Author Topic: Photosensitivity  (Read 1928 times)

tracyj

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Photosensitivity
« on: August 30, 2011, 06:53:21 PM »
Hi All,

I'm photosensitive due to the plaquenil I'm taking.  (At least at this stage that's what the Dr says is the cause).  If any of you have it how long does it take for your rash/dermatitis due to the sun to settle down and disappear?  Also   does anyone react to flourescent lights? 

Thanks

Tracy
Myasthenia gravis, Hashimotos, Fructose Malabsorption, Pernicious Anaemia, Atrophic Gastritis, Sjogren's, Vitiligo, Photosensitivity, Reynauds.  Meds:  Thryoxine, Somac, Plaquenil, B12 injections, Vit D, Calc, Yaz

Joe S.

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Re: Photosensitivity
« Reply #1 on: August 30, 2011, 07:08:25 PM »
Some of your photosensitivity could be from Sjogren's.
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waterbby100

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Re: Photosensitivity
« Reply #2 on: August 30, 2011, 07:25:58 PM »
Hi Tracy,

I have become photosensitive with plaquenil for me I get sunburned very easy which I have never done before. I wear sunscreen more now and it helps. I have heard of others having to wear long sleeves and hats in the summer. I do wear a hat when I am out for a long time but I just can't bring myself to wear long sleeves in the summer at least not yet.

I hope you find something that helps you.

Kimber

Nat

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Re: Photosensitivity
« Reply #3 on: August 30, 2011, 07:40:07 PM »
Here is some info from ScienceDaily: "Ultraviolet (UV) light damages skin by causing chemical bonds to from in the wrong places along the DNA molecules in our cells. Normally, other even smaller molecules, called photolyases, heal the damage. Photolyases work in a fraction of a second." (Ohio State University, 2010)

Photolyases need tryptophan in order to function. Tryptophan is an amino acid that is derived from Threonine. Threonine is found in high protein foods. If you are unable to break down dietary proteins, you would not be able to produce tryptophan to heal the DNA damage. Additionally, the junk DNA and protein from the damaged cells will cause an autoimmune flare, since the enzyme DNase 1 (pancreatic enzyme that breaks down dietary proteins and has been found lacking in autoimmune sufferers) is not present to remove the debris.

Sooki

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Re: Photosensitivity
« Reply #4 on: August 30, 2011, 08:09:34 PM »
I've been on plaquenil for a year now.  I have sun sensitivity for the first time this summer.  But the rash was biopsied and found to be lupus.  I'm very careful never to let sunlight touch my skin - hat, gloves, long sleeves, etc.  My rheumy said the sun reaction is systemic and makes the whole disease more active.  He also said the kind of rash caused by plaquenil looks quite different.  Plaquenil sometimes lessens sun reaction of my type.  In my case, I added Cellcept which is helping.
64 yo, Sjogren's, Lupus, Hashimoto's, fatigue, MGUS, peripheral neuropathy,
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tracyj

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Re: Photosensitivity
« Reply #5 on: August 30, 2011, 08:41:48 PM »
Thanks to everyone.   I've always been careful as I have the typical red hair and extremely fair skin complexion.    Hats, sunblock, long sleeved shirts etc.  But in a moment of absent mindedness I went for a quick walk, hat on sunscreen on my face, (can't remember if I put it on my neck)  but no bandana / scarf over my neck as well.  You guessed - I got a rash that began the next day and proceeded to get worse for the next few days.   I've still got it, but its slowly improving (neck is now covered, even indoors until it dissapears).   I must admit in the back of my mind I'm worried that it could be something like lupus, but I guess I'll wait and see.

Dr thinks its photosensitivity and told me that the reaction is proportional to time I've spent on plaquenil plus UV exposure duration.  He said I'm even going to have to be careful of some indoor lighting, ie halogen lights.

Oh goody  ;D
Myasthenia gravis, Hashimotos, Fructose Malabsorption, Pernicious Anaemia, Atrophic Gastritis, Sjogren's, Vitiligo, Photosensitivity, Reynauds.  Meds:  Thryoxine, Somac, Plaquenil, B12 injections, Vit D, Calc, Yaz

theosof

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Re: Photosensitivity
« Reply #6 on: August 30, 2011, 09:28:07 PM »
Hi- I'm photo sensitive as well. I get it on my forearms but this year I reacted especially bad, got it biopsied and like SOOKIE it is Lupus. The derm. said it is not surprising to have more than one autoimmune dz. What luck we have.

12lovehim

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Re: Photosensitivity
« Reply #7 on: August 30, 2011, 11:35:56 PM »
I wanted to comment about indoor lights.. Some Dr offices have crazy lighting.. My eyes swell and I get a rash.. and I start to swell in my joints too.. So we must be careful of the indoor lights as well.. Some people I know are reacting to computer screens and TV's..

Keri
Sjogrens Primary, SLE, Partial Complicated Seizure Disorder, (Fibro) ..  Low D & B, Systane, Pred, Plaq. Gaps Diet & Ret Army and Proud Mom and Nana..

waterbby100

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Re: Photosensitivity
« Reply #8 on: August 31, 2011, 07:25:40 AM »
I started to wonder about the difference in my quick and bad sunburn reaction and other rash reaction to the sun. Doing some research I found a really good article on Phototoxic and Photoallergetic reactions with pictures. Here is the link if anyone is interested in looking.
http://www.medicinenet.com/sun-sensitive_drugs_photosensitivity_to_drugs/article.htm

 I was also thinking about Nat's post and not being able to break down protiens as being a cause of alot of issues us Sjogren's sufferers have and was wondering if there is an enzyme that we could take to help. I have read that fresh pineapple has Bromelain that is supposed to help digest foods better. Any thoughts?

Kimber

A66eyroad

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Re: Photosensitivity
« Reply #9 on: August 31, 2011, 08:25:43 AM »
My first mother-in-law has discoid lupus (aka "skin lupus") and she gets horrible welts on any skin exposed to fluourscent lighting. She moved into a new home and ended up having have her kitchen lighting completely changed. She was in absolute misery! It took months for us to figure out what it was, and months more to clear up.

I get tiny itchy blisters under the skin between my fingers and on my arms when I'm in the sun for more than a couple of minutes, even if it's not my arms that're exposed.  I started getting this before my diagnosis, so I'm 99% sure it's not the Plaquenil.  I do get a hot rosy rash on my cheeks whenever I get sun on my face (baseball games, watching the grandkids swim) which I at first thought was a malar rash, but with help from my Sjoggie friend NewHorizons I've decided is rosacea.

My eyes are also very sun and bright light sensitive, though not as sensitive as my Sjoggie friend Cheryl.
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mshistory

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Re: Photosensitivity
« Reply #10 on: August 31, 2011, 08:49:07 AM »
I'm photosensitive to flurorescent lights (probably sun light too but I don't spend much time in the sun). But when I'm under bright fluorescent lights for too long (like at Wal-Mart) I actually start feeling sick....sore throat, nausea, dizziness, fatigue increases (which is hard to believe considering how bad it is), eyes burning, etc. It's like all of my SjS symptoms get worse. It usually takes several hours of getting away from those lights to start feeling better.

Sharyn
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Joe S.

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Re: Photosensitivity
« Reply #11 on: August 31, 2011, 01:04:32 PM »
That could be the frequency they are running at. A friend and I have discovered that the compact bulbs run at a variety of frequencies. The big tubes flash on and off 120 times per second. Some times selecting a bulb with a more natural color selection output (grow light or full spectrum) can help you feel better.
bkn C4 & C5, herniation's 7 n, 5 t, 4 l, Nerve Damage
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nanamaryj

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Re: Photosensitivity
« Reply #12 on: August 31, 2011, 07:11:52 PM »
I have been getting the sun sensitive rash for about 20 years.  It was my first symptom.  A biopsy said lupus.  My rhuemy said it can't be lupus, but that Sjogren's also causes the same rash.  I've only been on plaquenil for 6 years so I know 100% that is not what caused it.  I can't be out in the sun at all.  If I do have to then I cover up and use a high spf sunscreen.  It has actually decreased in severity since being on the plaquenil.  I also get sick when at Wal-Mart.  The lights there are so harsh.   My shopping trips are very limited because of that.

tracyj

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Re: Photosensitivity
« Reply #13 on: August 31, 2011, 09:54:46 PM »
Wow!  I love this group.  There is always someone who can help or relate!!!   Anyway I will just keep slathering on the sunscreen, hat long sleeved shirt and I've started wearing my lovely silk scarves around my neck.  (Why not turn the problem into a fashion statement I say!)   My best friend is off to Singapore today and is on a mission while there to travel the markets and find me some "fabulous" cotton scarves for summer!!  I could set some new fashion trends!!!

Tracy
Myasthenia gravis, Hashimotos, Fructose Malabsorption, Pernicious Anaemia, Atrophic Gastritis, Sjogren's, Vitiligo, Photosensitivity, Reynauds.  Meds:  Thryoxine, Somac, Plaquenil, B12 injections, Vit D, Calc, Yaz

Sooki

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Re: Photosensitivity
« Reply #14 on: September 01, 2011, 09:57:49 AM »
Foxglove gloves are my new fashion statement.
64 yo, Sjogren's, Lupus, Hashimoto's, fatigue, MGUS, peripheral neuropathy,
Plaquenil, CellCept, Synthroid,
D3, Ca/Mg, fish oil, ALA, DHEA, biotin, B-12, always GF, DF, S(oy)F, currently Paleo Autoimmune diet