Author Topic: Sudden onset of multiple new symptoms - UV radiation to blame?  (Read 237 times)

veleha

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Hi all!

I have had terrible time for the past month of so. I have had Primary Sjogrens approximately 15 or even 20 years (diagnosis 5 years ago) and my only symptoms this far have been dry mouth and dry eyes. Now I have rapidly and suddenly started experience also dry skin, very dry hair, dry nose and irritated, dry throat, which makes swallowing hard and possible dry vagina also. And I feel also that my ability to perspire has decreasedd, not sure, but think so, I have always perspired quite little. All this started about 5 weeks ago and the new symptoms have emerged very fast in contrary to my earlier symptoms which developed in the course of many years. What is happening to me and why? Is it typical for Sjs to develop new sicca symptoms so rapidly and suddenly? Could my trip to Italy at the end of May be to blame? I normally avoid sun carefully and use 50 sunblock, hats, glasses etc. But in Italy UV index could have reached 6-8 during that time and one day I was out in the sun during 10-14 am in hard sunlight (was protected with sunscreen but still). Has anyone else experienced such a rapid onset of new sicca symptoms due to sunlight or other stress event? Could UV radiation have triggered so many sudden new symptoms or is something else going on with the course of my disease?

veleha

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Re: Sudden onset of multiple new symptoms - UV radiation to blame?
« Reply #1 on: July 10, 2018, 02:34:01 AM »
Wanted to add still, that never before I haven't had any problems with the sun, not even in Buenos Aires, where I got severely sunburned. But that was 5 years ago and I wonder also if age or hormone related things (like decreasing estrogen - I am now 40 years old) could increase the effect of UV radiation in our bodies. I also had severe influenza and sinus infection in March, but had no increase of the Sjs symptoms then so I think it's unlikely they would appear after three months. I am connecting my new symptoms to Italy trip, because they emerged a week after the trip one by one. First it was dry skin, then dry hair, then dry throat and so on. My own hypothesis is that stronger than usual UV radiation (I live in Northern Europe where UV index rarely goes over 6 even in summer) has triggered new systemic sicca symptoms somehow. Also my mouth and eyes have now became drier than ever before. But would like to understand if something similar has happened to others. And could it also be possible that this is only a flare up of the symptoms I already have had but in much milder and unnoticeable form or are these more likely completely new symptoms that I now have to learn to live with. I went to blood tests and contacted my rheumy but the blood test did not show any increased activity in the disease (e.g. the ESR was even lower than usual) - this also confuses me, if new symptoms are rapidly emerging, should the disease also show more activity in blood tests? Or is there another meters for activity too?

Joe S.

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Re: Sudden onset of multiple new symptoms - UV radiation to blame?
« Reply #2 on: July 10, 2018, 03:15:32 AM »
You have joined the children of the night. Yes, UV and IR radiation can be a problem. I usually confuse people by saying that, "I am allergic to sun light". I live in a temperature range of 72F to 73F.

I wear SPF 50 clothing. I try not to be out side when it is sunny. I where Blue Blocking sun glasses and SPF 50 big brim hats. I have a black out towel that I can put over myself when riding in the car to cut sun exposure. I have a sun screen over most of my side window and tinting on other windows with the exception of the windshield of the car. If I use the blanket I direct the Air conditioning under it to help keep my cool.

Why? Sjogren's affects any gland that produces a fluid. That includes your sweat glands. When they go out on you the room temperature could be 60F and you are drenched. Then when it is 100F not a cooling drop of sweat.

If you have to be out in the sun, stay covered up and hydrated. Try to limit your time in the sun. I have terminated all of my yard work and gardening activities. I have quit using my BBQ. I have given up riding motor cycle and scuba diving.

You can now consider yourself another child of the night.
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Skylar

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Re: Sudden onset of multiple new symptoms - UV radiation to blame?
« Reply #3 on: July 10, 2018, 05:47:50 AM »
I usually confuse people by saying that, "I am allergic to sun light".
Joe, don't tell people you are allergic to sun light. There is a specific disease called Polymorphic light eruption (or polymorphous light eruption PLE) which may be an autoimmune disease. When you have PLE, you develop a rash in response to sunlight and some artificial light.

The joy of having an autoimmune disease is it's unpredictability. You maybe having a flare and when things settle down you might be where you were before the flare - or slightly worse or not improved at all.  It could have been too much sun, but I suspect it could have been pushing yourself too hard during your vacation trying to see and do everything while you are there. Menopause can also cause these problems in people who don't have Autoimmune Diseases.  Hopefully it's a flare and will settle down soon.

In the meantime there are things you can do to help with "dry skin, very dry hair, dry nose and irritated, dry throat, which makes swallowing hard and possible dry vagina also." You can ask about solutions on this forum. Here are some of my suggestions:

For dry skin and hair, take a shower every few days, instead of daily using warm, not hot water and use the most gentle detergent for both your hair and body. Use a loofah to defoliate your skin then pat your skin gently after the shower and apply a light oil if needed to your skin and a rich emollient conditioner to your hair. In between if you sweat you can take a water only shower to rinse off sweat. You can spot wash any part of your body that needs to be cleaned between showers.

For dry nose and irritated dry throat - there are products you can apply to your dry nose - I forget the name of the product that I use sometimes - your rheumatologist should know the name of what is available where you live. Sipping water  through the day or chewing gum or keeping a hard candy in your mouth will help with a throat that is due to dryness. Using a humidifier helps. Sipping water through a meal, sometimes after each bit helps. Eat foods that are moist and easy to swallow - soup and stews rather than dry crackers.

For dry vagina, speak to your gynecologist - there are products that can help some of which are prescription.

Gentle hugs and hope you feel better soon.




araminta

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Re: Sudden onset of multiple new symptoms - UV radiation to blame?
« Reply #4 on: July 10, 2018, 06:20:46 AM »
I tend to agree with  Skylar that it could be the stress of being on holiday.   I know that since my symptoms started I have always come back from holiday feeling somewhat worse than when I went away, often with extra symptoms like rash.   I think it's because I try to keep up with my husband on holiday, I don't want to spoil things for him, so we do much more walking and other activities than I normally do.

This could well be a temporary flare, I hope you feel better soon.
Dry eyes (MGD),dry nose, dry mouth, labyrinthitis, rashes, dry skin, mouth ulcers, constant but fluctuating fatigue.  Blood tests and Schirmers negative and no Sjogrens dx yet.   Flax oil, multivitamins,  saline nasal spray, Hylo forte, Lacrilube, organic castor oil for eyes.

Carolina

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Re: Sudden onset of multiple new symptoms - UV radiation to blame?
« Reply #5 on: July 10, 2018, 08:29:59 AM »
Travel is extremely stressful for me.

And I have had times when sunlight on my skin 'hurts'!  And I have always been an addict to sunlight until the last ten years.  I tan easily, seldom burn, and yet suddenly sun on my skin hurts!

Now it isn't a problem since I am disabled and spend very little time outside.

We are just back from a trip to the midwest to visit my husband's family and friends.  This trip was so exhausting and I went into flare mode.  I had forgotten to take my extra Medrol (like prednisone) so had no way to interrupt the flare.

Those of us with Immune Disorders can have sudden onset of symptoms, I have found.  My dryness became much worse in the past 6 months, but seems to have calmed a bit.  OR I may have adjusted to 'the new normal'.  It is always hard to tell.

It is always something, and then it's something else.

Hugs,  Elaine
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Polly

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Re: Sudden onset of multiple new symptoms - UV radiation to blame?
« Reply #6 on: July 10, 2018, 11:48:13 AM »
I disagree with the idea that UV exposure causes flares. I live at 8750 feet elevation, the UV is very dangerous up here. For years, I spent a lot of time every day outdoors and didn't have a flare. In March, my favorite dog got sick (began to die) and the stress of that sent me into a flare that still continues (she died in April). The dry mouth started in March, the dry skin just within the past two weeks. I hardly ever go out now although I am trying to go out once a day to get enough strength back to do normal things. I am mostly confined to bed. When I go out, I am fully protected as I can burn in 5 minutes.

But everyone is different and for some, a little sunburn or too much sun could cause enough stress to trigger a flare. For me, too much sun always put me to sleep (and burned me) but never had any lasting effects. Stress is a strange thing, too.

Sharon

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Re: Sudden onset of multiple new symptoms - UV radiation to blame?
« Reply #7 on: July 10, 2018, 12:31:08 PM »
Your worsening of symptoms could be due to many other things as well.
Are you in menopause?
Have you begun to take any new meds which could be drying?
Have you had a change in diet?
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veleha

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Re: Sudden onset of multiple new symptoms - UV radiation to blame?
« Reply #8 on: July 10, 2018, 12:59:46 PM »
Hi again and thank you for your kind support and experiences.

I have also had very stressful time during the spring, but have had periods of strong emotional stress before in my life, without Sjs reacting. The trip itself was not overly stressful since we stayed in one location and I haven't had any problems with travel before.

I am not on any medication for Sjogrens nor have changed any diets or treatments to my skin and hair. I am not in menopause, but I believe that my hormones are slowly declining so perimenopause is possible. I still have regular periods. I have been examining relationship between estrogen and Sjs a little and wonder if relative estrogen deficiency I probably have could have made me more sensitive to get new symptoms due to UV radiation or other factors. Last time I was in the sunny holiday (three years ago) I was pregnant (very high estrogen) and had no problems afterwards. I have also noticed that when estrogen is low, my dry mouth is worse and when it's high, it's better.

I know hormonal imbalances can also cause dry skin/hair or make the Sjs symptoms worse, but I wonder if the effects would be this severe and continuos. My hair turned very dry basically overnight and I haven't done anything differently than before. Just a month ago I had thick, wavy and shiny hair like I have had all my life and now it's dry and lifeless (no thinning yet). I have always had quite dry and little atopic skin, but now the skin in my face feels very tight and dry no matter how many layers of cream I add on it. I have read that Sjs can have effect on the sebacious and sweat glands in skin (located especially on face and scalp) and I wonder if this is now the case with me. I don't know if it's a logical scenario to think that the UV radiation could have first caused inflammation in skin and then activated the immune system against skin structures (sweat and sebacious glands). Of course I have also now developed dry throat and nose somehow which are not directly related to skin I guess. Would like to hear if anyone else has developed dry skin after sun exposure and if there has been any improvement in skin and hair issues. I have read that most Sjs flares are more linked to existent joint pain and fatigue, not so much the totally new dryness symptoms emerging, but I am not sure.

quietdynamics

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Re: Sudden onset of multiple new symptoms - UV radiation to blame?
« Reply #9 on: July 10, 2018, 03:49:34 PM »

"Ultraviolet (UV) radiation emitted from the sun and other light sources (such as some fluorescent lights) can alter immune function and lead to an autoimmune response in the body and skin. In response to the sun, Sjögren's patients can experience skin rashes, ocular sensitivity, pain, and disease flares." info.sjogrens.org

Rheum who treats me asked me to give him notice if I planned a visit close to regions near equator. He would then increase plaquinel. "https://www.hopkinslupus.org › ... › Lupus Medications and Treatment Options
Hydroxychloroquine (Plaquenil),  ... Anti-malarials can protect against UV light and sometimes even improve skin ..."

Each of us is different a talk with your Dr. would be of value.
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Linda196

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Re: Sudden onset of multiple new symptoms - UV radiation to blame?
« Reply #10 on: July 11, 2018, 06:05:54 AM »
Quietdynamics, your quote speaks directly to the fact that each of us is different, because one of the noted side effects of hydroxychloroquin is increased photo sensitivity and the possibility of severe sunburn! It basically alters the immune response to UV light, either way, and I'm lucky in that, after a lifelong of burning easily and frequent bouts of sun stroke, I've been much more tolerant of the sun since starting on Plaquenil! I'm still very careful about exposure, and do occasionally get a rash from direct prolonged exposure, but other than that, it's been a good change.

My problem with the sun and heat is, since being on Prednisone almost continuously for 14 years, I no longer have the adrenal "fight or flight " response to stress while I'm taking my daily dose,and heat is a strong physical stressor. As a result, on the almost rare times that we experience a true heat wave (the joy of the Great White North) I have to stress dose my Prednisone. It usually only happens a few days in August, but this year has been exceptional for extreme weather, and I've had to do so twice already this summer.

I also find stress to be my primary trigger for flares, and travel , even enjoyable travel, can be stressful. We've totally changed the way we approach vacation trips, less micromanagement, more spontaneity, and shorter days trying to fit fewer things in, and longer overall time, and we managed a 2 week road trip last year without my falling prey to the evil flare.
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irish

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Re: Sudden onset of multiple new symptoms - UV radiation to blame?
« Reply #11 on: July 11, 2018, 07:35:52 PM »
I have been sensitive to the sun for more years than I can remember. I have to add that I have had dry mouth, muscle and joint pain, carpal and ulnar nerve problems, Reflux, gastritis, diarrhea lasting months, vaginal dryness, red hot joints, bladder involvement issues and other things since the mid to late 60s and was not diagnosed with Sjogrens till 2003.

For some reason I took to wearing light colored long sleeved shirts, caps, sun tan lotion and a face mask when I gardened back in the 1980s. When in the sun I would have flushed arms that would burn as in neuropathy so I just figured I had better protect myself. I also had a ton of Upper respiratory infections so figured the mask would prevent more infections. As a nurse who had taken care of lupus patient over the years I was well aware of the things the sun could do. I had always felt that I had autoimmune issues but it took about 40 years of doctoring and arguing with doctors at times to get them to finally take me seriously.

I am like others on here who have flares or feel really ill after some innocent fun. Bad stress makes e take too my bed and so does good stress. My fatigue level has been so bad for so many years and just getting up in the morning is stressful for me. Takes me until kate afternoon to feel like I am going to live many days. I have to make sure I take my Mestinon for my myasthenia muscle weakness. I reallyy have to pick and choose the things I expend any energy on. I have been on Plaquenil for many years and can't say that this has changed anything.

I am like Linda and have been on Prednisone about 14 years also. We keep trying to taper me down some and some of my doctors just hate that I am on it so long. I don't do well when we try to taper me off. I am on 10 mgm one day abd 7 mgm another day now and the goal is to get me to 10 mgm every other day as I had been before which is my neurologists protocol for her myasthenia patients. She wants us to have somes protection in case we go into respiratory failure which can happen to us.

Hope you can get things sorted out. Some of it is just learning to live with what you body can take. We all have to make adjustments with chronic disease. Just changes our schedule and we can learn to go with the flow as time goes by. Good luck. irish

veleha

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Re: Sudden onset of multiple new symptoms - UV radiation to blame?
« Reply #12 on: July 13, 2018, 01:46:15 PM »
Thanks for everyone for further answers and support again.

I have tried to figure out what's happening to my body. Some days my skin feels an inch better, but on the next day it's bad again. I have tried not to over-moisturize it, because now I think it's not only dry, but irritated because of all the creams I have added every day plus sunscreen. I feel that the skin on my whole body is irritated and overly sensitive all the time. I have a sense that it feels somehow rough or more 'matte' like there's no oils or sebum on it and I am afraid this will also affect to my hair growth since my hair is also dry. I don't feel like going to swimming or hiking or being outdoors at all.

I am also very worried about the possible hypohidrosis I may have developed due to these new symptoms. If I am not perspiring enough, am I in danger of over-heating if I exercise too much or go to a hot bath? I feel that hot air makes my hands feel odd - I do not know if that because of the swelling, because my hands don't cool anymore or what's going on.

I am positive that nose and throat are drying too. The dry mouth alone has never gave me this kind of symptoms, that it's hard to sing, speak or breathe deeply. I am feeling very depressed, it's hard to adjust myself to these rapidly overcoming new symptoms after having such a mild disease so long. It's also very hard to accept that if I haven't going to that trip, I may have never encountered this new state of the disease - at least not in many years. 

cccourt1942

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Re: Sudden onset of multiple new symptoms - UV radiation to blame?
« Reply #13 on: July 14, 2018, 11:42:59 AM »
Veleha;  you start with connecting sun to your discomforts apparently related to SjS---and after several replies to comments you mention you are on no medications for SjS.  I presume you have been dxed.  I am curious as to why you aren't on meds for oral cavity dryness and/or dry eyes.  During menopause I "developed" extreme aversion to loud sounds and bright (actually--eventually> ANY) light.  This lasted over a decade.  It took about 2 years of  SjS medications for me to realize I was listening to music again, could walk to my mailbox without sunglasses, etc.  I didn't know it was gradual.  We know it was.  By another year, I could forget my sunglasses w'out turning around to get them.  And have Bluetooth speakers for all music devices...with LOUD music once again.  It's wonderful.  So??  Check with your physician re: medication for your SjS symptoms.  (my take at least)

Enjoy your future travels!
ccc
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