Extreme UV Sensitivity, are there any treatment options?

[DavidG]

I am seeing a new rheumatologist who ran a bunch of tests and found I have 3 SS markers (Salivary Protein 1 IgG, Carbonic Anyhd. VI IgG, Parotid Spec Protein IgG). I first had sun/UV sensitivity in 2011 after getting Epstein-Barr virus. Only after I stayed out of the sun for 3 months straight did the EBV finally go away.  The sun/UV sensitivity then remained for about 1 year, which would cause insomnia if I was in the sun more than 10-15 minutes. Then it finally pretty much went away and by 2014 I could be in the sun for hours with a hat and sunshirt with no issue.

In Feb. 2020 I was doing a lot of work in the sun and the EBV came back. I got over it fairly quickly that time, but was not careful for long enough, was in the evening sun for 30 minutes in Feb. 2021 and the EBV and photosensitivity came back a 3rd time.  It was worse the 3rd time and harder to get rid of.  Finally by Jan. 2022 the EBV symptoms had gone away and I was fine getting a few seconds of sun here and there and being outside in the shade.

In early March I overdid it, made a few trips during the day over a 4 day period (despite being very well covered) and the photosensitivity got MUCH worse. I now have to have 3 layers of curtains over all the windows in the house, or my face, hands, arms and upper back start to feel hot and flushed from even the smallest amount of UV.

My questions for the forum: Has anyone had similar experiences and are there any effective treatments for this?  Or am I just going to be stuck in the dark for who knows how long?  Is this a Sjogren's "flare-up", and how long do I need to stay out of all UV before it starts to calm down?  Am I at risk of making it even worse by going out to Dr. appointments? (I'm trying to do them by phone but some Dr's only want to do in-person appointments.)  And last, if anyone knows a rheumatologist, dermatologist, or other practitioner who has successfully treated this type of extreme UV sensitivity before please let me know their contact info. Thank you for any help or tips. I am very much hoping there is some sort of pharmaceutical or other treatment that can get me back to some sort of normal level of UV tolerance soon.

[Scottietottie]

Hi 

I had extreme sensitivity while I was taking plaquenil. not so sensitive now I've stopped but I don't like the sun the way I used to.

I hope you can get answers.

Take care - Scottie 

[AlienDog]

I am ultra sensitive to the sun as well, but I never attributed insomnia to it. In fact I've rarely discussed it with my doctors other than to be told to limit my exposure to it, which I'd already figured out. The sun causes issues with my skin, eyes, headaches, muscle cramps, and confusion, though most of that is attributed to heat, rather than to the light itself.

[meirish]

David, I am so sorry to hear of the things you are going through with the sun sensitivity. Have to admit that I have not heard of anyone on this forum being so sensitive and I have been on here close to 15 years.

I have some sun sensitivity and have had it for years. I will get flushed and my skin gets very prickly. My immunologist told me the medical term for this reaction but I forget it. I don't go in the sun much at all. Cover my legs with hand towels when I drive with shorts on and wear long sleeves most of the time. Sunscreen on my body and long sleeves in then sun plus a towel over my legs in the summer. Also wear a hat and sunglasses and usually put my back to the lake as the suns reflection plus the wind will do me in(wind gets to my eyes and sinuses)

I am wondering if you have done any searches at universities in every state....especially the U's in the sunbelt. I  would bet there are a lot of studies going on and people doing research on this subject. There are not a lot of people, I don't believe, with issues as severe as yours. I would bet that there are enough people that research is being done. So many autoimmune issues are showing up these past years and lots of things going on. Also, you had some interesting blood work and might find a rheumatologist or an immunologist who does big time AID and genetic studies on issues like yours. Research on line...even finding 800 numbers online for places doing research. Try searching online government agencies also for research. I know that I have spent a lot of time online digging up information on these AID as I have 5 autoimmune diseases plus my husband had and 3 children all have autoimmune issues.

Sorry to say the only way to find info is to work hard researching on your own. We have to advocate for ourselves as the doctors don't always understand how we feel and don't have the time to research for us. If we can find one doctor who "gets" it we can usually get a referral which leads to another referral.

I don't know about the sun causing the insomnia, but I will tell you that it took me almost 40 years to get diagnosed with my 5 diseases and the one thing I noticed over the years was that I would get so uneasy and have insomnia for some days. Just couldn't settle down at nite. It took me years to catch on to the fact that this usually happened prior to me not feeling good with fatigue, weakness, body pain, lots of things that I later could attribute to probable flares of AID. I would pursue the Sjogrens and also lupus. See some darned good dermatologist. Search out ones that deal with lupus and other AID involving the skin.

I would also keep track of what you eat and drink or chemicals around you that could be contributing to your skin sensitivities. Do not give up. Just keep on trucking and researching and looking on line for doctors at different universities that could help you out. I sure made the rounds all those years I didn't feel good. One doctor even told me II would be "hard pressed to find anyone in MN who would treat me". I cried a lot that day. Made me so mad that I just researched more. Good luck and keep us updated on how you are doing. Also, use a library if you can. Investigate the sunscreens you are using also.

By the way, have you had blood work for sjogorens or lupus? Good luck. meirish

[DavidG]

Hi meirish,

Thanks for the tips, yes looks like I have a very long time ahead of waiting in the dark and trying to find a Dr that can help. My labs showed only the 3 "early-SS" markers I mentioned, no actual clear SS or Lupus markers. And I have none of the other symptoms typical of those. If you know any MDs who have been helpful to you and your family please let me know their contact info.  Even if they are 1,000s of miles away that's fine. As it is it may be months before I can get in a car and drive anywhere during the day. I had started seeing a rheumatologist who is supposed to be very good and who did 20 pages of labs on March 8th, but now I do not want to risk making things worse by driving to an appt., and he completely refuses to communicate in any way other than me going to his office. Apparently my health is not as important to him as his getting patients thru the door where he can then probably charge more to insurance than for a phone appt.  Probably several rounds of additional tests will be needed to figure things out and then there may be no particularly effective treatments anyway other than staying completely out of all UV for a few months. Sounds like I will just have to start making a bunch of phone calls and sending emails but hopefully someone on this forum already knows an MD or researcher who might be able to help.

[meirish]

What part of the US are yo from so people know if they are in your area?  Might be able to ask about virtual visits when you do searches. Most docs won't do for first visits but they may for you if they have your blood work and test results. Even to get another dr referral from someone is a big help. Good luck. meirish

[DavidG]

I'm in San Diego CA, and yes if anyone knows any Dr's anywhere within ~500 miles who have successfully treated extreme photosensitivity / sun allergy please let me know. I seem to be stable at the moment but being stuck in a dark house all day is not fun. Wife is not happy with most of the house being dark either. Hopefully this is a "flare up" and starts going away in a couple weeks.

My second question though is still IS THERE actually any effective treatment for this kind of photosensitivity?  Or do people just have to stay in the dark for a long time and then wear hats, UV clothing and sunscreen forever?

From a biochemistry perspective, seems like what might be happening is something in the mechanism that cleans up UV damaged cells might not be working, thus they accumulate, thereby eventually triggering an immune response.  So maybe the question is more how can the mechanism that's not effectively cleaning up UV damage (root cause) be diagnosed and fixed?  If that could be done, the secondary immune reaction might then never be an issue.  Thanks

[meirish]

I have to admit that I have not had severe reactions like you have. I just avoid the sun as much as possible and always wear sunscreen(helps prevent skin cancer and I had one squamous ca on nose and a mols procedure couple years ago.)

I was having reactions to the sun many, many years before my diagnosis with any of the 5 autoimmune diseases. Back in the 80's I noticed tingling in skin when in sun and gardening. I would also get flushed skin and the tingling or needles would stay for several hours. I started wearing better sunscreens, long sleeves, sunglasses and a hat when I gardened. I gardened a big garden and many hours. This did help. I had no notion of any flares etc. I suffered from joint pain a lot plus bad fatigue, and lots of other strange ailments but never thought of a flare as I would rest as much as possible after work, etc.

I also would wear a mask when I gardened. I am an RN and was very familiar with masks and had some allergies and many upper respiratory infections. etc. Thought it might protect me, etc. Good thing I wore the mask as I was diagnosed years later with severely low t-cells and had increased infections over the years.

There is always the possibility that living in CA with all that sunshine and the reflection of the ocean quite evident in areas that you may have increased sensitivity. Try living in Minnesota where the clouds are more common, rain, thunderstorms, etc. We don't get quite the onslaught of sun rays that you probably do. That in itself might be worth investigation.

I have been on IVIG...intravenous gamma globulin monthly since 2006 for my myasthenia gravis plus it helps the bullous pemphigoid skin disease I have. It might be that this helps prevent worse skin reactions to sun. Have to admit my sjogrens is getting worse but I am getting old so who knows. Can't figure out a whole lot of the why's and where fors to these diseases. Just know that stress and fatigue make things worse.

I have to keep life rather simple. Many things I would like to do but don't have the strength or endurance to carry a lot of these things to fruition. I have always had to rest some every day even when my kids were little. A sit down rest or short nap. I kept an egg timer under the couch so I could lay down and set the timer for a short nap as needed. Do whatever works to get things done. I have done a lot of research but never read or heard of anything other than avoiding sun to control things. Good luck. meirish

[Joe S.]

David, I am sensitive to the sun. I wear spf50 clothing. Long sleeves and pants year round. I have an spr50 hat with wide brim. On our summer trip from Minneapolis to Campbell River,  my wife does most of the driving now. I put a sun screen on my side window and use the sunscreens for the windshield as covers for my body. My sweat glands went early on, so I try to stay cool. Our minivan allows the driver and passenger to set temperature individually.  My side is usually as cold as I can get it. I also have a pair of finger less gloves that I wear when traveling.

I bring a portable zero-g recliner to sleep in when we travel.

I do not stop in much any more so a PM is the best way to contact me.