Top products from r/lupus

The Environmental Working Group has a comprehensive list of the best sunscreens and the ones you should avoid: EWG Best Sunscreens . Take a look!

I like the brands Kiss My Face and Neutrogena, personally.

And make sure not to rely on sunscreen alone! Sunscreen has to be reapplied in good quantity on a regular basis. It’s good to wear long sleeves and a hat, as well, preferably in fabrics with UPF.
Examples of UPF clothing lines are Coolibar and Mott 50. . Places like Dicks Sporting Goods also carry sun protective clothing.
You can also use something like Rit Sun Guard to treat your clothes and give yourself extra sun protection for up to 20 washes.

You might also consider investing in a sun blanket or an umbrella with UPF as well.

Stay in the shade and avoid direct sunlight. Photosensitive lupus patients are supposed to avoid going outside in the sun between 10 AM and 3 PM, as that is when the sun is strongest.


Stay safe and have fun!

I've heard that certain types of water don't quench thirst like other water. I can't remember what the deal was, it's been a few years, but it had something to do with the type of water you're drinking. Some water doesn't really satiate the thirst and stick around and go where the hydration needs to be in the body like other water. I can't remember the name, but there was some device that does something to the water to make it better for you and more hydrating.

Found this news story from ABC at the link below, and it has to do with the alkalinity of the water you are drinking. Distilled water, for instance, is very bad for you, because all the good stuff has been taken out of it. It can actually cause bone loss, which it did to me for many years before I got a clue that I shouldn't be drinking it. You can also get alkaline test strip paper and use your saliva to tell how alkaline your system/body is. Foods like sugar can cause your body to become more acidic and some fruits and things like pineapple can cause the body to become more alkaline. Having an acidic system can cause your body to be more likely to lean toward health issues, while having an alkaline body is better for your health.

There are at home machines that can make alkaline water for you, and there is also alkaline water you can buy. You can also add drops to your water to make it more alkaline. It's good to use the test strips to test the bottled water you are drinking, because there are many bottled waters on the market, even name brand bottled waters that are actually less alkaline than is recommended for human consumption. Possibly you are drinking one of these waters and it is leaving you dry.

https://abcnews.go.com/Health/alkaline-water-claims-offer-greater-hydration-health-benefits/story?id=33268980

Here is the test paper like I have at home. I've had it for a very long time and it still works fine. You can use it to test the saliva or urine that comes from your body to see where your system stands. Just tear off a small strip, test it, and compare it to the colors on the cartridge to see where your pH level is at, and respond accordingly with whatever changes are needed to make your body more alkaline and more healthy.

https://www.amazon.com/Micro-Essential-pHydrion-dispenser-5-5-8-0/dp/B0001SR4NM

And here is an article on the importance of having an alkaline system...

https://www.livestrong.com/article/444199-what-are-the-benefits-of-alkaline-in-the-body/

I would definitely check out /r/SkincareAddiction/! The lovely peeps in there give excellent advice. Specifically this side wiki. You can always post there, and they can help you, but I can try, too.

Things I need to know:

• Face only, or do you want something for your body?
  
• Are you acne prone?
  
• Are you sensitive to anything specific, that you know of?
  
• Do you wear makeup?
  
• How much are you in the sun?
  
• Do you plan on getting all sweaty?
  
• What's your budget?
  
  If you never answer me, just keep this in mind: The amount you need to get the SPF labeling on the bottle is about 1/4 teaspoon for just your face. Since SPF is on a logarithmic scale, 1/8 teaspoon of 100 SPF does not equal 50SPF, it measures like 10SPF. waa-waaa.
  
  For me, it depends on what I'm doing. My everyday under makeup is EltaMD Clear, SPF 46. Super light weight, soaks in fast, I really like it. Totally worth the price (for me). If I'm going outside in the sun for any length of time, I go with Neutrogena Age Shield Face Lotion, SPF 110. Basically, any SPF over 30 is what's important, the difference between 30SPF and 100 isn't that much. :/
  
  edit: du'oh, formatting.

I love my Bed Buddies microwavable heat packs for keeping warm and toasty. Booties with removable insert for my feet https://www.amazon.com/Carex-Bed-Buddy-Warming-Footies/dp/B000KBLKTO (Don't use them to walk around on wood or tile though. Very slippery.) and the back wrap is good for anywhere, really. https://www.amazon.com/Bed-Buddy-Deep-Penetrating-Back/dp/B015RY4P90/ref=pd_lpo_vtph_121_tr_img_1?_encoding=UTF8&psc=1&refRID=N26CC3NS3MFY14X27VRB

They are basically cloth bags that contain rice, so you can make you own at home out of a tube sock, for example. Do not microwave for more than 2 minutes. Start at 1 minute and go up from there if warmer is desired.

Warm feet = warm body. I have a foot warmer heated rubber mat under my desk at work. This or another brand like it, and they come in different sizes. Smaller is fine. https://www.amazon.com/Cozy-Products-FWB-Warmer-Warming/dp/B0013V1PYA/ref=sr_1_12?s=home-garden&ie=UTF8&qid=1521263745&sr=1-12&keywords=under+desk+heater+for+office

do other people take fish oil? how have you found it??

while this is a mice study, relating to a specific lupus trigger (silica), i thought it was interesting.
"According to Harkema, the DHA could be changing the way these cells, also known as macrophages, react to the silica in the lungs and somehow alter the immune system's response."

i took some and noticed an improvement, but stopped because i was getting an aftertaste of lemon, which is lame, i know.

i spent ages researching which was best; £40-50 a bottle, but they're amongst the best.
nordic naturals; https://www.amazon.co.uk/d/Essential-Fatty-Acid-Nutritional-Supplements-Oils/Nordic-Naturals-Ultimate-Omega-Fish-Soft-Gels/B002CQU564/ref=sr_1_1_a_it?s=digital-text&ie=UTF8&qid=1492902398&sr=8-1&keywords=nordic+naturals+oil

Found it! Apparently she actually ordered it online, but it's called Medline Remedy with Olivamine Skin Repair Cream. The people of Amazon agree with me that it's delightful... nearly 5 stars. :)

https://www.amazon.com/Medline-Remedy-Unscented-Olivamine-Repair/dp/B008107QBM/ref=sr_1_4?gclid=EAIaIQobChMIt-vFrq_Y5QIVycDACh2ECA6UEAAYASAAEgIN7fD_BwE&hvadid=177783604484&hvdev=c&hvlocphy=9018901&hvnetw=g&hvpos=1t1&hvqmt=b&hvrand=14904278741328473427&hvtargid=kwd-2367007645&hydadcr=21910_9712319&keywords=medline+remedy+skin+repair+cream&qid=1573138979&sr=8-4

Ezy Dose Weekly AM/PM Travel Pill Organizer and Planner │ Removable AM/PM Compartments │ Great for Travel (Large) https://www.amazon.com/dp/B00609IOWQ/ref=cm_sw_r_cp_api_i_kv21DbHD3YMJY

I use this one and have had for over 3 years and it’s great! Only fill once a week.

Awwww, you're so sweet! I hope you feel better soon.
Another thing that helps with the blood clots are turmeric pills, which can be ordered here:
http://www.amazon.com/Life-Extension-Bio-curcumin-Vegetarian-Capsules/dp/B000X9P5GM

(but word of warning- DO NOT take if you are already on blood thinners, like Warfarin or Coumadin)- it will thin your blood excessively.

Get better soon! <3

NOW Supplements, Instant Energy B-12 (2,000 mcg of B-12 per packet), 75 Packets https://www.amazon.com/dp/B0019LVHEC/ref=cm_sw_r_cp_taa_GNW0CbYC6WBQE

These help. They are more effective than B12 shots, in my experience.

To piggy back on the idea of wearing a face mask, these were also a good tool to have when I was traveling when I was immunocompromised:
https://www.amazon.com/First-Defense-Nasal-Screens-7-Sets/dp/B004KQF9QA (They have different sizes for different sized faces- my husband accidentally bought the larges and they were comically large on my face)

They're more discrete than face masks and it was something to help filter the recirculated air in the plane without feeling so self conscious :)

A very in-depth, but accessible book about lupus, as recommended by my rheumatologist:

https://smile.amazon.com/Lupus-Book-Guide-Patients-Families/dp/0199929408

This one isn't strictly about lupus, but put me on a dietary/lifestyle change path that put my lupus into remission:

https://smile.amazon.com/Autoimmune-Solution-Spectrum-Inflammatory-Symptoms/dp/0062347489

This one is also more general to autoimmune diseases, but contains lots of helpful info:

https://smile.amazon.com/Autoimmune-Wellness-Handbook-Chronic-Illness/dp/1623367298

I didn't really have any symptoms other than retaining water until I hit 15% kidney function. I think the main thing that has helped is maintaining a decent diet. There are a few books I've read as well that helped me set up a plan that works for me because everyone's body is different. Coping with Kidney Disease: A 12-Step Treatment Program to Help You Avoid Dialysis The biggest thing has been the fatigue and shortness of breath but my doctor tells me after I start dialysis it should get better.

I use this one: https://www.amazon.co.uk/Ultrasun-Extreme-Formula-Once-100ml/dp/B0026M7SM8

I’ve found it absorbs quickly and I love that on my body I can use it in the morning and not have to regularly top it up (on normal out and about days, if I was at the beach or something I would). I do sometimes reapply to my face as I am a face toucher and it’s where I get my rash the most. I can also use it on my son who reacts to all normal suncream too.

TheraMed Instant Cold Packs for Injuries - Pain Relief Ice Packs for Injuries - Disposable Cold Packs for Sprains, Inflammation, Strains, Muscle Pain - Ice Packs for Athletes - 8 in A Pack https://www.amazon.com/dp/B07NSJQYNF/ref=cm_sw_r_cp_api_i_XBhwDbCX8T1QB

Wow that’s a lot of words. I keep a box around of these or something similar on hand. Especially when my face gets red and puffy.

https://www.amazon.com/Lupus-Encyclopedia-Comprehensive-Patients-Families/dp/1421409844

The Autoimmune Paleo Cookbook

sorry i was so vague, yea sugar is essentially in almost anything, but avoiding added sugars helped me out a lot, fructose and all that bothers me sometimes but nowhere near as bad as added.