LOL, I just sat down to rest a bit after packing up bathroom, and I see your post reminding me of the stuff I know I will forget!!! Thank you so much for that.
Your question on photosensitivy, if you read my illnesses below my signature, it shows the Lupus, Sjogren's Syndrome, Porphyria, and possibly have PMLE, which is debatable. With Lupus alot of people with Systemic should avoid the sun at all costs. It makes me sick, and long term can throw in severe organ involvement. With Sjogren's Syndrome, one of the anti-bodies I have causes this big time, the RO/SSA antibody is definitely a huge factor in this as well. Then the third lovely thing is the Porphyria, this is an illness in which someone is lacking an enzyme that is used to transport iron through the body. If you are deficient in one or more of these 8 porphyrin enzymes as they are called, you will more than likely develop that form of Porphyria. We are not sure which enzyme I am deficient in, but my form is an acute form with Photosensitivity, so either Variegate or Corpo is likely. I have issues with possible iron overload, but then go to enemia, don't ask how because I don't know either.
Symptoms-well, I hope you have alot of time to read about this. I get severe red butterfly rash within minutes, even with spf 60, full cover etc. I always wear a baseball cap, long sleeve hoody, crank up the air in the car, and even have my windows tinted. I get hot, sweaty, have had heat stroke, rashes everywhere, but not just one kind, LOL, about 3-4 ones depending on which is bothering me of the 3 with the sun, or if all three are. My skin is bright red on fire with sunburn longer than an hour, and I itch fiercely. I can take antihistamines for some relief, but they make the sun sensitivity lighter. I have severe body pain, abdominal pains from Porphyria, anxiety attacks-Porphyria, Psychosis-Porphyria, mini seizures-Porphyria, bone pain-Porphyria, swelling like severe allergic reaction-Porphyria, migraines, vomitting, vertigo/dizziness, constipation or severe bowel movements with IBS, severe muscle pain or deterioration, and severe drop in glucose levels. We use glucose/sugar/dextrose to keep in my body to control the pain and keep the iron from entering my liver too much. So far my liver is healing.
I don't know a day that is pain free but through a raw food diet, and walking it helps. Alot of the meds used for Lupus I cannot take due to the Porphyria. I am lucky I tolerate the Plaquenil. Most pain levels are a 6-7 but when at a 9 for a few days I am gone to crabbiness. I just got out of the hospital two weeks ago, but man I feel better. I hide in the dark, literally and must keep my home completely black. 15% of people with Lupus and this Sjogren's Syndrome antibody have Porphyria and do not even know it. If they would test people could be taken off the dangerous meds and could get things under control.
I hope this helps you. If you have anymore questions let me know. Thanks
sle 99 w/cns & autonomic involvement 11/05, photosensitive 04/04, sjogren's syndrome 99, ra 99, fibromyalgia 8/05, sinus tachycardia 6/04, asthma 96, allergies to artificial dyes, sulfa, penicillin, cephalosporin 06/04, idiopathic neuropathy/neuro pain 11/05. Epilepsy 3/06, prob mini-stroke 5/06, Porphyria 5/06, Vitamin D deficiency severe 4/07. Meds are baclofen 40 mg, prenatal tabs, calcium, potassium, vit D prescription 50,000 iu, qvar, albuteral, singulair, plaquenil 400 mg, tramadol 400 mg, darvecet 100 mg, artificial tears, stuff for the sjogrens.