Hello everyone, ever since the rheumatologist have put me on some new steroids I have got worse and my rash is extremely bad, it burns really bad, I’m going to mention it to them they said if it doesn’t work I may have to have chemotherapy and I’m not seeing them again till the 22nd may, my mum rung the rheumatologist helpline but they are no earlier appointments, what can I put on my face to try cool it down its constant burning really bad and I’m in agony I will attach a photo below, and the steroid is I think prednisone or something like that, is anybody else on this and did it not work for you, and what did they put you on after? My ears have recent started burning really bad since I’ve been on these steroids aswell, you can see my ear on the photo, I’ve been really fatigue and my joints have been really bad again, It will only let me attach one photo x
Butterfly rash 🦋 : Hello everyone, ever since the... - LUPUS UK
Butterfly rash 🦋
Hi I can’t really help as I can’t seem to get to my own diagnosis but I did have one does of steroids via drip and my face burned and it made my heart race on to
Hope you feel better xx
Thankyou and yeah I have tatchycaria which is rapid heart rate, but Thankyou anyway xxx
Lacto calamine cream may help...and no nasty side effects that I know of! - Good luck
Okay Thankyou xxxx
I’m not sure if it works the same Leeshalou123, but when we had sunburn as kids when we went on hols, we always had aloe vera gel after sun, you can keep in the fridge and it feels wonderful!
Like I said, not tried and tested but perhaps it’s worth giving it a go? Buy online, in a chemist, or I believe you would be able to get it in big super markets, particularly with the summer coming up. I’m so sorry you seem to be suffering, you’re face does look ever so read and hot. Best of luck to you dear 💗🌟
Thank you, I will get some and see if it helps, I was sat with ice packs in my face lastnight but that didn’t seem to cool them down either xx
I have SCLE n I'm on long term prednisolone..it's so hard to know with meds because one of the side effects listed with so many things is 'a rash'!! If u can't get to speak to rheumy then I would go back to GP for advice
I have used aloe Vera gel to good effect on my burning bits but now I use Dermol lotion prescribed by dermatologist..it's cool n relieves any itching..it's used for eczema n dermatitis. Maybe some ibuprofen for the inflammation?
U don't say how much pred your on or how long you've been taking them..but if you've been on them for a while it's not recommended that u stop them suddenly!!
I feel for u..your cheek looks really inflamed...I'd also say take your earrings out as well for the time being because your ear looks a bit swollen xx
Thankyou so much, I’ve been on the steroids since the beginning of March, and I’ve been really poorly and worse since I’ve been on them and I’m not aloud ibroprofen or anything due to all my allergies they said I’m not aloud them and I’ve tried ibroprofen gel but that doesn’t work and oh yes I never thought about my ear rings, I will take them out and yes when my butterfly rash burns really bad, it spreads to my ears and they have been doing the same and it’s horrible, I’m on 2 pred on a morning I think I can’t remember😂 my mum sorts all my tablets out as I’m on like 30+ everyday, my doctor has took me off paracetamol as that wasn’t doing anything and has put me on co-coodamol but that doesn’t seem to be doing anything either, I’m just constantly fatigue, my rash has been very bad and my arthritis plays up 24/7 xx
I don’t know if this applies in your case but steroids are usually helpful for allergic conditions such as eczema, asthma, hives and specific allergies to foods, animals etc. However the exception is Rosacea which can be worsened or triggered by steroids/ Prednisolone.
Rosacea is a common add-on to Lupus etc and can often start with a rosy glow and burning sensation. Unless it’s pustular (like adult acne) - which it often isn’t - it can be hard to distinguish between Rosacea and discoid Lupus I believe. It may be worth asking your rheumatology nurse, consultant or definitely worth asking a dermatologist if you have one? I had some odd insect bite like spots on my forehead with Prednisolone one time and was told this was Rosacea.
Also I had a really nasty, painful bout of facial hives and tachycardia on Hydroxichloraquine and had to stop it eventually.
Steroids always give me tachycardia at higher doses - as do other meds eg Amitriptyline.
Heya Thankyou, yes I have asthma, eczema and other allergies, I’ve had tatchycaria for a while and I’m also on amitriptlyline 4 on a night for nerve pain and to help me sleep but ever since I’ve been put on steroids I’m not sleeping at all xx
Well it could actually be the Amitriptyline that’s causing the tachycardia or the combination with steroids perhaps? Unless you have Rosacea (which it looks a bit like to be honest) the steroids would normally help all the others although it definitely can cause tachycardia. But meds can contraindicate so I’d go to your doctor ASAP and go through the combination and ask about Rosacea which is very common with all these conditions.
Thankyou so much, when I went to my doctor last week she said she couldn’t do anything else for me she said she’s passed me on to the rheumatologist now so she said she can’t do anything else, she put me on antibiotics because I had a chest infection ear infection and throat infection and I told her the steroids have made me worse and showed her pictures of my feet and hands etc but she said I’m gonna have to wait till the 22nd may to see my rheumatologist xx
That seems a long wait. Could you phone rheumatology and explain to your rheumy’s secretary or a nurse perhaps as Prednisolone should be making you feel better not worse.
My mum rung the rheumatologist help line and they said they can’t do anything about it because they are no earlier appointments so I have to wait till the 22nd may, it’s a night mare I’ve got worse and it’s the tablets that have made me worse and they won’t see me xx
See my link below and go back to GP to discuss tapering off steroids perhaps? I had to phone GP and tell them my lips and tongue were starting to swell before they would intervene to take me off Hydroxichloraquine. Get your mum to ask GP or your rheum department about slow anaphylaxis - this might galvanise them as it’s potentially life threatening. You can’t wait for over a month if your face is hot and swollen - it could be dangerous.
Thankyou so much xxxx
Definitely go back to GP because they still have a duty of care..I've been prescribed steroids by dermy but it seems that when I taper them down my symptoms flare up again when I get to 10mgs which is 2 tablets but pred comes in different strengths so I'm still not sure what your dosage is..so when that happens I go to my GP n she contacts dermy for advice if she's not sure what to do..have to say my GP is an absolute star!! Part time tho unfortunately 🙄xx
Thankyou so much xx
My skin goes like this without steroids!
Steroids have been my saving grace since last January. I was taken off them in December 2018, and it felt like I’d had my plaster removed and everything come flooding back ten fold.
I’ve had increased heart rate and weight gain the only real bad side affect.
I would strongly suggest a visit to your gp surgery ASAP, failing that a trip to a&e.
As I was told before the skin reacts to warn you that something isn’t right, whether it be eczema or psoriasis it shows on the skin as our little warning signal
X
Thankyou so much, what do I say to my gp because when I spoke to her before she said she couldn’t do anything because she’s passed me over to the rheumatologist xx
If you can, I think it would be best to go into your gp surgery so they can see your face. X
My mum has rung and could only get me an appointment for next Tuesday, she’s gonna ring the rheumatologist help line again to see what they say xx
If you can get there , do try. I’m sure they would see you as an emergency
X
My mums gonna ring tomorrow to see what they say, Thankyou xx
Rash/swollen lips 
Help with dx
Steroids and Increased Heart Rate
Butterfly Rash treatment
New skin rash - purpura? 
