I am new here so to give some background. I was diagnosed with PMR 1yr ago. I started on 15mg of prednisalone and tapered down to 6mg by May this year but after a flare up my doctor put me back up to 10mg. I am back at 6mg and just small bouts of pain but I think it's my Osteoarthritis hard to tell the difference. Cant walk very far pain in my buttocks.
My main problem is the many side effects from moon face, excess weight, mood swings, hair dry and curly. However recently I have started having hot flushes and sweating which is really getting me down. Can anyone relate or advise please.
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Deneez99
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Hello, you can guarantee many of us have been there!Some side effects you have to put up with, some you can change and some you need to make changes to allow that phase to run its course.
The round face is in category one and comes down to removing mirrors and keeping your longer 🙂. However, it does go!
Weight management has simple rules, very low carbohydrate, good fats and oils, protein and lots of fruit and veg. Healthy eating doesn’t cut it with Pred, it has to be low carb. Even starting on 60mg, eating this way meant my blood sugars were good and I didn’t put on weight. Lots have reverse their weight gain but you do need to stick at it and not sneak in daily bits and pieces. It really does work and is essential for those on Pred. It really does help to see oneself getting control of just one thing!
Sweats - It may be you are getting a bit too low in dose and your autoimmune activity is starting to show up because the Pred is not enough to cover the inflammation. Pain in the buttocks May be PMR breaking through. Sweats can be a symptom of that too but might also be your adrenal function needing to be better than it is. 6mg is below what you need for everyday life and often the glands don’t wake up immediately. This can also cause dry hair.
Thank you for your help I will look into the low carb food plan. I think I am trying to rush because I don't like the side effects mainly the flushes and sweats....
This stage can be a bit tricky indeed! If you go too fast and your adrenal function doesn’t get going fast enough you’ll feel worse. If it is your PMR flaring up and you go down too fast it’ll flare up and you risk having to go back up to a higher dose. At what dose was all your PMR pain relieved last?
I would say 8mg for period of 4 wks end of July beginning of August. Slight buttock pain on 7mg have been on 6/7mg alternative days for the last two weeks pain not getting any worse.
Drops of 0.5mg are so much easier on the body. We’re all different but many fins 1mg to much and alternate days can be a bit too much of a swing. Although the standard is 1mg per 4 weeks it is often too fast, especially if the adrenal glands are struggling. The buttock pain sounds a bit suspicious so I’d be really careful now. Although you are on piffling numbers now, don’t underestimate how much very small doses are doing, so although it seems like a short hop to zero, it can make all the difference. The mantra you’ll read on this forum is that you are not aiming for zero but the smallest dose that controls the symptoms of your long term autoimmune condition. The good news is that as you slowly go down past 5mg a lot of the side effects become much less, just don’t rush to get there.How much agreed with the GP independence do you have with reducing rate?
Due to Covid I only have telephone consultations with my GP as and when I request. She knows and trusts me to monitor myself so that's what I have been doing. To go from 7mg to 6mg should I try 6.5 a day and to do that do I cut a 1mg tablet in half x
I just want to say that Snazzy has covered everything I would have said so I won't say it again.
I will add that I suspect your buttock pain could well be piriformis syndrome - and it is not uncommon alongside PMR. There are stretches and exercises you can find online that may help. I find taking 800mg of ibuprofen (it is what is called a flooding dose) and a hot water bottle over the painful area is really helpful when it gets really bad.
Hi - for 6 1/2 you can more easily break a 5mg in half as it has a line through the middle and can be done with a thumb nail fairly accurately. Then you just add 4 x 1mg for your 6 1/2 dose and easier on 6mg as it's a 5+ 1 . I'm doing this at the moment by torch light at 6 am, then back to bed.
Likely because taking your pred a couple of hours before you get up and settling down for another couples of hours gives the pred a chance to work before you get up and need it. And saves waking in the middle of the night for the 2am dose approach.
Hi PMRpro.... my pred indicates to take it with food... So I've been pretty disciplined with that thinking it's gonna mess your stomach up if you don't follow that protocol however is it OK to take it without food like if you get up at 6 AM ,not hungry until eight or nine but need the pred to start kicking in ....in one of the risk by taking 10 mg without food?
By the time I get up at about 8 am the Pred is working. It's helped with adrenal insufficiency symptoms that made my mornings miserable -nausea, dizziness and fatigue.
Totally agree with you I was diagnosed a year ago at 55 hate being on steroids I’ve weaned from 15mg to 5mg hoping to be off them by February 22 too many side affects including depression which changed an otherwise happy person to a totally depression lady and nearly cost me my 18 year marriage sympathies to you with your flare up I too wish you luck to get off Pred awful meds x
Hi,Sorry to hear you have had such a bad time with steroids, and see from your other posts and profile that you have had other serious health issues from which you’ve managed/recovered.
On the flip side, steroids have given many a better quality of life despite the side effects….and personally stopped me from completely losing my sight…vision in one eye already lost and 18 months of excruciating pain before diagnosed and Pred came to the rescue.
To you Pred may be awful meds, to me (and many others) a game changer.
I hope you are off them when you expect to be, and good luck and good health in future.
Pred isn't always an awful medication - it is a lifesaver for many and for me it also gave me my life back. I had 5 years of PMR without pred and it destroyed MY life because of the pain and disabilty which led to depression. I can still remember that first day when I took 15mg pred at 10,15am and at 4pm walked downstairs normally instead of stomping like a toddler - and back up normally instead of placing the mug on the highest step I could reach and crawling up to it on hands and knees.
It was the same for me that first day I took 15mg I couldn't believe it. Now 13 months later I am just reducing from 7mg to 6. At what stage are you xx
I've had PMR a long time, a very small proportion have something like this. I got really low about 4 years ago, 4mg for months - and had a massive relapse - a new onset of symptoms not because of overshooting the dose. Then my husband was ill and then came Covid and he was ill again - and I've been in a constant flare since so back to 15mg, I'm a sole carer so have to be able to function - and I won't compromise, as much as anything because I can't. But my doctors are fine about it - part of the need for pred is to manage my atrial fibrillation which gets noticeably worse with a flare of the PMR.
PMR the didn't know you are a caregiver like me.That could be the reason iam struggling this second time around.I be tried to get past 10mg and my body says no way .It's been 2 and a half yrs for me and the PMG isn't making life any easier.I have a dr.like many here wants me off prednisone.
It could well be - it is a constant stress, sometimes worse than others, and the demands of doing things NOW are an added stress. Sometimes I wouldn't bother cooking if it were just me - but that doesn't wash does it? It is like still working - and people who work almost always have a harder time reducing the dose.
Suddenly after a stay in the regional palliative unit, I'm married to someone who wants 3 meals a day - croissant for breakfast, 3 course lunch a la Italian hospital kitchen and evening meal of a starter and plate of cold meat and cheese and often another dessert! This is after 50 years of needing to provide a single meal in the evening. It is all due to them starting dexamethasone in a (very successful) attempt to improve the appetite problem. He eats at 12-ish and 6-ish. I don't eat a meal until 7.30pm and can't eat a lot of what he eats as I eat low carb and no wheat ... If I ate like he is now - I'd weigh even more than I do.
I don't go nuts over my evening meal - but thinking of something to cook for him after so many years of a different style of eating is blooming hard work!!
Thats so funny but good he s eating well.I be been married for over 51 yrs and very lucky my husband will eat anything.Its nice to talk with someone who can relate to how hard it is being a caregiver.Thank you for your response❤️
Wow! That is one change of diet - from refusing to eat anything substantial to eating
like a horse. However do you manage? Has he at least put weight on? I didn't know a man could weigh so little as your OH and still be able to exist. More work for you. I hope he appreciates it
Don't know if he's put weight on - his face isn't so haggard at least and I think his bones don't stick out as much! How do I manage? With difficulty!! I just seem to go from one meal to the next all morning with other tasks for him in between.
He wants the sort of food he took a taste to in hospital: pasta starters, soups, yoghurt. He has never eaten yoghurt in his llife! Asked for granita - they had a machine in hospital so I had to find an easy recipe and work out how to make space in my tiny freezer. It's worked fine I'm waiting for meals on wheels but they are in the process of replacing all the reheating hobs they provide for everyone so are rather busy - hoping they will do Kalbs/Schweinebraten and that sort of thing which he likes but really isn't any point me trying to do them. My daughter ordered me a soupmaker and that looks promising. The supermarket has one fresh soup he will eat that is enough for 2 portions for him as he likes it thinned - tinned soups have been rejected!No more Heinz tomato soup. It's a whole new world
It has! I now have a cleaner - but having become used to living with dust I do struggle to find things for her to do! A home carer comes to shower him - but some of the carer stuff is a mixed blessing - they come any time between 9 and 10, supposedly it is 9.30am. So that has been most of the morning gone. Then he'll be too tired to go for a walk. The cleaner comes this afternoon - I've emptied the big vaccuum cleaner in preparation! I spilt the mouth wash stuff for thrush over the bed this morning!!
Patiently waiting for the social to stir their stumps and assess for attendance allowance - been waiting since June for even an acknowledgement. Last year they said we didn't need help and I should encourage him to drive to keep his independence! Hahahahahhahaha - even if he could drive somewhere safely, and he couldn't have, he couldn't get out of the car alone to go anywhere. The district nurse provided the 4 replies that should ensure something this time ... I hope. There are volunteers who would come - for an hour a week. What use is that? Barely time to get to the village and back and he is safe enough for that long. What I can't do is not be here at lunchtime and for Abendbrot since he has either soup or pasta at both. Even meals on wheels is chilled and must be reheated with a special induction hob. But the REALLY frustrating thing is it is entirely due to poor medical care last year because of Covid and appalling care this year - even the palliative miracle is unlikely to reverse things far. But having a mentally capable person back is such a relief. All thanks to a pint of blood, a low dose of steroids and a bit of physio though do need more of that really.
I didn't have a beef about the Covid restrictions - that was outwith their control. But this year has been appalling - especially this last episode and the A&E visit after a fall where I was blamed for not having a live in carer. Don't need one at present - if they do their job.
Problem is, medical ppl don’t see patient 24/7 so really have no idea of what is and isn’t achievable…..and that’s understandable. But a bit of common sense might help.
He was in the local hospital for 11 days - they did nothing and could SEE the problems 24/7. They assumed it was dementia I think. The only discussion with the haematologist who looks after him was in passing on the stairs. The palliative care nurse took 5 minutes to make the assessment that this could be improved.
Though it had been ruled out in the spring - I suppose it was, caused by lack of oxygen supply to the brain! He'd really been struggling with the computer and online banking took hours - said the other day he'd just been doing it and it all went so quickly!
It is a question of space - it is a living kitchen layout and the space where the fridge is is limited so getting one with a bigger freezer may not be possible. I shall look as the current fridge is 15 years old and another bit of plastic falls off with monotonous regularity.
Not sure there is room in the garage - the car needs it! We have a cellar - but it is rather full and I can't deal with it on my own! Plus it's a long way down!
I think most can associate with what you describe…..can I suggest you have a look at the FAQs, there are posts on all you are worried about - weight gain , moon face, low card diets, hair issues, sweating
The mood swings do not have a specific post, but you may find related posts help, type ‘mood swings’ or ‘depression’ into search facility - right hand side in top banner. They could be due to the medication and/or the illness if it isn’t properly controlled, which sounds as if yours isn’t . Plus at 6mg you are in the region where your adrenals need to start thinking about re-awakening, that could also be the problem. There is also a post on that.
The FAQs may give you some answers, and ways to help you, but please come back with further queries….
In my case I was willing to put up with the side effects instead of that excruciating pain. The steroids brought me back into the land of the living. I rather like having curly hair, it is the fact it feels like straw is the downside!
I think I have tried virtually every sort of shampoo and conditioner that exists. In the end I cut my hair very short and it actually looked quite funky.
Hi. They get me down also so I know just how you are feeling. I am only reducing mine half mg every five weeks now and things seem to be ok at the moment on the pain side. I am trying not to rush things and get back to a normal life. Hope yours improve soon.
I can relate to all of those side effects except the moon face. I never got that for some reason. I have the turkey neck instead and the dreadful damage to my skin which we have been talking about recently on here. As the lovely 81 year old birthday girl said, try and enjoy the good days.😉😉 Not easy I know, some days we just want to curl up in bed and cry. 😥😥
Hi Deneez99, guilty of all the above , i have and are still having most of the side affects you have. I am also on 6 mg from 40 , its taken me 18 months to get here. I have lost the moonface, but am still haunted by the hot flushes . I find these the worst to cope with as they can come on at any time anywhere ! As for the hair only last week my hairdresser told me its really common for women to get curly hair while on steroids ! Dont get me started about the weight ! Loads of people on here can help you with that. Hang on in there things can get better slowly your not on your own, best wishes Viv🌷
It is so difficult isn't it. I hate someone taking a photo at our great grandchildrens' birthdays with my moon face. Re hot flushes. I had a stroke, which I survived with just a few problems, but had to come off HRT and the flushes started. but preds have made them so much worse. I get pain in my buttocks sometimes, but as I have Scoliosis my osteo tells me if it is PMR or just the way I am walking, as awaiting a right knee replacement as well! It is never PMR. But I do worry as now doing the DSNS - 11 - 10mg. I find that 2 x Co-Codomol 8/500 am and bedtime helps. Paracetamol x 2 lunchtime and teatime. I also find that walking every other day for half-an-hour, only slowly is better than everyday. Do too much one day and you suffer the next with heavy legs and fatigue. I need to be as good as I can as I am a carer for my husband. Good luck and keep your pecker up!
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I'm waiting for meals on wheels but they are in the process of replacing all the reheating hobs they provide for everyone so are rather busy - hoping they will do Kalbs/Schweinebraten and that sort of thing which he likes but really isn't any point me trying to do them. My daughter ordered me a soupmaker and that looks promising. The supermarket has one fresh soup he will eat that is enough for 2 portions for him as he likes it thinned - tinned soups have been rejected!No more Heinz tomato soup. It's a whole new world 
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