....we'll get there. Good to know it probably is the adrenals.I'll message you with news after going to hospital next Tuesday to see Pre-
Assessment team. Never looked forward to going to a hospital. Praying they give us some idea of date for surgery XX
What an upsetting experience. I hope the restaurant waived your bill!Nothing much to add that hasn’t been said already. I am suffering alongside you on 6 mgs. So much worse than last time with PMR alone. There seems to be no avoiding this bit. I am not increasing because I think it just delays the inevitable. Sending love and hugs my weary friend. ❤️
Ah, bless you. Horrible isn't it, hate feeling this way as can't put my feet up. Bless him though hubs is always telling me to stop. Feeling a little better as the day has worn on. Took one Solpadeine and one Paracetamol for headache, they've worked. Strange how our bodies react, I felt fine getting to 5mg. Really hope my adrenals are starting to work again. Sue sent me a link that was interesting but didn't mention hot sweats. I don't sweat even when really hot due to weather. I kept thinking it was the humidity. My hair is getting worse again too...looks a blinking mess. Jen popped down to give me a blow dry still can't manage it.
Nope no offer of reduced meal, which I thought was bad but didn't want to rock the boat as my two friends kept saying it was an accident, which of course it was. But an offer or even free dessert would have been nice. Never mind, hubby didn't seem to care. He didn't have to get the stains out though did he. Won't be going back there in a hurry. lots of love X
I would get my revenge in a bad review, if possible, it’s outrageous! My hair has gone like candy floss. I am going to get it chopped. I don’t have sweats, I did with PMR DRIP, DRIP DRIP so embarrassing. I sat with my feet in a bowl of cold water during the really hot weather - it cooled the blood. On we go………
Yep, onwards and upwards as they say....whoever they are haha X
That’s not good -they should have offered you some recompense -accident or not. But they have lost your future patronage and recommendations.
So so sorry to read this hope things improve for you both
Evening Anne, great that you managed to get out with Hubbie, but then not good that everything spoilt by an accident by the waiter. They should certainly have offered to pay the cleaning bill and or a full or part reduction in the bill.
On the same dose as Kendrew and couldn't decide whether the sweating was the abnormal temperature or the PMR deciding to play silly whatsits. I've pretty much gone for the abnormal temperature as things seem to have settled down again.
Not surprised your friends thought you looked exhausted, given what you have had to cope with, hopefully you will manage to find some "you" time sometime soon.
Thanks for your comment. Off to bed. Usual time for me these days. Woken quite a lot in the night when hubbies reader goes off alerting him that his blood glucose is too high or too low, he goes into a deep sleep and doesn’t hear it. Thank goodness I have a baby monitor and a light sleeper. Oh the joys eh !!
Sorry to hear that Staplehurst, it certainly doesn't make life easy. I've just come down from 10 to 9.5 over 5 weeks, this last week I started feeling awful, no sweats, but sore legs, headaches, fatigue, feel like I've run a marathon, so I took myself down to the Drs and had a blood test, yesterday results back, normal, no raised inflamatory markers, so I've concluded my problem is withdrawal symptoms. I haven't had contact with my Rheumatologist for several months, he was going to call me about 4 months ago to see if the headaches etc had gone and at that stage said there was something he could give me to help me reduce off prednisone, so am going to email him. Good luck to you, this site is so helpful. Janis
Morning, Like me you are going very slowly. However, I still had aches and pains. Could be withdrawal too I suppose. Seeing my Rheumy 15 Sept. I was hoping I’d be down to 4 sadly that wasn’t to be. I think tomorrow I’ll go back on 6mg. Good luck.
Anne
Oh it's so debilitating, it's such a help to share symptoms and problems, we have nothing like this site in NZ, I really appreciate you replying to me, such a moralle boost to know others are in the same boat and so supportive of someone on the other side of the world. We've had a sunny afternoon for a change, such a wet winter, and very depressing. At least we have no flooding where we are in the North Island. The weather certainly effects your mood and mental well being. Good luck to you, hope your appointment with Rheumy goes well.Janis
Lovely to chat with someone in a different country. Our summer has been brilliant, but a couple of days far too hot at 40c....us Brits aren't used to it. Today is lovely without the horrible humidity. A friend of mine visited NZ a few years ago and loved it.
I do hope all goes well with your poor husband and you too.
I'm always being told to take care of mysef too. Hard isn't it ?
Kindest regards
Anne
You have a lot on your plate, it is hard, I don't have it as bad, but my husband has metastatic melanoma, one brain tumour removed 18 months ago, but second one on brain stem, so surgery not an option at this stage. 6 weekly infusions of keytrudaand ct scans, blood tests etc etc! Now biopsy on pancreas to determine whether or not spot is melanoma or something else. It is on going and stressful. I have to stay well as hubby not allowed to drive. Sorry, you are much worse off, but it helps to unload. Janis
Janis, your husband sounds so much worse off then mine. At least once my hubby has both of his hips replaced he should be back in good working order....he'd better be haha !! I can't keep up all the work and looking after him too. His mantra is 'Put the kettle on' surprised my kettle hasn't conked out .
Hope your hubby doesn't have to wait too long for his hip ops, makes such a difference to one's life, I had first one 3 years ago, just a couple of months before my husband was diagnosed with advanced melanoma, tumour under left arm and tumour on right ribcage, then two months later I developed pmr, I'm sure stress had a part to play in that. You won't know yourself when hubby's back on deck, in the meantime look after yourself! I know it's easier said than done, my husband also has vascular disease and can't walk very far now, can't help mow the lawns! I've got to the stage where if I'm not feeling great, I'll leave them, never used to do that, as I like the place to look neat and tidy, always use the catcher! But I do enjoy the exercise, takes me an hour and a half to mow. I usually split it now half one day and half the next.We are coming into springing NZ, had a hot summer last year, so who knows what this summer will bring!
Next thing we'll be complaining because it's too dry!
I'd say it was unlikely (though not impossible) it was withdrawal - except in the sense the dose is now a bit low! The blood markers can lag behind an increase in inflammation for some time, up to months in some cases. There must be enough inflammation present for long enough to stimulate the liver to produce the proteins which lead to increases in the numbers.
Thanks for that PMR pro, I'll stay vigilant.
Have you tried searching on ‘sweats, or sweating or head sweats’? I’ve joined in a fair few posts about it! I sweat so badly…hot& cold weather makes no difference. The sweat literally comes out of every pore on my head & pours down my face! We don’t go anywhere inside in public, no pub, restaurant, cafe or meeting friends for 3 years now. I always have an old tea towel handy. When the sweats start, if I’m not careful it can stream into myeyes&wash out my contact lenses! At night it’s full body sweats. I get dehydrated a lot, too, & have to watch for that. At 15mg it was dreadful, at 7mg (atm) it’s not a lot better…when I managed to get to 4mg it was a lot better, but doctor put me back to 10mg because of the new illnesses I managed to start since PMR began. Currently on an 11 month’s wait to see a specialist.
Morning, Mine aren't anywhere near what you're suffering. I get damp at the bottom of my neck, hairline and arms.....nothing more than that except I don't feel good. I've just taken 6mg this morning and will see how I go. I feel the headache starting already. Never a bad one but do need paracetamols before it gets hold. I do think my problem is withdrawal symptoms. I didn't feel this way on a high dose. A lot cooler today so far.
Oh, right, well that’s good, yes, mine are very very bad…I’ve never been a sweaty person & had a very early hysterectomy & was over the menopause quite young!
Have you ever tried sage extract? jinasc used to swear by it.
Last summer I had head sweats for the first time( 2 and a half years on prednisone. Sweat just ran off my temples, I NEVER have been a sweaty person. I have a large garden to care for and spend a lot of time outside working especially in the spring, summer, autumn.
Snap…have a large garden & it’s a definite hobby of mine, except now I garden with a tea towel handy!
Hi Pixix, and I must say I don't have the energy to do what I used to! Perhaps when this continual wet weather ceases I'll get some enthusiasm again, very frustrating! Or get over this pmr! Oh to feel completely well again, nearly forgotten what it's like.
We have a dreadful drought here, & most people are not allowed to water their plants with a hosepipe. Quite the opposite to you! Meanwhile, I’m collecting diseases & now have 9 confirmed diagnoses & two pending, but must wait 11 months to see a rheumatologist! Take care, S x
Oh you poor thing, so hard when you can't get inn to see anyone, our health system is in a terrible state, under staffed, under funded, so waiting lists are long, thank Goodness I didn't cancel our health insurance, nearly did, and although my husband's cancer treatment is funded, there are some scans we have to have done privately. I wish you all the best, but such a long time for you to wait. Our last summer was very hot and dry, huge cracks in the paddocks and our lawn, so we did really need a wet winter to bring the water table up, but now I'm over it.. should start improving from now on. You take care.Janis
I see you and I came down with this complaint about 2 months apart, I was October 2019 and you Dec 2019. I was 69.
I think we are in the same boat, both PMR timing & health service problems! I had private health insurance for 20+ years of working, but then was made redundant, & retired soon after. I was lucky, though, my husband’s bowel cancer scare was OK, he ‘just’ has Crohn’s disease or IBD…can’t tell which until he has seen a consultant & had a test…yes, you guessed it, 3 months wait so far & not even an appointment date! They can’t start treatment until they know which disease he has!! I managed to get down to 4mg when I only had fibromyalgia , osteoarthritis & PMR to handle, it was easy then. But back to 10mg when other things arrived, & now on 7mg, heading for 6mg in a weeks time! We live in a small National Park full of animals & beauty called the New Forest in the south of England, so understand the paddocks etc! Outside our garden fence we have deer in the woods!
Sounds lovely, English countryside always looks so beautiful, I would love to visit, but may have to make do with TV programs, I love watching a place in the country and seeing the beautiful countryside and lovely old cottages and barn conversions etc. It has always been a dream to visit my great grandparents birth places, England, Ireland and two Scottish. All immigrated between 1850s and 1860s. 9.5 is the lowest I've managed, a lot of yo yoing because I was trying initially to reduce 1mg every3 weeks as advised by rheumatologist, absolutely impossible, if I'd seen this site a lot sooner I may have had more success. I'm struggling at the moment and wondering if it is a flare, sore legs, neck and shoulders, headaches, tired. We have our two little granddaughters and their 2 pet day calves for a week while our son and daughter in law are having a holiday in Fiji. The girls are very good and no trouble, I just have to be on the ball mixing milk for calves and feeding kids! . We've been quite lucky and used our health insurance numerous times over the past 15 years, my husband has had three artery grafts for his vascular disease and I've had several minor operations, so have had our money's worth.
Ah…look it up sometime, The New Forest…it’s very very old, steeped in history. There are thousands (literally!) of animals who have free range & grazing (well, owners have to pay a fee to have them out there)…ponies, mainly, but also donkeys & cattle. In the autumn they put pigs out to eat the acorns as they poison the ponies. There are no boundaries, except outer cattle grids & the animals are all over the roads & have right of way!! Hold on to your dreams, they may yet come along. We had a long trip to NZ planned, visiting both islands, then Fiji (husbands ancestor was a missionary to the Fiji islands when life started there)!! But it’s very unlikely now. Covid stopped us travelling…then I gained 9 new diseases & now an 11 month wait to see a specialist , as I probably mentioned! We missed our Ruby wedding anniversary trip (no cards, no presents) etc etc…not complaining, many lost ‘years’ & we were very careful, many lost family & friends. Here, everybody is back to normal…apart from us…well,that’s how it feels when we are the only people still wearing masks in places!! LOL! Take care & slow progress in tapering is good. S x
Kiwisufferer2019
Don't forget the Rufus Stone .. and the oak trees for Naval ships
new-forest-national-park.co...
newforestguide.uk/history/n...
My childhood days....as Hampshire born and bred - as goes the song -
modern lyrics with reference to the Spinnaker Tower... not sure I approve though 🤦♀️although as I've migrated to Dorset not sure I can complain.
LYRICS -
"I’m Hampshire-born and I’m Hampshire-bred
I’m strong in the arm; they say I’m thick in the head
Oh but I’m Hampshire through and through
I wouldn’t care if anyone knew
And my heart is tougher than an English oak
And anybody could tell you why
Though I say it with a tear in my eye
I know I’ll never get closer to heaven
Till the day I die.
If ever my wayward footsteps
Should lead me to far-off foreign shores
I know that my heart remains here
Among the green forest and purple moors
Cos I feel something calling me back
Way over there on the downland track.
Because I’m Hampshire-born and I’m Hampshire-bred
I’m strong in the arm; I may be thick in the head
Oh but I’m Hampshire through and through
I wouldn’t care if ev’ryone knew
And my mind is sharper than the Needles stack
And anybody could tell you why
Though I say it with a tear in my eye
I think I’ll never get closer to heaven
Till the day I die.
If ever I lose direction
I know I can find my way back home
I’ll follow the old straight track
To take me to England’s cornerstone
The salty tang of the Solent sea
The only perfume there ever need be
Yes I’m Hampshire-born and I’m Hampshire-bred
I’m strong in the arm; they say I’m thick in the head
Oh but I’m Hampshire through and through
I wouldn’t care if anyone knew
And my soul flies higher than the Spinnaker Tower
Anybody could tell you why
Well I say it with a tear in my eye
I know I’ll never get closer to heaven
Till the day I die.
I said I’ll never get closer to heaven
Till the day I die."
Ha ha…never seen this before…wonderful! I’m Gloucestershire born & bred, probably why I haven’t seen it! But we were both in the royal navy, links with Portsmouth, & the company I worked for for 21+ years had its UK HQ right opposite the dockyard gates, & I had meetings there once a month! S x
Thanks for those links Dorset Lady I will enjoy reading them.
Wonderful history!
I certainly will it sounds amazing.
How awful! this is me with the sweating ,i have had terrible sweating right from the start with Pred, My DR would not have it . So on my next visit i took the leaflet from the box to show her it was a side affect ! Sadly i think until we are off them or very low it happens with some people . ITs like having your own boiler ! Sorry to hear this , at least your not alone🌷
Thanks, I knew I'd receive a few replies where others are suffering too. My eyes go up the creek too and feel watery and heavy.
I'm having trouble with my ryes good, especially reading! Very frustrating.
Dry eyes - make sure you consciously blink, we tend to forget to do so when reading. And artificai tears or a liposomal spray will also help a lot.
Thanks, yes I've got drops for them and they do help.
I find a spray you spray onto the outside of your eyesreally helpful - don't make everything smeary.
Thanks for that, I'll ask the chemist, hopefully we can get it in NZ.
Certainly can get Optrex -optrex.co.nz/eye-care-tips/...
..and probably Eye Logic which used to be Clarymist -had a friend who worked for that company in Oz)
- on Amazon if not in pharmacy
I have been trying to blink more today and it has made a difference.
Get up and leave the book or screen for several minutes every hour too, look at something a long way away. That also helps.
I have experienced the hot stuff. I am 67 so it's not menopausal. Weirdly it very often kicks off at about 7-45 / 8.15 pm. I can almost set a clock by it. How strange this illness and drug regime is.
Certainly is. I know a lady though that still had hot flushes into her eighties. Menopause that was.
I'm 72 and still have the odd hot flush!
I have a stitching chum who still gets it at 84.
I'm on 7mg (reduced yesterday from 8mg). I'm instructed to reduce by 1mg every 6 weeks by rheumy. At my last appointment, last week, he asked if I get night sweats and I said yes I do, but not every night. I've noticed it's worse when I've had a few glasses of red wine...I asked him about the adrenals kicking in and shouldn't I be reducing more slowly. He said they will have already kicked in by now. This contradicts everything I've read on here, but I didn't dare argue with him!
1mg is too fast for me. I prefer the slower pace of 0.5mg per month. I'm back on 6mg today. I will stay on that for 2 weeks and then drop to 5.5. It's when I reached 5mg I had pain, so will stay on each mg for a month as I did before. Perhaps docs and rheumys should read the posts on this forum to get an idea of how we feel and the tapering structure.
Are you a man or lady ? Men certainly fair better than women being able to get off Pred much more quickly. My brother in-law was diagnosed way after me, he's been off them and fine for over a year. How he managed to get PMR is beyond me. He has a gym in his home in Spain, exercises every day and never touches carbs, his weight is good. He does drink red wine though, but how much I've no idea.
Oh dear, another one with a magic crystal ball….... just a thought, you might find reducing by 0.5 every 3 weeks a bit easier…but you’d still be adhering to his instructions of 1mg over a 6 week period…
… as the old (but totally un PC) saying goes ‘more than one way to skin a cat’
Thanks, I'll see how it goes from 8 to 7 but I'll definitely try it from 7 downwards.
Oh dear - what rubbish! For a start they don't "kick in", it is a slow and gradual process. And the most recent work from Imperial in London suggests that as little as 2mg pred is enough to function on day to day and above that there is suppression of the adrenal production of hydrocortisone. I do wonder where some of them learned their physiology! Or in what century ...
Hello I do sympathise with the sweats as I’ve experienced them for nearly two years now when I was on a higher dose of pred and still at 6mg. I seem to spend half my evening in our hall as it’s cooler than the lounge! Rheum took no notice and GP prescribed anti depressants which didn’t help so I stopped taking. It is a side effect of pred and/or GCA/PMR that has gone on the longest. Could be worse but it is frustrating. All the best x
Hi, I’m now on 7 mg and was also blaming hot sweats on menopause but have realised they are different to the hot sweats I was getting with menopause and now feel they are prednisone related. Also having headaches on and off and tired easily ( been tired forever though so not that unusual!) . Was planning to reduce to 6.5 early September as will be 6 weeks of 7mg but now have my second hand surgery on 8th September so likely to stay put for a couple of weeks extra.
Probably a good idea to stay put for the moment. I was so happy to reach 5mg with no hassle, but after a week in I was wrong. Didn't want to go back to 7 so met halfway with 6.5mg and today 6. One minute I think I should stay on 6 for a month, next minute thinking maybe 2 weeks is long enough, then 5.5 then try 5mg again. I really don't want to stretch going into 4 yrs, but who knows, only the blessed PMR/GCA I guess. Feeling quite good today. Hubby been take off to watch Charlton, with daughters father in-law her husband and one of her sons. So hope he's enjoying his outing. Me I've been out with daughters mum in-law....lunch and a spend up, thoroughly enjoyed it too. No sweats and no headaches.
Lets hope you stay free of headaches and hot sweats 🌼
A day out with retail therapy, so good for you, gives a real boost to your whole wellbeing. I went to the movies last week, Where the Crawdads sing, didn't really feel like going, but lovely daughter picked me up and I thoroughly enjoyed the evening. Gave me a real lift. The movie was very good too.
Not heard of that one. Daughter Jen is booking tickets for a Motown show Four Tops at our local theatre....love that music. Hubby was in a bad way when he got home. Legs hips were so painful from sitting in car, quite a long way from where we live, then in wheelchair watching the match. Today he's suffering. I thoroughly enjoyed my outing.
No idea why, but last night another one of those nights I didn't drop off until 5am this morning....what a long night that was. Reading, telly on and off. Gave up in the end. Now to start another busy day looking after hubby etc.
Oh my good I'm feeling the same the sweats are horrendous in fact worse than my menopause just running down my face very embarrassing worse at night plus pain around my kidneys area will have a look at link ! At the moment look as if I've done a marathon!!! I wish !
Morning, mine seem to have gone at the mo. Since I dropped from 6.5 to 6. I used to notice that headaches and sweats would come on an hour after taking Pred. My sweats are no way as bad as you’re experiencing. I got them when I first started on Pred in 2019 then they went away. Maybe part to do with the heat too
Well I guess in the winter I shall appreciate it I won't need any heating on ! 🙄
Advice needed
Statins/PMR
Hello, PMR newby
Travel and PMR
