Intolerance of heat, MMF and Steroids

[tiredmum]

Hi guys,

I posted on here a few days ago about me not being able to tolerate the heat and some of you kindly come back and said that you suffered from the same thing.

Well, my rheumy nurse has come back onto me and she is adamant that she has never heard of such a thing with people taking MMF and is concerned that it is the steroids causing the problems !!!!!!

I stopped the MMF for a few days and my upset stomach is calming down nicely (phew), but the heat "thing" is just as bad. She has advised me in no uncertain terms to restart the MMF otherwise I am at risk of a big flare and she will ring me back next week after speaking to my consultant.

I just wondered how many of you suffer from heat intolerance whilst on steroids.

I obviously need to look at the bigger picture.

thanks in advance

[lillyanne]

Hi Tiredmum. I don't take steroids but I have terrible heat intolerance. Its embarrassing because I sweat profusely and I'm very conscious of it. Ive asked my rheumy, my dermatologist and the neurologist about it but none of them have ever suggested any kind of treatment for it and just sort of shrugged it off. Sorry I couldn't be of more help but I don't think the sweating is from steroids, but is more a symptom of SLE . What do others think? xxxxxxxxxxx

[tiredmum in reply to lillyanne]

Hi Lillyanne, I hardly sweat at all, perhaps if i did it might cool me down !!!! It's more that I get really hot, weak, nauseous, shaky and start retching. Once I get myself cool again, I am fine, just very tired.

Thanks for your thoughts, roll on the autumn, that's all I can say.

Keep well

[gizzard in reply to lillyanne]

I'll have to agree to that. No matter what I take or don't take I profusely sweat. Been going on for years. Very embarrassing and uncomfortable. Talked to many Drs. about it, no answers. I'm guessing it's the disease.

Be blessed

Lynn

[Manolo33]

Hi, I have been on steroids for over a year and didn't get the hot flushes till earlier on this year - before I was diagnosed with SLE. I get both the hot flushes - when I feel dizzy, weak and drunk and the sweating where my head, face and back are literally soaked in a matter of minutes but I am not hot, feel cool to the touch. I have been on azathioprine since the end of June.

Take care and stay cool - I use a cheaper priced version of magi-cool.

[tiredmum in reply to Manolo33]

Hi Manolo33,

I've seen the advert for magi-cool, but have never seen it in the shops. I always put an icepack in my bag and put it on my wrists whilst out, and I've bought some of those cooling towels off of the lupus site, they are ok, but not as good as I had hoped. Like you though even though I feel so hot, to touch I am cool.

[lillyanne]

Hi Manolo. I feel cool to the touch too. I also feel dizzy and it seems that when I'm having a 'bad' day, my flushes are even more extreme. I feel exhausted and unable to move some days. Horrible! Ive only had these flushes for about a year and I was diagnosed with sle about 9 months ago. All my doctors note down about these 'flushes' but that's as far as it goes. I'm going to try that magi cool, anything that helps love to all xxxxxxxxx

[Manolo33]

It's a very odd feeling being sweaty and cool at the same time - there are cheaper alternatives to magi cool - which I have found to do the same job - bought them from those smaller shops like discount uk and body care. Failing that my wrists go under cold running water for as long as I can stand. Best wishes to all. Xx

[joshuaroberts]

I've had terrible intolerance to heat, aswell as pretty bad bouts of the sweats since being on pred, it's destroyed a lot of my skin aswell, scaring everywhere

[caninecrazy]

hi, I do suffer from summer sweats but this year has been my worst I can go from normal temp to boiling within seconds! yet im cool to touch aswell? the sweat runs in rivers down from my forehead and runs down my chest and back. its so embarissing, I try to avoid sunshine as much as I can but cant always be avoided. im having a bad flare that currently lasting since beginning of july, I find 21* comfortable but any higher and my body melts even at night . im finding my job very hard to do whislt like this as im left with a pounding headache and neasea.