Hot Flushes and Random Sweating is it PMR or Prednisolone causing this ?

[RoomsonFire]

Hello all , I’m new to the Group , My GP diagnosed PMR in June 21 - I ‘m taking Prednisolone 10 g daily ,

Plus Paracetamol for Headache

Feeling Hot and Flu like is making me uncomfortable is it PMR or the Steroids responsible ?

[PMRpro Ambassador]

Er, yes And Hi and welcome!

Not being facetious - it could be either or even both. Sweats are more common with GCA but they do also happen with PMR. For me they improve with the pred and return if I am verging on a flare. But some people find that pred causes them to have sweats and they improve as the dose reduces. Like everything else to do with PMR - everyone is different!

[RoomsonFire in reply to PMRpro]

Thanks for your reply 🙏 I’m seeing a Rheumatology Consultant on Monday , So hopefully he will have a Treatment plan to suggest , I felt better on 15 mg of Prednisolone - but definitely look Puffy and Weight up 10 lbs too - so keen to taper if possible - but definitely don’t want to return to dreadful Pain and Immobility before starting Prednisolone- I was almost Bed bound !

[PMRpro Ambassador in reply to RoomsonFire]

Cut your carbs drastically, especially processed carbs and added sugar, and limit fruit and root veg. Cutting the processed carbs reduces both carbs and salt which contribute to the fluid retention. Pred alters how your body processes carbs and cutting them really does help reduce weight gain and also the craving for carbs that drives you to eat and eat which contribites to weight gain. Just a healthy diet doesn't cut it with pred- carbs are the critical item.

[RoomsonFire in reply to PMRpro]

👏👏 Thanks , my GP suggested Green Smoothies as the way to go , as I’m Vegetarian 40 years - So carbs like Bread , Pasta , Rice are my Main menu .. Guess I’ll have to adjust .. almost like I would for Diabetes ? It’s helpful to know the Condition is being experienced out there - I don’t know of anyone in Person with it - But my Sister has had RA over 20 years , so I’ve some experience of how painful Inflammation can be , now I know personally - from having PMR for 3 months without Meds !

[SnazzyD in reply to RoomsonFire]

I started on 60mg Pred and cut out all pasta, rice, bread, potato, oats, flours and sugars. I was already gluten and nearly dairy free. I did not put on weight and my blood sugars stayed stable. Healthy eating in the normal sense just doesn’t cut it with Pred because it forces raised blood sugars. The frequent spikes in insulin to deal with increased blood sugar causes deposition of fat. When you add more carb in your diet just fans the flames. Low salt reduces fluid retention and puffiness. My face still took on the moon face appearance but that’s just due to the steroid causing redistribution of whatever fat you do have to deposit around the face, neck and middle of tummy. That reduces with dose as do all these other effects.

[RoomsonFire in reply to SnazzyD]

I’m going to find following a low Carb diet quite punitive I think - I’ve struggled to keep my weight down all my Life ! But I guess I may need to for more than Vanity now , 🙏 Thank you

[SnazzyD in reply to RoomsonFire]

I found it very punitive but becoming diabetic was a no no for me and putting on weight has other risks too. I felt my life and health had gone out of my control and this was one thing I could control to help myself. What I would say is that after a few weeks my taste buds readjusted and I could sense flavours in bland salad foods and things tasted sweet when before they didn’t. My pud was usually berries with a good helping of thick coconut milk yoghurt and a few squares of 85% chocolate. I added in a couple of small glasses of white wine. Now I’m off Pred it doesn’t occur to me to pile carbs on my plate, though I do make sure I’m not carb free if my body needs it.

[Viv54 in reply to RoomsonFire]

SNAP !

[PMRpro Ambassador in reply to RoomsonFire]

I would have thought green smoothies would less ideal - you have removed all the fibre and the carbohydrate in the fruit and veg is just released directly into the blood stream. They don't appeal to me - I like the crunch of whole fruit and veg.

[Sharitone in reply to RoomsonFire]

As a fellow vegetarian, I can sympathise. But the good news is that you do not have to stint on the tastier things like cheese, eggs nuts ( though cashews and peanuts are quite high in carbs, being as they are not really nuts), as you would if you were following a calorie-controlled diet.

[RoomsonFire in reply to Sharitone]

Hi Sharitone 🌷🌷 Unfortunately I’ve put on nearly a Stone in 3 months of taking Prednisolone 15 mg - but they have been almost a Miracle pain relief , when nothing over the Counter helped 🙏 So I’m 12.7 about 2 stone too heavy - I’m not keen on Eggs and I’m on Statins , so Dairy is on limits - high Cholesterol- In conclusion I need to eat like a small Bird 😂 I’m 61 so guess I’ve had a good run so far - My Sister has suffered RA for over 25 years ! Best of Blessings to you ❤️

[Sharitone in reply to RoomsonFire]

Quorn ham is not too bad for carbs, about 5/100g, and 2.7g fat, and I 've just discovered it works well as a kind of wrap for salady bits. You heard it here first!

[RoomsonFire in reply to Sharitone]

Thanks Shari 👏👏 I have tried it , in Granary Bread with Hummus 😂 We’ll I guess a Nice Little Gem leaf will work too x

[Sharitone in reply to RoomsonFire]

I think I didn't explain it very well. I meant that you can use the 'ham' instead of the bread, because it doesn't fall apart when you wrap it round the salad. and it is mainly protein, so more filling than lettuce leaves

[RoomsonFire in reply to Sharitone]

Oh yes I can visualise this now the Ham slice acting as a Tortilla 👏👏 I use raw Celery like this , with Cottage cheese inside the channel 💕 I’ve felt quite Trembly with less Carbs today - so making a big pot of Veggie Soup for Supper 🥰 take care and thanks ,

[Sharitone in reply to RoomsonFire]

Good idea. Bon appétit!

[PMRpro Ambassador in reply to RoomsonFire]

It's a good idea not to cut down drastically all at once. One lady cut by a quarter the first couple of weeks, another quarter the following two weeks and so on until she got where she wanted to be.

[Heron82 in reply to RoomsonFire]

Hi you ought to look at the latest research on diet that has been published in the last few years and ignore the old dietary guidance. Cholesterol in food such as dairy and eggs does not contribute to blood cholesterol levels. There is so much misinformation out there on diet. Zoe have been doing some good webinars on diet recently as well.

[Viv54 in reply to RoomsonFire]

Hi this is so common on pred ,my sweats started from almost day one ! If you look through you will see so many on here suffering . I feel like i have a heater strapped to my back ! cant control my temp, plus at the start of pred my sweating was so bad i couldnt keep my shoes on my feet as the amount of sweat made them slip of my feet. Sorry to be so graphic !Plus they are so random when they come, the only positive to helpis they do get better not as intense the lower the dose ,and yes i piled on loads of weight.

[Heron82 in reply to PMRpro]

I started taking 13.5 mg this week and the hot sweats have returned of an evening and in the night. My legs are aching and stiff and my walking is laboured again. I do hope it isn't a flare. My consultant would like me to reduce by 1 mg every 2 weeks after starting on hydroxychloroquin and methotrexate 20mg sc several weeks ago. My teeth ache as does my ear, due to my jaw muscle spasming. I've been told to persevere as he is sceptical about the GCA/PMR diagnosis due to atypical symptoms (legs and hips only, and not textbook jaw claudication), and wants to see what underlying symptoms are unmasked as I dose reduce. On the past few occasions when I taper to ca. 13mg the symptoms reoccur, and my GP has advised that I stay on 14 mg for 4 months. How is one supposed to deal with this conflicting advice?

Happy Sunday everyone. 🤗

[PMRpro Ambassador in reply to Heron82]

I do wish they would learn that not having jaw claudication does NOT mean it isn't GCA! The list of symptoms they are so fixated on was originally not developed for diagnosis, they were for use in research as inclusion criteria and then got adopted. Having jaw claudication is highly predictive of GCA - but NOT having it doesn't mean it isn't, just like a negtive TAB doesn't mean it isn't GCA, just they didn't find the giant cells. Not the same thing at all.

ncbi.nlm.nih.gov/pmc/articl...

says

"Jaw claudication consists in the appearance of pain and tiredness of facial musculature secondary to chewing which goes down with repose. It is due to affectation of the internal maxillary artery and facial artery as well as its branches. This affectation is the most common characteristic of GCA, although it is only present in less than half of the cases based on different studies "

pubmed.ncbi.nlm.nih.gov/852...

says

"... the most frequent symptoms being headache (87%), abnormalities in the temporal arteries (75%), general malaise (60%), rheumatic polymyalgia (49%) and mandibular claudication (40% ..."

So actually - textbook it may be - but fewer than half of patients may have it.

Many people only have hip and lower symptoms (it is either/or and both).

How do you deal with it? I don't know unless you can see another good rheumy privately. Or have a sensible discussion with the current one using those examples...

[RoadTrip in reply to Heron82]

I was diagnosed with GCA just over a year ago. I had PMR symptoms first in legs and hips only. I then had, for a few days, what my private Rheumatologist termed “quite significant jaw claudication”. This was not typical as PMRpro describes but severe teeth, jaw and earache especially in the early hours of the morning and not being able to open mouth fully to eat without pain. This was then followed a few days later by extreme headaches.

Jaw and teeth pain are mentioned quite regularly on the site and is often caused by teeth grinding and/ or muscle problems among other things. My pain was extreme, but it is always something I would advise monitoring and it never hurts to do do an econsult or call 111 if it gets really bad (if you are in the UK).

Best wishes and I hope you sort out a way forward shortly.

[jinasc]

Keep a cucumber wrapped in foil in the fridge when feeling like sort of hungry, cut 1" snd eat it. Loads of minerals in cucumbers.

[Constance13 in reply to jinasc]

I'm amazed! I thought they had no goodness at all in them - just plain water.

[jinasc in reply to Constance13]

Constance put Uses of Cucumbers in your search engine -you will be amazed.

They are the best thing for cleaning windows and mirrors.

It is said if you could carry enough cucumbers with you, you could cross the Sahara with no problems.

[Constance13 in reply to jinasc]

😂😂 Had to laugh - second paragraph! Also "Sahara" - as I said - "water".

xxx

[PMRpro Ambassador in reply to Constance13]

Everything has something ...

[Telian in reply to jinasc]

It does work in curbing hunger.

[PMRpro Ambassador in reply to Telian]

It works best for me as a big chunk - finely sliced doesn't do it so it must be the crunch factor!!!

[Constance13 in reply to PMRpro]

It would probably be like "chewing" water!🤪

[PMRpro Ambassador in reply to Constance13]

I don't think so - I like a good plate of cucumber chunks with a drink. Better than crisps ...

[Constance13 in reply to PMRpro]

As you have probably guessed I don't like cucumber. I like it's sister - Zucchini though - fried with herbs and butter. Also - big brother - marrow - stuffed with tartar and baked in the oven.

[Telian in reply to PMRpro]

Me too

[Constance13 in reply to Telian]

Give me lentil crisps any day.😂

[Telian in reply to Constance13]

I do like them.

[Heron82 in reply to jinasc]

For me cucumber is the bringer of wind. Enough said. Hx

[PMRpro Ambassador in reply to Heron82]

Do you peel them? It is said that eating the skin as well reduces the breeze ... It certainly has a lot of nutrients in it!

[Heron82 in reply to PMRpro]

Yes I peel of the skin, I'm jet propelled otherwise.....

[USAGCA]

I noticed that the NIGHT SWEATS disappeared (and never returned ) once I took prednisone. However, the regular daily hot sweats have pressed on. It’s annoying. No victim has the same set of symptoms.

[Viv54]

Hi out of all the posts on here this is the one i always reply. I have had two bouts of PMR , and both times one of my worst side affects are heat and sweating !! I feel like i have a heater strapped to my back. I can not control or predict when the temp/ sweats will come its random. On my first round of Pred it was much worse as i did not know it could happen, so one day i was just walking down a street when it happened ! It came from my feet up my body as the sweat got to my head my shoes started to slip off my feet as the sweat flowed ! Sorry to be so graphic but as i said found this very hard to cope with at that time. when my second bout of PMR came back i was ready for it ! and it did come back, but this time i coped slightly better as knew more about it. Im still having them but not as bad.ATM im on 10mgs but this is only for a short time , normally i have got down to 5ish. They are not as bad the lower you go and the gap gets longer in between ! I wear the lightest of clothes never had the chance yet to wear my lovely new winter coat , but i dont care just want to be cool ! so wear light cloths dont sit in warm rooms, have a hand fan, use cologne if you can, do your best to stave it off ! It will get better the lower you go ! Good luck, chin up your not on your own. Best wishes Viv🌷

[2013mayo]

Hi, When I was first diagnosed with GCA I used to to get terrible night sweats, well even before diagnosed, this went on for some considerable time, I’ve been on pred now for 2 years and only very occasionally now I get the nights sweat, nothing like they used to be, I used to wake up soaking wet, not menopause.

You will eventually stop getting them, well hopefully .

Take care

Xx

Ps, just a thought, if it’s really bad maybe have a word with your doctor, maybe I should of done this but I felt I had enough going on, just didn’t want anymore investigations at the time .