Has your sun sensitivity gotten worse over the last few years?

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cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 6/17/2010 7:54 PM (GMT -7)   
Hi-
I was just wondering whether everyone is having worsening sun sensitivity. I wish I could say it was something about this year in particular but I had bad problems over the winter. I've been on plaquenil for about 4-5 years now and every year it seems to get worse. Is this your experience?
 
Thanks for any info. My eyes are getting bad with regard to light as well.
 
Love, Marji
Ills--Sjogrens-Lupus cond., AI polygland. dysfunction 2, hyper/hypopigment, scoliosis,kyphosis,stenosis, deg.,O.A.,spine surgeries, salivary/lymphectomies, NASH, COPD, RLS, UT/GI bleeds, hystero, brain/nerve damage,TB
Meds--INH,Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, HRT and Lidocaine patchs, Voltaren gel, Klonopin, Vicodin, Restasis, Albuterol, steroids


Butterflake
Forum Moderator


Date Joined Jun 2006
Total Posts : 1547
   Posted 6/21/2010 4:58 AM (GMT -7)   
Hi Marji. My heat intolerance seems to get worse each summer, but I think sun sensitivity is the same as always.
Love, Butterflake
Systemic Lupus ('05), depression, fibro, sjogrens, cns issues, diabetes, gerd, hypertension, colitis, stage 1 kidney disease. Cellcept and lots of other meds.  Donna 


nasalady
Veteran Member


Date Joined Sep 2009
Total Posts : 1176
   Posted 6/21/2010 8:09 AM (GMT -7)   
Hi Marji,

My intolerances to light and heat are both getting steadily worse.....we are in the process of moving to the coast just so I can be in a cooler, cloudier place.

(((((hugs)))))
JoAnn
Lyme Disease, Babesiosis, Ehrlichiosis, AIH, Hashimoto's, lupus, fibro, RA, celiac disease, asthma, psoriasis, Raynaud's, hypertension, osteopenia, sleep apnea, RLS, GERD, DDD, L3-4 and L4-5 radiculopathy -> severe lower back pain, cubital tunnel, tarsal tunnel, Doxycycline, Zithromax, Prednisone, Imuran, Plaquenil, Lyrica, Cymbalta, Levothyroxine, Atenolol, Cozaar, Zyrtec, Fosamax, Albuterol, Prilosec, CPAP

autoimmunediseasesgfliving.blogspot.com


cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 6/21/2010 6:39 PM (GMT -7)   
I'm just wondering if its a cumulative thing with the meds/disease. It seems to be that way with me. I can't tell if its the autoimmune or my liver. Hopefully its the normal progression of the autoimmune.
Love, Marji
Ills--Sjogrens-Lupus cond., AI polygland. dysfunction 2, hyper/hypopigment, scoliosis,kyphosis,stenosis, deg.,O.A.,spine surgeries, salivary/lymphectomies, NASH, COPD, RLS, UT/GI bleeds, hystero, brain/nerve damage,TB
Meds--INH,Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, HRT and Lidocaine patchs, Voltaren gel, Klonopin, Vicodin, Restasis, Albuterol, steroids


suetoo
Regular Member


Date Joined Jan 2006
Total Posts : 395
   Posted 6/23/2010 7:54 AM (GMT -7)   

Hi! Marji,

ME TOO!!! Yes, it has! Much worse, and my warning, even through the car windshield, is a horrible, nasty prickling feeling wherever the sun is touching. Last Friday, I had an accidental sun exposure, just over my forearms, when I was reading in the shade, and the sun moved and I didn't. For about a half an hour, and I came out of my book to find this horrible, red, raised, papular, hard bumped, red and hive HORRIBLE rash all over my arms. By Friday night I was in a horrible flare of systemic illness. Sat. morning I was so sick I had to take emergency prednisone, 40mg q 12, could barely walk, it scared me terribly because I was so overwhelmingly sick and rashed all over and ALL my joints ached and I barely made it to the bathroom without help, thank God for my husband. Took benadryl, too. And I live at a little lake, so being outside and swimming is my most favorite thing. Never again, and as my rheumy recently said.... I have quite the autoimmune illness. I am not at all heat intolerant, in fact, I have such a bone chilled neuro system chill most of the time, I am never too warm. But my eyes are way photophobic, too. I have actually had to wear my dark sunglasses when I am in stores with bright flourescent lights. I actually think some of the rash is going to leave a scar. And plaquenil can make it worse, I am told. I have patchy brown spots the dr. said was likely from that. And, just cropped out with a bunch of little red warts. Yep, rheumy said... warts. I looked at my legs and thought about getting a marker out to connect the dots...

hugs, suetoo


God knows, even if I don't....
CNS Lupus 2005, APS, Hashimoto's Thyroiditis
Meds: Plaquenil, Neurontin, Thyroid, meloxicam, Aspirin, Atenolol and Norvasc, Prednisone 5mg daily. Vit. B12 2400 mcgs, Vit D 1000U and  Ambien every night.


cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 6/24/2010 12:01 AM (GMT -7)   
Oh, Sue, I hope you are getting better. I have wooden blinds and it looks like I have plywood over my windows. I can't standa sliver of sunlight due to my eyes. I went out a little and got blackish/greyish freckled patches from my temples down the sides my face almost to my chin and my skin is pitting. I have porphyria bad, on top of the regular sun problems. I want to stop the plaquenil, I know it would clear up, but I got so so sick with horrible gi problems that I started back up. I gotta talk to my doc. This summer is awful and with the oil and pcb exposure in our aquafer, air rain, rivers, and land, this can cause sensitivity problems as well. I hope they get it fixed soon. And I hope its cloudy alot and that everyone can manage to stay sun free.
Love, Marji
Ills--Sjogrens-Lupus cond., AI polygland. dysfunction 2, hyper/hypopigment, scoliosis,kyphosis,stenosis, deg.,O.A.,spine surgeries, salivary/lymphectomies, NASH, COPD, RLS, UT/GI bleeds, hystero, brain/nerve damage,TB
Meds--INH,Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, HRT and Lidocaine patchs, Voltaren gel, Klonopin, Vicodin, Restasis, Albuterol, steroids


cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 6/27/2010 11:25 PM (GMT -7)   
Possi-
I'm sorry you are having such bad trouble. I wonder if  something is wrong this year. It is so bad and we get horrible thunderstorms every day and night. The heat is so badand sun unbearable. And you are right,  it makes pain so much worse.
 
I get really really nauseaus from sunlight and sometimes get really bad nausea and unwell feeling. I'm so sick of nausea.
 
 
Love, Marji
Ills--Sjogrens-Lupus cond., AI polygland. dysfunction 2, hyper/hypopigment, scoliosis,kyphosis,stenosis, deg.,O.A.,spine surgeries, salivary/lymphectomies, NASH, COPD, RLS, UT/GI bleeds, hystero, brain/nerve damage,TB
Meds--INH,Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, HRT and Lidocaine patchs, Voltaren gel, Klonopin, Vicodin, Restasis, Albuterol, steroids


momto3
Veteran Member


Date Joined Nov 2006
Total Posts : 1331
   Posted 6/29/2010 10:15 AM (GMT -7)   
Hi everyone, I'm from the RA board, and I take MTX and have for several years without issue.  For the last couple of years and this one especially, I've been unable to tolerate the heat/sun. To the point of rashes/hives. I went to my rheumy last week and told him and he said to stay out of the sun during peak hours, stay covered, the usual. I'm wondering how many take MTX? Yesterday, my son took me to run errands and we didn't arrive back home until afternoon and here the sun always shines in CO..Today I'm having horrid joint pain, fatigue, headache and I just generally feel unwell. I'm wondering how do you distinguish the sensitivity/aftermath between Lupus and possibly medications if you take them and they can cause sun sensitivity. I'm beginning to wonder if I want to stay on the MTX. During the winters, I'm fearful of the cold for causing joint pain, and now I'm fearful of the heat shakehead
 
 

cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 6/29/2010 5:10 PM (GMT -7)   
I don't know, I tried to stop taking mine and got really really sick and in pain, so the sun sensitivity, even with hives, burns, nausea and joint pain was much less painful and awful than not having my meds. BTW. I definitely do not recommend what I did, I did it per a doctor's care.
Love, Marji
Ills--Sjogrens-Lupus cond., AI polygland. dysfunction 2, hyper/hypopigment, scoliosis,kyphosis,stenosis, deg.,O.A.,spine surgeries, salivary/lymphectomies, NASH, COPD, RLS, UT/GI bleeds, hystero, brain/nerve damage,TB
Meds--INH,Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, HRT and Lidocaine patchs, Voltaren gel, Klonopin, Vicodin, Restasis, Albuterol, steroids


suetoo
Regular Member


Date Joined Jan 2006
Total Posts : 395
   Posted 6/30/2010 6:37 AM (GMT -7)   

Hi! Everyone,

While I know many of our meds make sun exposure worse, my neuro explained that our underlying autoimmune disease is the cause, (and as many of us know, you can't seem to have one without the other.....sun rash/lupus ?), where our antigen/antibody reactions are so screwed up, we hyperreact to many triggers. I wouldn't want to blame the mtx. unfairly, and certainly not try and wean off it without your drs. ok. My attempts to do with a 2.5mg dose of prednisone haven't gone well, and I am trying to work up my courage to start the cellcept as my dr. suggested. Prednisone is the devil I know compared to the devil I don't, and I used to live for hot summer days sitting in  the full sun. Not anymore, the last inadvertent  brief exposure almost put me in the hospital. The level of sick exhaustion plus joint pain in EVERY joint this time, plus swelling up like a sausage, plus sick dizziness and ringing in my ear, plus a horrible itching all over body rash, and my eyes in slits, aint, never again, worth it. And, even though I have tinted windows in my car, even the sun coming through the windshield is enough to start my warning prickle, and I always have a jacket or throw to cover my arms rt. down to the tops of my hands. And I vote with Marji,

hugs, suetoo


God knows, even if I don't....
CNS Lupus 2005, APS, Hashimoto's Thyroiditis
Meds: Plaquenil, Neurontin, Thyroid, meloxicam, Aspirin, Atenolol and Norvasc, Prednisone 5mg daily. Vit. B12 2400 mcgs, Vit D 1000U and  Ambien every night.


Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7019
   Posted 6/30/2010 7:04 AM (GMT -7)   
Suetoo,

I know all these meds work differently for each of us, for instance Imuran did nothing for me but helps others greatly. Anyway, Cellcept was the wonder drug for me that seems to have headed me into a remission or 'quite spell' as my dr calls it.

SO go ahead and try Cellcept, other than some thinning hair that grew back as soon as I came off Cellcept, there were no adverse effects for me.
Lynnwood, Lupus & Sjogren's Moderator
"Life is far too important to be taken seriously" - Oscar Wilde


suetoo
Regular Member


Date Joined Jan 2006
Total Posts : 395
   Posted 6/30/2010 7:20 AM (GMT -7)   

Hi! Lynnwood,

Thanks muchly, everyone's posts here are really comforting to me. I worked my last day yesterday, and as soon as I have alittle bit of time to adjust to not having an 'outside' job tongue and rest abit, I am going to call my rheumy for the cellcept script.

suetoo


God knows, even if I don't....
CNS Lupus 2005, APS, Hashimoto's Thyroiditis
Meds: Plaquenil, Neurontin, Thyroid, meloxicam, Aspirin, Atenolol and Norvasc, Prednisone 5mg daily. Vit. B12 2400 mcgs, Vit D 1000U and  Ambien every night.


cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 6/30/2010 1:21 PM (GMT -7)   
Does cellcept work for UC type problems? My mom deesn't have UC but microscopic colitis and MTX has been the only thing that has worked, she got really sick on Imuran and had to go off, and entocort causd her to get bad osteoporosis type disease and her rod i her lumber spine rotted out. So steroids a no, but Itold her I would try tofind out about other stuff. Cellcept seems easier on the liver, we haveproblems in our family with them.
Love, Marji
Ills--Sjogrens-Lupus cond., AI polygland. dysfunction 2, hyper/hypopigment, scoliosis,kyphosis,stenosis, deg.,O.A.,spine surgeries, salivary/lymphectomies, NASH, COPD, RLS, UT/GI bleeds, hystero, brain/nerve damage,TB
Meds--INH,Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, HRT and Lidocaine patchs, Voltaren gel, Klonopin, Vicodin, Restasis, Albuterol, steroids

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