Hives from sun, becoming nocturnal not feasible

This just started last summer, but I am getting hives any time I get even a few minutes of sun on my face or neck. They crop up several hours later. I can knock them down with a little prednisone, last time just 5 mg a day for two days worked but usually I do something like 10 10 5 5 5. I got some super strength sunscreen and will try it. Usually I don't bother with sunscreen since my only exposure is to and from my car and five minutes picking up after the dogs in the backyard. But even that is too much now. I just hate gooping that sunscreen on my face and neck.

Just wondering if any others have this and how to cope, other ideas. It's especially a pain given other happenings which I'll post under social chat. And I need to find a hat to wear with nice work clothes, like if I go out to lunch.

Erica

Sorry, I don't have that problem (yet). I can sure sympathize with you though. That is one of my big fears. Maybe up the Plaquenil?

How much plaquenil do you-all take? My rheum listened to my litany of complaints that are mostly on the mild side and come and go and suggested 'upping' to two a day but he missed that I already usually take two a day in the summer, one a day in the winter. Wondering what dose others take (200 in each pill). Also I'm wondering if maybe the plaquenil actually causes some of the weirder things like even the hives (it can cause greater sun sensitivity) and the cough. I know it can actually ward off more serious lupus issues so I don't plan to go off it.
Erica

I was also told to make sure and take my plaquenil, because it does help with hives. I'd also suggest the combination of antihistamines I've been put on, as this has helped a lot. I'd get hives just from wearing socks, so rubbing my hands, leaning on a desk working would cause hives on my forearms. I didn't notice hives with sun, but heat would cause hives, so I was taking no showers, or cool showers,but when I dried off with the towel, I'd hive.

I take Zyrtech in the evening, Allegra in the morning and zantac twice a day, with another H2 blocker/gerd medication, but it's generic and I can't remember.. well, all of them are generic, but I do remember the others brand name. I also have an antihistamine nasal spray and eye drops, along with saline spray and artificial tears, because all the drying up from the histamine sprays makes me very dry. I have steroid creams and anti-itch creams, but they don't work all that well unless I'm almost constantly putting them on. I also take 5-10mg of prednisone daily, alternating days, but feel best on 10-15mg. I still get some hives and I do itch everyday, but at least I can tolerate it without scratching myself raw.

I was in last week to get an MRI (post transplant follow up) and just found out that I have new sinus cysts 2-3 centimeters on one side and 8 milimeters on the other side. There were not there last year. I have had headaches every day, which I would think might be from these cysts. I can't imagine what they would have been like, if I wasn't taking all the steroids (oral and nasal sprays) When ever I try to decrease the dose of prednisone, my headaches get so much worse. I'm still wheezing, unless I'm on 5-10mg of prednisone and if I drop to 5 each day, I start to wheeze all the time. I suspect I'll end up on a steroid inhaler tomorrow when I see the immunologist, although now I'm not wheezing, but the rheumatologist got to hear it. Even when he heard it, it wasn't at it's worse. I should have tapered the steroids more,so it would show itself again and the immunologist could hear it, but I forgot. I told him the last time I saw him, but he didn't seem to be listening and I wasn't wheezing at the time. Hopefully he'll read the rheumatologists report. I hate when it seems a doctor isn't listening or believing what you say and you just have to keep suffering,or in my case --- keep taking steroids to feel better. I don't know what else they would do any way and since I feel better on the steroids, so be it.

So, does anyone know what it means to have bilateral nasal cysts and is 2-3 centimeters big, or small? Seems kind of big to me. Do they do anything for them, or just watch them? Can it be something other then a cyst, like malignant, or would they know that from an MRI? Just what I needed, another thing to worry about! I'm sure it's nothing serious, just another annoying symptom of autoimmune disease. I guess!

You don't have to use "goop." Neutrogena has a nice dry finish sunscreen that goes up to at least SPF 70 and doesn't feel greasy or clog pores.
Norma

I dont get hives, but I do get a rash from the sun it burns and itches, I found that sunscreen helps ALOT. I used coopertone oil free with an SPF of 70. It stops me from burning and itching, I put it on everyday...even just driving to work will cause it, it doesnt stop the wonderful rosey cheecks though. Im not sure if the Imuran is working at all, but I do carry cortazone cream with me RX strength just in case. If I feel a burn or itch I just apply it that seems to help too.

Yes, burns and itches,that's it - I don't know what would make it hives or not. Sometimes it is raised. I think driving time exposure must be a factor for me too. I got Aveeno and Neutrogena sunscreens, one is a 70, one a 30, one is for sensitive skin and one is for face. I have the rx cortisone cream too and it seems to help a little, I have used it at night.

I'll be in TX this weekend (Frisco and Stephensville) so it will be a big test of staying covered up. I have a very goofy looking hat that has a flap that covers the back of my neck, I'm bringing it but will I wear it?

I was afraid the sunscreen might not help since it's hard to get every little spot esp. around the edges of my face and that it might irritate my skin even worse, but I'll take your endorsement to heart and give it a good try.
Erica

Plaquenil - 200 mg's twice a day. All year.

I used the Neutrogena sun screen 70, post transplant on a bald head and on my face with no problems. I was VERY sensitive to the sun post transplant, because of all the drugs, so it was required and doctor would remind me how important it was post transplant. Not only because of the drugs I was on, but because my body was trying to reverse autoimmune disease and if I exposed myself to a "trigger" such as sun exposure, I could start producing more autoantibodies, while my body was trying to distinguish them. Sun exposure for lupus patients is a big no, no and he reminds me every time I see him.

I also liked the brand, as it was non greasy and absorbed easy, with no problems irritating my skin.

this past weekend I tried Water Babies for sensitive skin and it didnt seem to bother me. Some of the sunblocks give me hives. Water Babies is also from coopertone but I couldnt find the spf I was looking for only 30. Its also no greasy and absorbs fast. I make it a point to put it on every morning. The first few days are the hardest. Once you get into a routine its not so hard. And as for the hats, I took Kims advice. I dont care for hats, I use visors. I like the kind with the velcro band that I can put under my hair if Im wearing it up. I found that on clearence at walmart of all places for a dollar. I got one in every color they had. I keep one in the car, in my agility bag. I dont really care what anyone says anymore. I dont burn from the sun and I get to stay outside.

The sunscreen is helping. One day I forgot to put it on my hands and got hives only on back of one hand. Yesterday I did spend a couple of hours outside, after 3:30, and now have a bad case on my neck and chin (might have missed the chin but I for sure gooped up my neck).

Jennifer, how much plaquenil do you take?

I found some elbow length purple stretchy cotton gloves that I bought about 25 years ago for fun and I'm going to keep them in the car for protection while I'm driving. Eccentric yes but less itchy.

I only use products that say 'for face' on my face hoping to avoid blemishes from clogged up pores. The Aveeno brand seems to be working pretty well and isn't too objectionable, very mild scent and decent texture.

I do wear hats, I used to get lesions on my scalp and patches of hair loss around them. Jennifer how do you protect your scalp where your hair parts? That's where I had the most problems, I still have scars.
Erica

I take 200mg 2 times a day. I guess thats the normal doseage. If Im out in the sun for long periods of time my hair is typically pulled up into a rubberband. So there isnt a part for the sun to get to my scalp. I have scabbs but its from me itching in my sleep. No idea how to stop that. Oddly I still have ALOT of dandruff even with being on pred. For the clogged pores thats why I have always try to use the oil free. I do was my face when I get home. Right now becuase of the steriods my skin is horrible.

As for your gloves you should put on some big sunglasses while you drive too. To give the full effect maybe throw in a pretty scarf around your neck.

I bought Coppertone Water Babies 70+ spf. I don't have the rash yet, and if I can only remember to use it 3 times a day, I might be better off. (Maybe it is time to set another alarm reminder.) I am enjoying the thought of using hats. The purple gloves, scarf, and sunglasses would really be fun. I am not one who likes to shop. And crowded malls are definitely on my avoid list. I like Wal-mart because it is 24 hours so I can go late night. Last Christmas I found how much I enjoy internet shopping. Where do you find hats? I have noticed a few sores on my scalp, and didn't know what it was from. Maybe a hat will take care of it.

Hi Erica, just out of curiousity do you have any other lotion on your skin? Years ago, I use get hives from the thicker lotions (such as coco butter) and some sunblocks. I don't think it was a sun allergy, but it was my pores not being able to breath under thick lotion or it was an allergic reaction to the lotion. Luckily since then lotions have becoming much more wearable, stick with stuff that is geared towards kids. Apply 10 or 20 min before you leave, it should not be goopy. I'm currently using, coppertone nutra shield SPF 70. No bad reactions to this brand.

I'm really fussy about lotions and scents and things like that, I use unscented products, and usually for sensitive skin. On my face I only use sensitive skin face moisturizer, like Lubriderm or Neutrogena. I don't wear any makeup. I use Dove sensitive skin soap, etc. I don't mean the sunscreen is goopy in that it is an oil slick, just compared to the bare skin I usually sport it feels goopy to me.

On Thursday I got a bit too much sun and ended up with bad hives on my neck. I took 5 mg pred that evening which didn't knock them down so I took another 5 - that took care of the itch and it was very mild the next day, just used a little cortisteroid cream and that worked fine. But of course, since I had one day of 10 mg pred and then nothing, I felt awful yesterday - headache, flu-y, slow. I think it might be kind of dumb to shock my system that way but on the other hand, it works, I only suffer for one day, and how could it be worse than a dose pack or other quick taper? How bad is this approach do you all think?
Erica

Erica:

There was a time when I'd say that was a bad idea. Not any more. I say whatever works best to get you through each day.

Oh, Erica, I posted it on the old board, but check out the Solumbra line of clothing--they can keep nearly every inch of you covered, and some of their stuff is pretty stylin'! Yes, it's kinda expensive, but NO PREDNISONE should make it worth it! And it's quite mix and match.... Ann, Caitlin's Mom (with a whole family of blue-eyed Irish folks in Solumbra!)