Red Cheeks

[solas]

My 12 year old daughter was diagnosed with SLE Lupus last July. She is on a variety of medication including myclophenolate and prednisolone (down to 5mg) and her health has greatly improved to the extent that she has been able to lead a pretty normal life,most of the time. Recently,however, she has been suffering from flaming red cheeks and sensitivity to temperature-almost like a hot flush! When this happens she can feel quite unwell-nauseous, headache and sometimes a sore throat. Her last blood test results were good and I wouldn't call the redness on her cheeks a rash, but this is really distressing her. Wondered if anyone else has had similar symptoms and if they have any tips for coping with these symptoms.

[Danielle2419]

Hi solas im pretty near the same as your daugther diagnosed last year july on prednisolone (down to 5mg) and my health is normal it seems i do get the redness on my cheeks to me its the butterfly rash what we all can relate to i get senistive to high temputures also i do get a headache to but thats it. I wouldnt call it a rash more like i went mad with the blusher. My only advice is if shes on hydroxycholorquine this is meant to help with skin rashes and with myself i wear makeup so that covers it up. Im sorry if i cant help fully but maybe if its that bad for your daugther take this up to your doctor and see what can be down for her.

[solas in reply to Danielle2419]

Hi Metoyou and thank you so much for replying. It is an encouragement to know that others have similar experiences. Yes, she is on Hydroxycholorquine and I intend to investigate this more and will take your advice and will take this up again with her rheumatologist asap.

Hope all goes well with you too.

[EllieB4]

Hiya Solas,

First of all I am so sorry to hear of such a young girl being diagnosed with Lupus ! I know how it affects me & I think you must have a tough wee cookie to be able to cope with so much at such a young age.

I am on all three drugs, pred, myco & hydroxy so your post was of great interest to me ... I toosuffer with temperature fluctuations (just like hot flushes - so bad I actually thought it was early menopause - i'm 31 !!) . But I also get the red cheeks, more so when I'm tired or stresses. As well as sore throats and headaches. I find my symptoms are much worse around the time of the month so I would be mindful of your daughter going through puberty as quite often this is a time when flares can occur.

In respect of things that may help ... see if you can notice a pattern. Maybe certain times when its worse or more obvious & what your daughter has been doing. Rest, darkened rooms & quiet helps me - kinda how you would treat a migraine. You prob dont want your daughter to wear make up so young... ? But it may help her confdence as school etc can be tough enough. I dont wear any myself and just try to ignore it but it does get me down at times - I try to be overly confident to compensate!

I really hope this is helpful ... my 6 year old son is with me & has just asked what i'm doing ... he knows all about my Lupus and its unpleasant side effects ... he said "please get better soon & take all your medicines because they really help my mummy" ! Kids eh, such wonderful creations!

Good luck, from another Mum ( Ellie) xXx

[solas in reply to EllieB4]

Aw that was touching. I shared the message from your son with my daughter and she was really pleased that he was thinking of her. Love to him.xx

Yes, it is hard for her but she has coped remarkably well on the whole. I found your comment about puberty helpful and wonder if there is a possible link here. Also, the suggestion to note a pattern so we will keep a wee diary over the next week to see if anything emerges from that. We are on school holidays at the moment so we will also see if the extra rest makes a difference too.

It is also interesting that you are on all 3 drugs that she is on. Could that be significant?

Thank you so much for replying. This is the first time I have posted on here and found it a real help and encouragement.

All the best to you and your family xx

[SarahHeney]

Hi there. I get that reaction to sunlight and UV flourescent light as do many of us here. Mention to your GP but worth trying a facial factor 50 sunblock everyday. The sunlight becomes harsher and brighter at this time of year. Also if her school has flotrescent lights. Check your light bulbs are all LEDs as energy saving bulbs have UV in them. Daily sunblock and an awareness of keeping out of direct sunlight should help but your Gp may refer you to dermatologist for light testing. Hope this helps x

[solas in reply to SarahHeney]

Hi there and thank you for replying. She does use a factor 50 sunblock-most of the time anyway but we need to tighten up on this as the year goes on. We will look into the light bulbs as well.

Think a visit to the GP will be needed soon.

Thanks.

[Hidden]

Hello Solas - how sad to hear of someone so young being diagnosed with lupus. It's a rotten disease. From my experience, I think this must primarily the mycophenolate. My flushing and sweatinghas got a bit better since I stopped the steroids (3 weeks ago!!) but my skin is in a bad way. I seem to be sensitive to out-of-doors - not just to sunlight: the UV index can read 0 and I still get a blotchy red scaly itchy rash. My lips get burnt and blistered if I don't keep them covered at all times.

I have a matte, non-greasy, factor 100, which seems to help - but I still need to be careful.

I think your daughter needs to see the GP (if not also her rheumatologist) just in case - the sore throat may be a warning signal that things are not quite right, whether it is an incipient flare, a low white cell count, or somethings else.

Take care,

[solas in reply to Hidden]

Hi MaggieS and thank you for replying. Yes, I think you are right and a visit to the GP will be needed in the next few days and we will get in touch with the rheumatologist too. Thankfully it is school holidays so I think the extra rest will help somewhat too.

The steroids are being reduced very gradually so it may help when she is off them completely...

Sorry you are having such a rough time too-not easy coping with lupus.

Take care too x

[Melinda]

So sorry your daughters been diagnosed with Lupus Solas. The malar rash can sometimes be a rash or just red cheeks.

I've had Lupus for years, but it was only a few years ago that my cheeks turned red during a bad flare up and have stayed that way ever since. The redness varies a lot. Foundation cream does help to conceal it, but i would imagine there are much better concealers you can buy.

[solas in reply to Melinda]

Thank you for replying and sorry you have had a rough time. We will look into the makeup aspect especially as she gets older.

All the best to you x

[teddiebear in reply to Melinda]

hi i used brio oi on my face my have got but when i get a cold they come back

[lupie46 in reply to Melinda]

You can get medical concealer from your GP or dermatologist.

[chrisj]

Red cheeks here as well. I'm 66 and have them regularly with uncomfortable sweats that make me feel off colour....I have a small cool air fan clipped to my table and use that when its a problem, or a cold flannel...that helps too. Throat probs that come and go regularly....I do feel for her she's so young, sending her a big hug xxx

[solas in reply to chrisj]

Aw thank you. Yes, it is hard for her but she is a wee trooper and has coped very well with everything but this red cheek business is driving her daft!

I have shared the posts on here with her and it is an encouragement to her that she is not the only one with these symptoms.

A small fan sounds like a good idea.

All the best to you x

[roobarb]

Hi solas

As SarahHeney says, many lupus sufferers are very sensitive to light. Computers too, can trigger lupus because of the UV from the screens. So it might be worth investing in a screen cover for her. There is lots of info on the Eclipse website accessible through the lupus uk site.

I agree with Maggie, these symptoms could also be signs of a flare. Have you got a rheumatology nurse advice line you can ring after the bank holiday?

[solas in reply to roobarb]

Hi roobarb,

Will look into Eclipse-in fact will look into anything that I think will help her!

Tried phoning our rheumatology nurse yesterday with the slim hope that she might be around but it being Easter weekend-no joy. Will try again next week.

Thank you for replying. I found everyone's comments and suggestions very helpful and encouraging. Will blog again!

[roobarb in reply to solas]

There is such a lot to learn about lupus, but you are in the right place to get some helpful advice. I hope your daughter feels better soon.

Very best wishes to you both. X

[teddiebear]

hi have had red cheeks for yrs but i used brio oil its about £8 my red checks have gone they come back when ive got a cold

[solas in reply to teddiebear]

Thank you for replying. Will look into this too.What do you think causes your red cheeks?

[teddiebear in reply to solas]

i dont know but the docters said it was lupus

[Zoezoe752]

Hi this is the first post I have replied to I'm really new to this I am 21 and was diagnosed with lupus at the age of 7. I get red cheeks when I have a big flare coming and feel really unwell with the rosey cheeks just like u have said I have had bouts of remission and bad flares but I try and lead a normal life I never had anyone to talk to about my lupus and after reading blogs on this site I don't feel alone. If ur daughter wants to ask me anything at all il b happy to answer anything I have had most treatments and a lot of symptoms and I now work full time during serious flares but I understand its hard growin up different from ur peers and unable to do the things everyone else can so anything he wants to ask il understand

[solas in reply to Zoezoe752]

7 is really young to be diagnosed with lupus and well done for weathering all these symptoms over all these years. It is so helpful to share with others and an encouragement to know that others go through the same experiences. My daughter would like to know how you coped with the red cheeks at school?Did anything help?

Thank you for sharing.

[skj619]

hi solas,

i was diagnosed myself when i was about 14 and im 21 now, so i kind of know how it feels to be ill from such a young age. i know that its difficult seeing someone you love go through this, but all u can do for her is just look after her like youre doing,=. i remember that before i understood it properly, just knowing that i had my mum there although she didnt understand it herself,was just what helped me get over these flare ups. i used to find and still do, that when i get rash on my cheeks or anywhere on my body, cold compresses help reduce the soreness abit.

same as zoezoe725 if either of you want to talk to anyone, im always here.

hope she feels better soon x

[solas in reply to skj619]

It has been touching to hear from so many others who have gone through similar experiences and still are. Did you always think of the bright red cheeks as signalling a flare up?

Thank you for sharing and hope you keep well too x

[skj619 in reply to solas]

personally, it wasnt always the sign of a flare up, however, when i did encounter one, it was often one of the first things that would happen. i find that the rash shows the start of a flare up but this isnt always how mine start, sometimes its the achey joints etc.

x