Still pain free but ......

[Teanna]

Hi all, I know we are all feeling low looking at 4 walls 24 hrs a day.

I’m enjoying my hobbies but not the Weather....

I’m using all the creams, sun factor, and covered up with a UV canopy that costs a lot but I have literally come up with blisters all over the face. I’ve done everything that I was told to do but it’s worse now that’s it’s every been. Obviously I can’t see my Dermatologist yet (I’m high risk) can’t see them as the moment. I know that I’ve not long being diagnosed with Lupus. They have already changed the creams 3/4 times, but this time I it’s never been as bad.

Any ideas???

[maggielee]

Hi Teanna,

Sorry to hear that your still reacting badly to UV light. When I was flaring my rash continued with or without light.

What I suggest is take pictures of your rash/es to document what is happening with your skin & any other symptoms you maybe experiencing. It really helped me when speaking to doctors & helped them to see my rashes at different times. I would then contact your dermatologist's secretary & email him/her with the photos & ask for a phone consultation.

It maybe no sun for abit covered or not (know how that is)...may need additional or more meds to get under control. I hope you get some answers soon, mine got much worse before I was diagnosed & then was given a biopsy...

Wishing you well. ml

[Teanna in reply to maggielee]

Hi, I know it’s a bit late but I did exactly what you said and got a GP call me back and suggested a cream, and it works. So thank you very much for yr help. I know my lighting has to be looked at and the front of my apartment has to have a uv covering put on the patio doors & windows, but I did find (for my back garden) a UV awning that goes across my back patio doors and small window, and it’s great, I can still do some of my hobbies. I’m in 2 minds whether or not to put in the front garden as I feel it will darken my Lounge, but the awnings are not cheap. Thank you again, keep safe, take care.

Teanna

[maggielee in reply to Teanna]

So pleased to hear that you have had some help & you are finding long term solutions...

It a big deal in our lives to have uv problems. Folks do not understand so I just say I am allergic & that seems to sink in....

It nice to sit in the shade & enjoy the outdoors even for a little bit...and I haven't shaded the windows for uv as it to important to me to have natural light & as it doesn't cause me problems, let it flow in....

Really helped me especially in cars driving to have sun protective clothes & to pop out to the garden too...

Thanks for sharing, always good to hear good news....ml

[Teanna in reply to maggielee]

Hi, thank you for yr help. It’s the case of having to put the UV at my windows/doors, but it would stop the natural light, and my place is pretty dark anyway. Even when I was in hospital, they had to keep the curtains drawn as I would just burn.

Take care,

Teanna

Hope everyone is staying safe, I know it can be a very lonely time, I have a carer that comes in everyday, so it’s a little easier, plus with 2 gardens. How lucky I am....,

[maggielee]

Ps light is reflective even shade has uv..ml

[Teanna in reply to maggielee]

Hi, even when it’s for Lupus sufferers. It completely covers me, no actual light can penetrate. What I did not know (when I looked at my report), I’m sensitive to UVA & UVB, I’ve just found this out too.

So I will take a photo and send it to my GP & the consultant at the hospital.

Thank you

[maggielee in reply to Teanna]

I learned more about light in recent years & it helped to understand it for my work as well. I use a uv light meter at work & walked around inside & out to see the variations & released the was uv inside that I didn't expect..

Wishing you well.ml

[heatherevans28]

It might not be the light at all. If you are still getting a severe inflammatory response then it might be that you're medications have just not yet started to work. Symptoms can be worse on some days than others, and I remember having a facial rash for months when I was first diagnosed. Stress can also make flares worse, which would be understandable in the current climate. What are you taking for your lupus?

In terms of light, UV canopies can be very specific about what they protect you from. This means that you need to make sure that it is broad spectrum for UVA, UVB and sometimes blue light. They also normally only provide a certain rating of protection (the same as protective clothing).

You must also make sure that you are protected in other ways for what does filter through. You say you are using suncream but please make sure that it is SPF 50, 5 stars (or 4 PA plusses). You also need to make sure that you are applying one layer, letting it settle for a few seconds and then applying another. It needs reapplied if you are sweating or doing anything that could rub or remove it. Another common mistake is to not apply it to the backs of your hands and any other exposed parts of your body. This is especially important with all the hand washing we have been doing but hands are an important part to cover as they are constantly exposed. Everytime you wash your hands you must reapply to the backs of them.

Diagnosis is a strange time for people as they adjust to their condition. You will learn with time what works for you and hopefully what eases your symptoms. Although you cannot see your consultant, if you are feeling worse then please call them. They are there to help and will know your specific case better than we ever will.

Hope this helps and all the best xx

[Teanna]

Hi, my GP is excellent, I had taken a photo of my face, one side is worse than the other. She asked me to email it to her and she will get straight bk to me when received. She called 10mins later, she had sent the prescription to my pharmacy, and my carer picked it up, (all done in 30mins). And it actually worked. I have noticed that my lamp is on my bad side, bt I’ve got a light bulb which helps, but I also blister on my legs, and I always have them covered. The sun screen I have was prescribed by the hospital, but it does not seem to be strong enough, but I’m still learning. I probably get another awning because it actually covers all of me, I don’t fancy the UV film at the windows, it would be to dark. So I’m crossing my fingers that I’ll be able to afford another one.

Thank you for your knowledge

Teanna

[Teanna]

Hi, the one I have is for people with UVA & UVB. It’s attached to the wall outside, it’s 3m across and it reaches the back wall, and it is made to stop the UV penetrating through the awning.

And it DOES work, they are fairly new out but a bit on the expensive side but well worth it. Luckily I had someone to put it up, and if I had the money now, I would buy the one for my front garden. It cost £280.

Thank u for replying

Teanna