Lupus friendly light bulbs pls

[ijeasike]

Hi all

I have been having a flare since November, i am stuck with a chest infection my face has a permanent blush called butterfly rash. It becomes red hot. I saw my dr last week who informed me that because of my photosensitivity that the light bulb can also make my rash worse. He suggested i start using sun cream (bizarre right). But i dnt have much choice. Good thing i have a neutrogena spf 100 i got last summer and bought couple more last year preparing 4 next summer.

Now i am literally a vampire i repel any form of light. I have to cover my face and every visible part of me with suncream b4 the light is turned on.

So is there any lupus friendly light bulb i can get to change the energy savers i have in my house. I am exhausted. Thanks all . Take care and God bless

Regards

Ije xxxxx

[Mifford]

You have my sympathy - I have severe photosensitivity to all light so know how it feels.

If you can still get hold of some incandescent light bulbs then these are your best option. If that's not available then I've recently invested in the Hive system and their light bulbs which I'm told don't emit uv. It's expensive at the start as you have to buy the hub too but I can then use my phone to control it - I use the standard bulbs in warm white and it means I can set the level of the light to whatever suits me. My other half can have the living room light at 100% when he is there on his own and when I'm using the space we turn it down to about 60% and down to 20% with a side light in the evening. It's a faff with the phone sometimes as you leave the switch turned on all the time and use your phone as the control point to turn it on and off but other half got an Alexa echo dot for Christmas and we can now voice control the light which is better.

I do also have to use sunscreen and a light reflective cream (Dundee cream) all the time but the bulbs haven't sparked off my migraines using them this way yet which is good.

The other thing we do is have "moody" lighting where I use one or two side lights in the far corners of the room rather than an overhead light and that helps.

Have you spoken to your doctor about getting sunscreen on prescription as well? They should be able to prescribe you one of 3 approved factor 50+ sunscreens that would help. They are high quality blocks and might work better than the neutragena if that isn't working for you - I used that make when I was away before I knew all about the photosensitivity and it didn't work for me at all unfortunately.

Also I'd say if you are reacting that strongly you should push your doctor to refer you to either dermatology or the photosensitivity department at Guy's Hospital (the John Hopkins Institute) and they can test you to find out exactly which light range is causing the problem and help you from there. They can also then prescribe the best treatment or cream for you - they provide me with Dundee cream which my gp can't prescribe which is a godsend for me so you might find something like that works better for you. It's very thick but you don't need much on your face and it's tinted which helps - i put mine on every morning and view it as being my foundation

Good luck

[ijeasike in reply to Mifford]

Thank u i have asked my consultant to refer me to dermatologist for pigmentation of various parts of my body. But have not received any appointment regard that. I will go tou gp and ask for help. I will also check for the bulb.

Thanks alot.

[baba]

Useful information on this site

lupusuk.org.uk/eclipse/

[ijeasike in reply to baba]

Thanks for the link it is very helpful.

[Carmen62]

No light for our problems I was sent to a dermatologist specialist he gave lots of samples and dove was all he recommended for bathing

[ijeasike in reply to Carmen62]

I use simple (shower cream, wipe and tablet soap. My face is itchy, and when am under the light it burns. I intend to see my Gp and am awaiting an infusion appointment in hospital. Am on 20mg of steroids my consultant suggested taking it up but i refused am struggling with my weight. Wake in the morning with a moon face and a big fat belle (according to my son).

Thanks

[Paul_Howard Partner LUPUS UK]

Hi ijeasike ,

Please have a look at our blog article about light sensitivity for advice about artificial lighting - lupusuk.org.uk/coping-with-...

[ijeasike in reply to Paul_Howard]

Thank u

[Kathy1465]

I have been using elidel cream for a few months now. It works fast and helps with the redness. I use it once a day. If I don't, within a couple of days the redness and red bumps come back very fast. No one knows anything at work and my skin looks normal now.

Kathy

[ijeasike in reply to Kathy1465]

I am trying a bit of dermovate and suncream spf 100. I have my bulimumab infusion next week and another in 2weeks. I will be going into hospital on admission for a flolan infusion. I pray that with all this treatment plans things can calm down. Hoping my steroids will be reduced when all this treatment starts. I pray i sort things out at home b4 going into hospital. Sort the car out so my mum could use the car to take my son to school and do the daily task. It is a tough job being unwell. Good thing we have a good health service. I am thankful to the Lord that i can access medical facilities to cope with my health.

Regards

Ije

[Leewon]

Any build that does not emit uv light I think it's uvb rather than uva light that affects lupus. Hope this helps x

[Leewon]

I used to have Roc total sunblock prescribed from my GP for sunlight protection. Never had a problem with tash after this. It's the flare that's causing you to have the butterfly rash though and only treatment of your lupus will help with this. The cream will only protect you from the rays that can initiate a flare.

[ijeasike in reply to Leewon]

Thank u

[Leewon]

No worries