Newly Diagnosed Jan 23: Hi all, After suffering for... - PMRGCAuk

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Newly Diagnosed Jan 23

Davies71 profile image
20 Replies

Hi all, After suffering for months with horrendous aches and pains and feeling like i was 100 yrs old , I was diagnoised in Jan with PMR at 52, after taking 15mg of pred my pains were gone in 2 days felt like a new women :) My inflamation markers were still high so have now been increased to 20mg and hoping to god wont have to go on higher pred as the side effects are not the best , the main one for me are head sweats when doing anything where I have to exert myself, like mucking out my horses and the weight gain. I was also diagnosed with Crohns disease in 2007 so again had the dreaded prednisolone then . I dont know if the PMR is connected to the crohns or not ? Anyone any advise on best way to deal with the sweats..... I am going away end of may abroad and might probably melt ........

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20 Replies
DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

Hi and welcome,

If you'd put "sweats" or similar in the title of your post it would have come up with related posts - there are plenty. so maybe try typing sweats, hot flushes or similar into search box - top right of screen and then filter results to this forum - and you get loads.

In the meanwhile - not necessarily covering sweating - an introductory/info post-

healthunlocked.com/pmrgcauk...

Davies71 profile image
Davies71 in reply toDorsetLady

Thankyou so much , i will have a look :)

PMRpro profile image
PMRproAmbassador

Hi and welcome!

I'll deal with the bit I can - cut your carbs, Drastically - especially processed carbs and added sugar and limit fruit. Weight gain is not inevitable but how much you need tocut carbs is variable. some have to get to almost keto to lose weight, I do but can maintain weight much more easily.

Sweat - loose clothes help but it isn't a problem I had, they were worse with untreated PMR.

Davies71 profile image
Davies71 in reply toPMRpro

Thankyou , i do think its the pred for me but all advice greatfully received

jaycee444 profile image
jaycee444

I have Ulcerative Colitis as well as PMR so think its probably a case of if you have 1 auto immune disease you may be prone to getting others.

Davies71 profile image
Davies71 in reply tojaycee444

Oh No , :( One is bad enough .

PMRfacebook profile image
PMRfacebook

I suffered with bad sweats on prednisone but it does improve as you reduce the dosage. Put a wet flannel/cloth in the fridge and use to cool down.

Davies71 profile image
Davies71 in reply toPMRfacebook

what a good idea 👍 thankyou

Pixix profile image
Pixix

Yes, I wrapped a tea towel round my shoulders, & told people I’d just been swimming if I needed an excuse…but it did pour out of my head…it was one of my symptoms before treatment, which continued…but went away as I was able to taper the steroids. I had to wear a band round head if gardening to stop the sweat pouring into my eyes! But it does stop, well, it did for me…sorry I can’t remember what dose! For me it was a no brainer…didn’t want the head sweats, but did want to continue gardening, renovating old cottage, hiking in forest we live in…etc etc!

Davies71 profile image
Davies71 in reply toPixix

nice to know it’s not just me 🙂 my fiancé has bought me a sweatband I look a Wally in it when I’m mucking my horses out but stops the sweat dripping down my face

Pixix profile image
Pixix in reply toDavies71

after I’d been of 17mg steroids for 2 months we went to southern florida (booked before diagnosis). I kept a tea towel in the car we rented, plus a huge roll of kitchen paper! I had a choice of headbands! Fortunately, we were quite near a beach, so hoped they’d assume it was that that made me ‘leak’! Because I wear contact lenses I found I coukdnt put up with the salt in my eyes, & one day a contact lens floated out on the ‘sea of water’!! So then I carried round spare lenses as well. I think it slowed down when I was on about 12mg, but still had night sweats until around 10mg. I have a flare up atm, & I start to sweat if I do anything energetic, but it doesn’t last so long, thank goodness! Crohns is far worse than PMR, I think (hubby has diverticular disease, they thought he had crohns), if you put up with that, I’m sure you’ll handle PMR!! We are horse mad (but not owners & muckers out)…we live in the New Forest & love every one of the thousands of ponies & donkeys loose in our area!! S x

Davies71 profile image
Davies71 in reply toPixix

aww the new forest sounds lovely , yes been through the mill with the crohns but currently in

Remission and now I get this 🙈 my horses keep me sane but I have to say before getting the steroids it was hard work felt like a old women and trying to keep a full time job and look after everything was certainly a challenge just getting out of

Bed was a hardship x

Pixix profile image
Pixix in reply toDavies71

you’re right, it’s no fun, but glad you beat the Crohns into submission! I’m sure you will do the same with this…& you know it requires time, & patience !! Hope you stop ‘leaking’ soon! S x

Davies71 profile image
Davies71 in reply toPixix

Thankyou x

AshPen9 profile image
AshPen9

Yes I had head sweats Davies71, but I'm down to 5mg and don't get them now. Only minor exertion like going for a bit of a stroll brought them on. I remember being very embarrassed when stopping for a chat with our plumber's dad. He didn't say anything, just reached inside his car, gave me a bundle of tissues and carried on talking! As you drop down, at some point you will just realise that they've gone.

Davies71 profile image
Davies71 in reply toAshPen9

aww Thankyou light at the end of the tunnel

Missus835 profile image
Missus835

Terrible sweats and hot flashes which mimic the menopausal kind (which I did not have). 20 mg. of Prednisone helped immensely with all the pain. I admire all your activities, but rest is just as important as medication.

Davies71 profile image
Davies71 in reply toMissus835

I’m just carrying on as usual same 20mg of pred and no pain although my bloods are still showing high inflammation,tbh I’ve not been told to rest I work full time have 3 horses chickens and a dog to look after so don’t get much rest 🙈

PMRpro profile image
PMRproAmbassador in reply toDavies71

You may have to rethink though if you are to reduce the pred dose - lifestyle adaptations are often also required to be able to reduce the dose. And long term high dose pred doesn;t do muscles and tendons much good, making them more likely to be injured.

Davies71 profile image
Davies71 in reply toPMRpro

I know when I was at my worst with my crohns and high steroids a couple of years later I broke my heel falling off some ladders smashed like a crunchie bar ! I I ended up have it’s fused 🙈

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