LUpus Patients Understanding and Support
2,578 members560 posts

Summer time

As a lot of people look forward to summer.... I don't...x Sunblock becomes my best friend.

I'm now taking anti rejection drugs,

Mycophenolate mofetil 2000mg per day....so along with the underlying sun allergy, these drugs can make you even more sun sensitive !

So..... I always used Books sensitive 50spf.... But was wondering if there is better out there.... What does everyone else use..... ?????

Thankyou... Xxx

4 Replies
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Welcome to LUpus Patients Understanding & Support (LUPUS) at HealthUnlocked.

We also have another website called the LuPUS Message Board where you can also post questions and talk to other people. Registration is FREE and we offer free information and free online psychological support. We specialise in psychological support with our own counsellor/psychotherapist available.

By becoming a Member, you will have access to the private forums and because they are private, only Members have access and even bots and search engines are forbidden.

When you register, please use the following format for entering your date of birth: nn-nn-nnnn where n=number. Please use the "-" separator and not "/".

Finally, please go to: lupus-support.org/LuPUSMB and Sign Up.

I look forward to talking with you more!

Sometimes we need to talk to people who understand and who are not family or friends.

With good wishes!

Ros

Reply

I am very photosensitive and have an allergy to most sunscreens. I have found UPF/SPF clothing to be my lifesaver. I live in Florida, USA. Without this clothing, I would not be able to go outdoors for any amount of time. There are a couple really good companies online if you search for UPF or SPF clothing. I am not sure if we are allowed to recommend companies by name. I also never leave home without my SPF umbrella. Yes, some of the items are expensive, but well worth it since sunscreen is not usually an option for me. I hope this information helps.

Reply

The following may be helpful:

eclipse.lupusuk.org.uk/prac...

Medical Suppliers:

McKinnon Medical Limited

Centrepoint, Chapel Square

Deddington, Oxfordshire 0X15 OSG

Tel: 0844 8005067

Email: mail@mckinnon-medical.co.uk

web: mckinnon-medical.co.uk

J & M Medical

Unit 1, Wheatsheaf Colliery School Yard

Southwick Road, Sunderland

Tyne & Wear, SR5 1DD

Tel: 0191 567 4667

Email: sales@jmmedical.co.uk

web: jmmedical.co.uk

Dermagard Supplier:

Bonwyke Ltd

Unit 3

Salterns Lane Industrial Estate

Salterns Lane

Fareham, Hampshire PO16 0SU

Tel: 01329 289621

web: bonwyke.co.uk

email: sales@bonwyke.co.uk

Headscarves:

Sunsibility UV Protective Clothing

Tel: 0208 224 2299

web: sunsibility.co.uk

Sun Precautions (in America). Products can be ordered by internet.

web: sunprecautions.com

Solarweave Fabric Supplier: (if you want to make your own headscarves from UV protective fabric)

Rockywoods

418 8th Street SE

Bldg A-3

Loveland CO 80537-6477

United States

Tel: 970-663-6163

web: rockywoods.com

House and Windows

If you are extremely light sensitive, perhaps one of the first steps you need to take is to screen out the harmful light that enters the windows of your home. Even to screen a few of the most useful windows makes you feel more part of the world.

DermaGard is a transparent window film applied to the inside of your window that screens out more than 99% of UV and is virtually unnoticeable.

Bonwyke Ltd

Unit 3, Salterns Lane Industrial Estate, Salterns Lane, Fareham, Hampshire PO16 0SU

Tel: 01329 289621 Fax: 01329 822768

web: bonwyke.co.uk

email: sales@bonwyke.co.uk

Ultimate Tinting - Specializing in application of films and in window tinting for vehicles, the home and commercial premises.

Ultimate Tinting

Tel: 0800 011 2630

web: ultimatetinting.co.uk

Fluorescent Tube Filters

It is possible to purchase sheaths that are very easy to fit over fluorescent tube lights to screen out UV; this film tube is easy to cut, to shorten or to overlap to extend length. It is the duty of the employer to provide these for light-sensitive employees who have to work under fluorescent lights.

Sun-X

Tel: 0845 077 9007 or 01243 826441

web: sun-x.co.uk

Suppliers of incandescent light bulbs

These suppliers still have some incandescnet light bulbs left. It is always useful to compare prices. Other local electrical suppliers and market stalls may also still have stocks of incandescent bulbs.

BLT Direct, Unit 9, The Quadrangle, The Drift, Nacton Road, Ipswich, Suffolk IP3 9QR

Tel: 01473 716 418 (Sales - Line Closes 10pm) / 01473 559 501 (Customer Service)

Web: bltdirect.com

Ryness Lighting & Electrical Ltd, 187 - 191 Clapham Road, London SW9 0QE

Tel: 0845 6303035 (Monday - Friday 8.30am - 5.30pm)

Web: ryness.co.uk

The Light Bulb Company, Thomas Edison House, 41 Murdock Road, Bicester, Oxon OX26 4PP

Tel: 01869 362222

Web: thelightbulb.co.uk

The Lighting Superstore, Unit G11 Avonside Enterprise Park, Melksham, Wiltshire SN12 8BT

Tel: 01225 704442

(8:30am-5pm Mon-Fri; 10am to 5pm Saturday; Sunday from 10am to 4pm; Closed Bank Holidays)

Web: thelightingsuperstore.co.uk

Lightbulbs.co.uk

Tel: 0161 786 8320

Web: lightbulbs.co.uk

UV Photo-protective window film

Museum Film 200 (UV Dermagard)

The following chart shows that although this film provides a total block of UV rays up to 380 nm, the level of light transmission steadily increases with the longer wavelengths of visible light. It is important to note that almost 80% of visible light at 500 nm is being transmitted through Dermagard. (Manufactured by Sun Guard, Florida, USA)

Wavelengths (nm)Transmission (%)

380

400

420

440

460

480

5000.00

16.09

66.55

75.32

79.32

78.85

79.39

It is often assumed that protection against UV wavelengths (up to 380nm) will keep you safe. However some people are harmed by the blue spectrum of visible light (beyond 400nm). It is necessary to undergo light testing at a specialist light sensitivity unit to find out which wavelengths are harmful to you.

(Details of these later.)

If you need protection beyond UV, there are window films offering further protection, which can be found in the Bonwyke catalogue, though these may result in colour distortion or a very dim interior.

Blinds

A simple way to add extra protection is to add blinds to pull down when the windows are not in deep shade.

If your local blind company cannot provide what you want either in blackout or anti-glare blinds contact the British Blind and Shutter Association (BBSA) and they will put you in touch with a range of companies who will:

British Blind and Shutter Association

42 Heath Street, Tamworth, Staffordshire B79 7JH

Tel: 01827 52337 Fax: 01827 310827

web: bbsa.org.uk

email: info@bbsa.org.uk

Gro Anywhere Blind

A portable, extendable black-out blind. The versatile Gro Anywhere Blind has been designed to 'go' anywhere with you, and can be put in place in minutes. Attaches directly to the glass using suction cups, ensuring a close fit that really does block light properly. These blinds can be adjusted to window size by horizontal and vertical drawstrings.

web: gro.co.uk

Tel: 0844 557 2960

or from baby product stockists.

Sun Visor Window Foil absorbs 87% of harmful UV rays. Simple to install – just press it against your window and static will ensure it remains in place with no need for adhesives. Can be cut to fit any size or shape. Can be obtained from the mail-order company Coopers of Stortford.

Coopers of Stortford

The Despatch Centre

Haslemere Industrial Estate

Pig Lane

Bishop Stortford CM23 3HG

Tel: 01279 656551

web: coopersofstortford.co.uk

Car Windows

It is equally necessary to screen car windows against UV with something like DermaGard. It is necessary to have your car screened by an expert technician and it is not permissible to apply yellow film to car windows as this is against safety rules. It is illegal to apply darkened film to the windscreen but it is allowable to darken front side windows to an extent. Rear side windows and the rear window may be darkened to the full extent.

Professional Vehicle Window Tinting

John Geraghty

62 Vectis Road

Gosport

Hampshire PO12 2QG

Tel: 023 9252 5720

Mob: 07860 706310

Car Window Film and Visible Light Transmission (VLT)

If you have to have your vehicle fitted with window film due to light sensitivity, we have established from the Deputy Prime Minister's Office that there are no dispensations due to medical grounds. The windscreen must allow at least 75% of light to be transmitted through and the front side windows 70% VLT otherwise you are committing an offence. Anywhere behind the driver's seat (rear windows) can be as dark as you like! There is, however, a recognised difference between "light window tints" which may be considered safe for road use and "excessively dark window tints" which are not.

Passenger Sunshade

These precautions may still be insufficient to protect you from sun shining into the car window and in such circumstances you may need to cover yourself (face included) and travel as a passenger.

eclipse.lupusuk.org.uk/prod...

1. Three Light Sensitive Units

1. Department of Photobiology

Guy's and St. Thomas' Hospital

Lambeth Palace Road

London SE1 7EH

2. South Buckinghamshire NHS Trust

Department of Dermatology

Photodermatology Department

Amersham Hospital

Whelden Street, Amersham

Bucks HP7 OJD

3. Department of Photobiology and Photodermatology

Ninewells Hospital Tayside University NHS Trust

4. The Photobiology Unit

Salford, Royal Infirmary

2. Vitamin D and Calcium Deficiency

It has been noted that people with light sensitive conditions who avoid sunlight are at risk of Vitamin D and Calcium deficiency. They may need to take supplements and should be tested for this.

However family members who spend a lot of time in screened houses and screened cars could also be at risk and should be tested.

3. Helpful Hints on Lighting

Whilst most of us can only tolerate low-wattage incandescent bulbs, for all of us the situation can be improved by trying the following:

Using fittings that reflect the light off the wall or ceiling, rather than shining directly on you;

Shielding the light, even clear glass or acrylic helps, even better if shield is covered with dermagard film;

Having the light as far away from you as possible;

More smaller light sources are better than one larger one, e.g. 3 x 25W bulbs are better than 1 X 60W bulb.

As some people need to wear masks inside to protect themselves, even from incandescent bulbs if the bulbs are too powerful or too close, all these things are worth considering.

4. Optical Brighteners

It is advisable not to use laundry detergents containing optical brighteners (sometimes labelled simply as "brighteners") which cause clothes to absorb UV. This is released slowly to create the appearance of brightness and the UV is transferred to your skin.

5. Plants and Chemicals

Contact with chemical compounds found in plants, grasses, sunscreens, insecticides and various toiletries, combined with sun exposure can also cause severe skin reactions. Common culprits include parsnips, celery, parsley, dill, fennel, limes and lemons, which contain chemicals called furocoumarins, naturally occurring phototoxins which, along with the sun, trigger the reaction.

In the countryside, coming into contact with the giant hogweed, cow parsley or angelica can result in a red, blistering rash on sun-exposed skin, usually within 24 hours.

Bergamot and musk oils in fragrances and chemicals have a similar effect in people who are susceptible. Similarly, chemicals used in sunscreens to absorb UV radiation can also cause this.

What to do about it

Identifying the trigger for this type of rash is key. Keep a record of where and when your symptoms develop and take this to your doctor. Try using sunscreens which act by blocking UV radiation or ones designed for sensitive skin.

6. Choosing and Using Sunscreen

Introduction

It is estimated that at least 60% of lupus patients are adversely affected by exposure to ultraviolet which can trigger a flare in their lupus symptoms. Ultraviolet is comprised of UVB with a range of 280 - 320 nm. and UVA with a range of 320 - 400 nm. Some lupus patients are also affected by the blue spectrum of visible light which extends from 400 - 700 nm.

Choosing sunscreens - what to look for

All sunscreens contain chemical filters which either absorb or block UV radiation. Broad spectrum sunscreens are intended to protect against both UVA and UVB radiation. Some sunscreens such as those in the Sunsense range also offer protection against visible light.

SPF

Sunscreens in the UK have a Sunscreen Protection Factor (SPF) number. This indicates how long you can stay in the sun without burning compared to not wearing sunscreen at all. But this only applies to UVB radiation.

For instance, if your skin turns red in the sun (a sign of burning) after 10 minutes, applying an SPF 15 sunscreen should allow you to stay in the sun for 150 minutes without burning.

Some sunscreens may also be labelled as giving low to very high protection. This is directly related to the SPF number:

Low protection SPF 6 to 10

Medium protection SPF 15 to 25

High protection SPF 30 to 50

Very high protection SPF 50+

Star rating

Sunscreens also have a star rating on a scale of 0 - 5. This indicates the level of protection against UVA radiation compared with UVB. The higher the number of stars, the greater the protection.

Watch out though - if you choose a sunscreen with a low SPF, it may have a high star rating because it offers the same level of protection against UVA as UVB, in other words, both low. So beware!

Applying sunscreen - more is best

Most people don't use enough sunscreen. According to the British Association of Dermatologists, the body of an average adult requires at least six full teaspoons of sunscreen lotion. Make sure you are protected:

Apply sunscreen 15-10 minutes before going outdoors

Reapply when in the sun and then every 1 - 2 hours especially if perspiring heavily

If using other cosmetics, apply the sunscreen first

Top tips for staying safe in the sun

Sunscreens alone are not enough to protect you from the harmful effects of the sun. You should also:

Avoid the sun between 11 a.m. and 3 p.m.

Wear a hat, sunglasses, sun-protective clothing and, if necessary, a face-mask and headwrap as well.

7. Holiday Lodge for People with Light Sensitivities

Sandy Balls is a holiday village in the New Forest which has a specially adapted lodge to cater for people with XP and other UV sensitivities.

The site offers 2 restaurants with safe lighting and a swimming pool and other play facilities which can be safely used after dark. There are extensive shaded and sheltered walks on the doorstep of accommodation.

When booking, ask for Oak Lodge 11 which has:

Dermagard film applied to all windows

UV free LED or diffused lighting

LEDs may not be acceptable for some of our members. However you should be able to take your own lights. We always travel with minimalistic clip-on light fittings which can be plugged into any socket, plus our safe incandescent lightbulbs. In the bathroom we use a nightlight in an international adapter socket which can be plugged into the shaving socket. We always take portable black-out blinds but at Oak Lodge 11 you could appreciate the view outside.

Web: sandyballs.co.uk

Tel: 0844 693 3050

Address: Sandy Balls Holiday Village, Godshill, Fordingbridge, The New Forest, Hampshire, SP6 2JZ

Reply

I use Neutrogena. I believe 60spf. They keep increasing the spf. Someone told me there is no way any screen could be 90spf. I is not greasy and you can put makeup on over it. I also bought Aveena when the other was not available. I know how you are feeling. People look at the sun and talk about how wonderful. I want to say a little cloud cover would be wonderful. Life is crazy isn't it Sempafidelis1970.

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