Relief for those who suffer from Solar Urticaria/Sun Allergy - Immune Disorders Message Board

vkhtn · 03-12-2004, 01:03 PM

I have been allergic to the sun for 12 years. This disorder is called Solar Urticaria. After 8 minutes of sun exposure, I turn completely red where skin is exposed and it itches like crazy. The rash will last a few hours. Sometimes Benadryl (cream) will help the itching. A few years ago I started using Coppertone "Shade" SPF 45 sunblock. It works!!! I can finally be in the sun all day, in my car, take a walk and do normal things outside without trying to hide from the sun. It is wonderful. I have tried almost all sunblocks and none of them would work. A doctor told me about this sunblock. It has an ingredient called Parsol 1789. I think that might be the key ingredient. I may never get rid of this disorder, but at least I have found something that makes it easier to live with. I hope this info will help others.

I have tried to find others that also suffer from this rare disorder. I thought I was the only one. I have also tried to find research studies on this, but with no luck. After finding this site, I realize that there are a lot of people just like me. I don't want to settle with the fact that doctors don't know how to cure it. They have us trying all these different medications that really don't do much to help. I think we need to try to find the underlying problem to be able to cure it. I think we must all have something in common that caused us to develop this disorder. I don't know if it is something we were born with, something we eat, maybe another illness that causes it. I would love to find out. I would really like to start our own research study. I want to work on a very detailed questionare and then do some comparisons to see what we might have in common. If anyone is interested in getting involved with this or has any suggestions, please let me know. Maybe we can come up with the answers that the doctors can't.

FYI- I am a 44 year old female. I grew up in the sun, always going to the beach or pool and then 12 years ago, I became allergic to the sun. I don't understand.

I hope the sunblock helps.

patjam · 03-15-2004, 01:25 AM

Quote:

Originally Posted by vkhtn

I have been allergic to the sun for 12 years. This disorder is called Solar Urticaria. After 8 minutes of sun exposure, I turn completely red where skin is exposed and it itches like crazy. The rash will last a few hours. Sometimes Benadryl (cream) will help the itching. A few years ago I started using Coppertone "Shade" SPF 45 sunblock. It works!!! I can finally be in the sun all day, in my car, take a walk and do normal things outside without trying to hide from the sun. It is wonderful. I have tried almost all sunblocks and none of them would work. A doctor told me about this sunblock. It has an ingredient called Parsol 1789. I think that might be the key ingredient. I may never get rid of this disorder, but at least I have found something that makes it easier to live with. I hope this info will help others.

I have tried to find others that also suffer from this rare disorder. I thought I was the only one. I have also tried to find research studies on this, but with no luck. After finding this site, I realize that there are a lot of people just like me. I don't want to settle with the fact that doctors don't know how to cure it. They have us trying all these different medications that really don't do much to help. I think we need to try to find the underlying problem to be able to cure it. I think we must all have something in common that caused us to develop this disorder. I don't know if it is something we were born with, something we eat, maybe another illness that causes it. I would love to find out. I would really like to start our own research study. I want to work on a very detailed questionare and then do some comparisons to see what we might have in common. If anyone is interested in getting involved with this or has any suggestions, please let me know. Maybe we can come up with the answers that the doctors can't.

FYI- I am a 44 year old female. I grew up in the sun, always going to the beach or pool and then 12 years ago, I became allergic to the sun. I don't understand.

I hope the sunblock helps.

Hi
Just a quick one for now my son James 3 years 4 months has never liked the sun does immune deficency but he has to be fully coverd ie light weight shirt full length cotten trousers and hat and factor 60 sun block befor he will go out in the sun and even in winter when the sun is not nearly as strong he still does not like it and cover his face and starts to scratch himself also in summer he useually ends up coverd in a rash by the end of the day,but often during the day will want to stay indoors.
Pat

vkhtn · 03-15-2004, 06:54 AM

Quote:

Originally Posted by patjam

Hi
Just a quick one for now my son James 3 years 4 months has never liked the sun does immune deficency but he has to be fully coverd ie light weight shirt full length cotten trousers and hat and factor 60 sun block befor he will go out in the sun and even in winter when the sun is not nearly as strong he still does not like it and cover his face and starts to scratch himself also in summer he useually ends up coverd in a rash by the end of the day,but often during the day will want to stay indoors.
Pat

I have been to several doctors for this disorder over the years. I was told that it is an autoimmune disorder. Below is some excerpts from a web site that explains autoimmune disorders. I know that I can't list the link, but I don't know if I can mention the name of the site (probably the same thing).

Excerpt: "An autoimmune disorder is one in which a person's immune system begins to attack his or her own body. The immune system creates antibodies against its own tissues. Virtually every part of the body is susceptible to an autoimmune disorder."

Excerpt: "The job of the immune system is to protect the body from foreign substances. It is the immune system that fights off infections caused by bacteria or viruses. Sometimes a person's own tissues may be seen as "foreign" by the immune system. When this happens, the immune system attacks the body itself. This response is known as an autoimmune disorder."

Excerpt: "New research findings suggest that autoimmune disorders may be triggered by a transfer of cells between the fetus and the mother during pregnancy. The study involved women with scleroderma, an autoimmune disorder involving the skin. These women have more fetal cells in their blood decades after a pregnancy than women who don't have scleroderma. While further research is needed to substantiate these findings, the study does offer an explanation for the much higher incidence of autoimmune disorders in women than in men."

I find the last excerpt particularly interesting because my mother has RH negative blood and my father has RH positive. This can cause problems for the baby. I have been wondering if this is the key.

I would be very curious to know if there are others with Solar Urticaria that have the same circumstances as mine. I wonder if we all have this in common. I also have other health problems and wonder if they are all some how related. If anyone knows, I would love to hear from you.

AmyTx · 03-30-2004, 02:39 PM

I developed Photosensitivity as a child when I was having field day at school.. I broke out in a horrible itchy rash.. I can be out in the sun for a while but if I get sunburned thats it im itching all over with a horrible rash or even sometimes the rash developes without a sunburn.. I am a fair skinned red head and was always told I have sensitive skin.. I am just now under going testing to find out some other health issues im having and im curious if its related or not.. So far I have antithyroid antibodies and high antinuclear antibodies with possible lupus and photosensitivty is one of those symptoms... im very surprised that it has a technical term for it as I thought I was the only one that had this.. I have always had to wear the strongest sunscreen.. last summer I went to the beach and I wore sunscreen and I developed sun poisoning and I swelled up and had a horrible rash too...

when i hear more about my lab results I will come back here to post thanks..

vkhtn · 04-01-2004, 02:53 PM

Quote:

Originally Posted by AmyTx

I developed Photosensitivity as a child when I was having field day at school.. I broke out in a horrible itchy rash.. I can be out in the sun for a while but if I get sunburned thats it im itching all over with a horrible rash or even sometimes the rash developes without a sunburn.. I am a fair skinned red head and was always told I have sensitive skin.. I am just now under going testing to find out some other health issues im having and im curious if its related or not.. So far I have antithyroid antibodies and high antinuclear antibodies with possible lupus and photosensitivty is one of those symptoms... im very surprised that it has a technical term for it as I thought I was the only one that had this.. I have always had to wear the strongest sunscreen.. last summer I went to the beach and I wore sunscreen and I developed sun poisoning and I swelled up and had a horrible rash too...

when i hear more about my lab results I will come back here to post thanks..

I tested positive for Lupus about a year or two after developing Solar Urticaria. All of my tests have been negative since. I was told that it is possible to have false positive/negative results from tests. It's been several years since I was tested. I was also told that it could be the beginning stages of Lupus. I have other related symptoms as well. I would be interested in hearing about your results. You can get a lot of good info about Urticaria from the "Allergies" section of this site. It appears that there are a lot of people who suffer from this. Like you and many others, I thought I was the only one. I don't know anyone personally that has this problem. I wish you all the best with your test results. Thanks for sharing.