1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
New Exercise Study Brings Both Illumination and Questions
Simon McGrath looks at new objective evidence of abnormal response to exercise in ME/CFS patients, and the questions that researchers are still trying to answer ...
Discuss the article on the Forums.

Anyone Else get ill after exposure to sunlight - not just the heat

Discussion in 'Hypersensitivity and Intolerance' started by helsbells, Apr 7, 2010.

  1. helsbells

    helsbells Senior Member

    Messages:
    297
    Likes:
    8
    UK
    I am olive skinned and also am used to being very carefree regarding my exp. to sunlight. The one thing i could always do, even with profound fatigue, was sit in a chair in the sun. It wasn't much LOL but it was something. Now I shake my fist at the cosmos wondering what it may dream of next :)
  2. helsbells

    helsbells Senior Member

    Messages:
    297
    Likes:
    8
    UK
    I know, I know it is going to be that isn't it! That would suck on so many levels I prefer to delude myself......What is the LC bit the last bit is fatty acids.
  3. helsbells

    helsbells Senior Member

    Messages:
    297
    Likes:
    8
    UK
    Just to say a big thank-you to everyone who has taken the time to respond so far, I will be off-line until the weekend now as I have some medic appointments will be back online by Sunday.
    Many Thanks and kind Regards
    helsbells
  4. faith.hope.love

    faith.hope.love Senior Member

    Messages:
    118
    Likes:
    1
    I'm sorry I missed your reply! I always forget to check my posts. I used to get a shingles flare every time I was in the sun for too long, but not so much now that I'm taking medication for it. (Cimetidine and valacyclovir.) Shingles causes the worse symptoms of any other illness I've had, by far. It's very painful and causes the worst fatigue. I still get a fever, malaise, and canker sores if I get a sunburn. I've read that the inflammatory response to the sunburn can cause that in hypersensitive immune systems. I've found that as long as I don't tan long enough to burn, I'm fine. I try to take extra antivirals whenever I go tanning. I have a nice bronze color right now, and no shingles. I SHOULD probably avoid it all together (not only because I'm risking a flare, but risking skin cancer as well!), but I'm slightly vain in that I don't want to be pale all year long. :) I'm sure once I get too sick to care what I look like, I'll stop tanning! (That's horrible, I know.)
  5. Mark

    Mark Acting CEO

    Messages:
    4,503
    Likes:
    1,925
    Sofa, UK
    A very interesting question raised here, initial exposure to extreme sunlight may well have been a sgnificant factor to me. Wish I had time to discuss this more but I'm afraid I have too much on my agenda at the moment. Just the one thought, that extreme 'over-sensitivity' to all kinds of things is clearly a strong feature for many of us, and different frequencies of light (radiation) are very powerful frontiers for science to look at. I think there will be a whole range of reactions, from those made better my sunlight to those made worse. It is not a simple, clear-cut, picture, very far from it. But I do think that light therapy might in the future be very important as a treatment. For example, I've posted elsewhere about Far Infrared Saunas, which are claimed to aid the breakdown and release of toxins held in the body, and I certainly did get very positive results myself when trying that. Even though most of the time I do tend to stay indoors and keep the light radiation to a minimum.

    One conclusion I'm focused on at the moment is that each of us has different and changing pictures of what is helpful and unhelpful to us, and that the apparently contradictory nature of that is a severe confounding factor for science. At the moment, I'm focusing on constantly listening to my body, monitoring my reactions to different stimuli, and constantly trusting my instinct and trusting what works. For example, that means that even though there are things I know I'm sensitive to and have avoided for a very long time, sometimes I do allow myself to (for example) eat bread, or eggs, in small quantities; and even when I do get a negative reaction to, say, clothes or food, I sometimes gently push myself if I'm feeling confident, to allow myself to stay in contact with the thing that's making me feel worse, as far as I can bear to. I suspect that, in this way, one can begin to retrain one's sensitivities somewhat. But it is all about listening to your body, trusting it, blocking out all those voices that have contradicted your own knowledge of your condition, and learning to trust yourself and your instincts, being aware of all the choices you do have. This approach may not be effective for all of us, but I think it is the way forward for many. We need to avoid the triggers that set us off badly, but then we also need to gently expose ourselves to those triggers as well, when we are able to, to avoid getting trapped into vicious circles where the sensitivity actually increases. In mathematical terms: fuzzy logic. And by the way, all of the above is quite consistent with the XMRV findings as well, XMRV recently stated to increase sensitivities but also, there will have to be ways (including natural healing ways) of coping with that and self-treating. Summary guidance: trust your body's instincts, block out the negative arguments against those instincts that you've had from doctors and others with more dogmatic views, and trust yourself; seek alternative treatments, follow what works for you rather than what you are expected to think and do, and keep on exploring what works for you with an open mind. And don't give up! :Retro smile:

    PS: was that reading or Reading I wonder? Hmm...I got my sunlight overdose in the latter...just a long shot but shout me if that makes sense to anyone...just ignore if you don't have a clue what I'm driving at there.
  6. rebecca1995

    rebecca1995 Apple, anyone?

    Messages:
    359
    Likes:
    20
    Northeastern US
    Direct sunlight, especially on my head, brings on symptoms of fatigue, light-headedness, worse cognitive confusion/disorientation, and pre-syncope. I've never been able to figure out why. Heat does the same thing to me, but that makes more sense.

    I used to wear a hat in the sun. Of course, since I became homebound and and sequestered from daylight, I have one less thing to worry about. :D So thoughtful of the disease to look out for us!
  7. parvofighter

    parvofighter Senior Member

    Messages:
    436
    Likes:
    99
    Canada
    ORGAN DAMAGE in sun sensitive auto-immune and viral conditions: PART 1

    First of all, thank you to helsbells for a fabulous thread. This is a really important topic in ME/CFS - thank you for bringing it up!

    Risk of Organ damage from sun exposure in patients with persistent viral infections and/or auto-immune conditions

    I would like to express my dismay at a recurring theme from a minority of posters that routinely and disdainfully trivializes ME/CFS symptoms, and encourages patients to ignore and "push through" their symptoms in a variety of contexts. We are SO close to research being translated into better biological treatments.

    PLEASE dont jeopardize your health and potentially cause permanent organ damage, by ignoring your symptoms particularly such potentially serious symptoms as sun intolerance!

    Reckless Endangerment and Doublespeak
    In the case of sun intolerance, there can be no ambiguity. No gently manipulative exhortations to "suck it in". No Zen, and the art of letting go. This is dangerous medical advice. Period. The physical health consequences of sun intolerance can be dire. And these thinly veiled recommendations from routine offenders under the guise of manipulative CBT - that we should ignore our ME/CFS symptoms - have the potential to do significant harm to patients on this forum.

    At what point does tolerance for diverse viewpoints on this forum become a medicolegal - and ethical - quagmire? Who will speak up when the health of ME/CFS patients here is in jeopardy from habitual reckless endangerment by the usual suspects? Sun intolerance is my last straw.

    Allow me in the next few posts to share some of the science on the severe risk from sun exposure, of inflammatory cascades and organ damage in patients with persistent viral infections and/or auto-immune conditions, and sun intolerance. And then please tell me how far our tolerance to manipulation of our patients should go.
    Is this, or is it not a moderated forum? Is this a forum about ME/CFS? Or is it a forum about CBT and GET - and a free-for-all "practice ground" for would-be practitioners who enjoy actively and dangerously manipulating seriously ill patients with posts infused with noxious CBT techniques?

    The connections between persistent viral infections (as in ME/CFS); lupus; and sun intolerance
    In the following posts, I will present the tip of the iceberg of evidence to show the potential for dangerous inflammation, cancers, and organ damage from sun intolerance.

    The gist of my message is this:

    There is considerable research that many of the opportunistic infections associated with ME/CFS (eg. Epstein-Barr, Parvovirus B19 (PVB19), Cytomegalovirus etc.) are associated with Lupus. Epstein-Barr infection and Lupus are both associated with sun intolerance. Lupus and persistent PVB19 are often mistaken for each other, they share so many similarities, and a foundation that is believed to centre on molecular mimicry. And there is new evidence (Mayo Clinic) that persistent Epstein-Barr virus infection can lead to the development of lupus. And lupus itself has some very very nasty complications from intemperate sun exposure. In other words, there are scientific interconnections which lead to a very reasonable hypothesis that if you have ME/CFS and have sun intolerance, you should listen to it! As you will see in the following posts, there are too many connections between these factors to ignore your sun intolerance. You face a very real risk of inflammatory cascades and even organ damage. If your ME/CFS symptoms get worse in the sun, LISTEN TO YOUR SYMPTOMS! DONT PUSH THROUGH THEM, as both of the above posters intimate you should.

    Here are some highlights:

    1. Sunlight intolerance is a known phenomenon in certain auto-immune and persistent viral conditions.
    2. Injudicious sun exposure in these individuals can lead to an inflammatory cascade and organ damage
    3. Certain medications can also cause sun intolerance with serious side-effects.
    4. There is hope on the horizon (eg. look at faith.hope.love and the impact of valganclovir on her sun intolerance).
    5. DO NOT IGNORE OR "PUSH THROUGH" YOUR SYMPTOMS! If exposure to sun makes you ill, speak with your doctor!
    I will not take part in a forum that does not seriously consider the repercussions of a CBT free-for-all on this patient population. That does NOT mean that discussion of CBT/GET should be off-limits. But CBT regularly PRACTICED on this forum, with constant veiled exhortations by regular offenders, for patients to "suck it in" and ignore dangerous symptoms? Come on.

    Maybe it's time for Parvo to go play with George.
  8. parvofighter

    parvofighter Senior Member

    Messages:
    436
    Likes:
    99
    Canada
    ORGAN DAMAGE in sun sensitive auto-immune and viral conditions: PART 2

    Fact 1: Lupus and Persistent Parvovirus B19 are often mistaken for each other
    There is abundant evidence in the scientific research of crossovers between auto-immune and viral conditions. Lupus and persistent PVB19 are known to be frequently mistaken for each other, so there is a chance that PVB19 patients are actually Lupus patients or vice versa. Lupus and persistent PVB19 can both present with arthritis, vasculitis, Raynauds phenomenon, kidney involvement the list goes on. Further, persistent PVB19 is one of the known opportunistic infections associated with ME/CFS. This underscores the need for sensitive blood AND tissue diagnostics, including immunohistochemistry and PCR, and a competent differential diagnosis. And it underscores the need to take your viral and sun-sensitivity symptoms very seriously indeed. A few examples from the literature:


    Acute viral infections in patients with systemic lupus erythematosus: description of 23 cases and review of the literature.

    The most common viral infections in patients with SLE are parvovirus B19 (predominantly mimicking SLE presentation) and CMV (predominantly presenting in severely immunosuppressed patients). CMV infection may mimic a lupus flare or present with specific organ involvement such as gastrointestinal bleeding or pulmonary infiltrates. Other herpesviruses are common in immunosuppressed SLE patients and may produce a wide range of manifestations.
    Human parvovirus B19 infection and autoimmunity.
    From: http://www.ncbi.nlm.nih.gov/pubmed/18700174
    Lunardi C, Tinazzi E, Bason C, Dolcino M, Corrocher R, Puccetti A.
    Autoimmun Rev. 2008 Dec;8(2):116-20.

    Since persistent viral infection is responsible for an autoimmune response and clinical symptoms can mimic autoimmune inflammatory disorders, parvovirus B19 is the object of intense efforts to clarify whether it is also able to trigger autoimmune diseases. Indeed the virus has been implicated as the causative or the precipitating agent of several autoimmune disorders including rheumatoid arthritis, systemic lupus, antiphospholipid syndrome, systemic sclerosis and vasculitides. Molecular mimicry between host and viral proteins seems to be the main mechanism involved in the induction of autoimmunity These new data sustain the role played by molecular mimicry in the induction of cross-reactive (auto)antibodies by parvovirus B19 infection.
    Parvovirus B19 infection and systemic lupus erythematosus: Activation of an aberrant pathway?
    Parvovirus B19 infection has been associated with a variety of rheumatic manifestations/diseases, mainly rheumatoid arthritis, vasculitis and systemic lupus erythematosus (SLE). B19 infection may simulate both clinical and laboratory features of SLE, presenting either as a potential first time diagnosis of SLE or as an exacerbation of previously established disease. The similarities in both clinical and serological features of parvovirus infection and SLE at presentation may hinder the differential diagnosis between these two conditions This review describes basic features of parvovirus B19 structure and pathogenicity and expands on the parvo-associated auto-immune manifestations particularly in relation to SLE-mimicking or SLE-triggering reported cases.
    Emerging lupus-like manifestations in acute parvovirus B19 infection.
    From: http://www.ncbi.nlm.nih.gov/pubmed/17622480
    Sugimoto T, Tsuda A, Uzu T, Kashiwagi A.
    Clin Rheumatol. 2008 Jan;27(1):119-20. Epub 2007 Jul 11.

    We encountered an adult patient with acute parvovirus B19 infection who presented with transient lupus-like symptoms (i.e., polyarthritis, fever, myalgia, pancytopenia, hypocomplementemia, and nephritis). Our case is characterized by the demonstration of acute nephritis as a complication of this infection, making it difficult to distinguish between a viral infection and the first episode of systemic lupus erythematosus.
    Systemic lupus erythematosus due to Epstein-Barr virus or Epstein-Barr virus infection provocating acute exacerbation of systemic lupus erythematosus?
    From: http://www.ncbi.nlm.nih.gov/pubmed/16200398
    Kasapcopur O, Ergul Y, Kutlug S, Candan C, Camcioglu Y, Arisoy N.
    Rheumatol Int. 2006 Jun;26(8):765-7. Epub 2005 Oct 1.

    Systemic lupus erythematosus (SLE) is a rheumatologic disease characterized by an inflammatory destruction of the target organ systems of the body in an unknown way by autoantibodies formed against self-antigens. Infectious agents like Epstein-Barr virus (EBV), cytomegalovirus and parvovirus B19 may have a role in the occurrence or the exacerbation of the SLE. In this report, the clinical follow-up of a 14-year-old girl diagnosed with SLE following an EBV infection with bicytopenia, lymphadenomegaly and hepatomegaly is discussed. This case could support the role of viral infections in the etiology of SLE.
    Lupus-like presentation of parvovirus B19 infection.
    From: http://www.ncbi.nlm.nih.gov/pubmed/15692957
    Sve P, Ferry T, Koenig M, Cathebras P, Rousset H, Broussolle C.
    Semin Arthritis Rheum. 2005 Feb;34(4):642-8.

    CONCLUSIONS: B19 infection may present a clinical and serological tableau making it difficult to distinguish between a viral infection and the first episode of SLE.
    Self-limited lupus-like presentation of human parvovirus B19 infection in a 1-year old girl.
    From: http://www.ncbi.nlm.nih.gov/pubmed/19500282
    Watanabe Y, Inoue Y, Takatani T, Arai H, Yasuda T.
    Pediatr Int. 2009 Jun;51(3):411-2.
  9. parvofighter

    parvofighter Senior Member

    Messages:
    436
    Likes:
    99
    Canada
    ORGAN DAMAGE in sun sensitive auto-immune and viral conditions: PART 3

    Fact 2: Other persistent viral infections in ME/CFS are also known to be associated with severe sun reactions
    These sun reactions include sun-sensitive skin conditions, organ damage, and the very real possibility of progression to cancer (lymphoproliferative malignancies). The flip side of this is that your photosensitivities might respond to antivirals, and/or antiretrovirals, as discussed in some of the references below. A number of examples on Epstein-Barr virus especially, are provided below.

    A personal note: A dear friend who also has ME/CFS and persistent Epstein-Barr infection is profoundly sensitive to the sun, experiencing exacerbations of her ME/CFS symptoms even with covered-up activities such as driving. She has been able to achieve something of a remission by careful and CONSISTENT avoidance of food triggers, and meticulous care to minimize sun exposure. Her mother died of a lymphoproliferative malignancy, and her daughter also has ME/CFS and persistent Epstein-Barr.

    What the Mayo Clinic says about Lupus and Epstein Barr
    From: http://www.mayoclinic.com/health/lupus/DS00115/DSECTION=lifestyle-and-home-remedies

    Infection with Epstein-Barr virus. Almost everyone has been infected with a common human virus called Epstein-Barr virus. Epstein-Barr virus causes nonspecific signs and symptoms, such as fever and sore throat. Once the initial infection subsides, the virus remains dormant in the cells of your immune system unless something reactivates the virus. For reasons that aren't clear, recurrent Epstein-Barr infections seem to increase the risk of developing lupus.
    From the NIH on Lupus and Epstein-Barr virus
    From: http://www.niams.nih.gov/Health_Info/Lupus/default.asp#link_dd

    Recent research has confirmed that one virus, Epstein-Barr virus (EBV), which causes mononucleosis, is a cause of lupus in genetically susceptible people
    Epstein-Barr virus involvement in the pathogenesis of hydroa vacciniforme: an assessment of seven adult patients with long-term follow-up.
    From: http://www.ncbi.nlm.nih.gov/pubmed/20367637
    Verneuil L, Gouarin S, Comoz F, Agbalika F, Creveuil C, Varna M, Vabret A, Janin A, Leroy D.
    Br J Dermatol. 2010 Mar 29. [Epub ahead of print]

    Hydroa vacciniforme (HV) is a chronic papulovesiculous photodermatosis of childhood, with some cases persisting through adulthood. In children, the Epstein-Barr-virus (EBV) has been detected in typical HV and in HV evolving into NK/T-cell lymphoma.

    Results: EBV-DNA blood loads were highly positive in the 7 HV patients, and negative in 34/35 of the patients with other photosensitive disorders (p<0.001). They were higher in photosensitive than in HV patients now in clinical remission.

    Conclusion: EBV is involved in HV pathogenesis and persists in adult HV patients. Positive EBV-DNA load, specific to HV in the spectrum of photosensitive disorders, might be a useful biomarker in HV.
    Antiviral therapy in children with hydroa vacciniforme.
    From: http://www.ncbi.nlm.nih.gov/pubmed/19688153
    Lysell J, Wiegleb Edstrm D, Linde A, Carlsson G, Malmros-Svennilson J, Westermark A, Andersson J, Wahlgren CF.
    Acta Derm Venereol. 2009;89(4):393-7.

    Hydroa vacciniforme is a rare, usually quite severe, photo-dermatosis. Association with Epstein-Barr virus infection and a possibly increased risk of lymphoproliferative malignancy have been demonstrated. We describe here four patients with Epstein-Barr virus-associated hydroa vacciniforme treated with acyclovir/valacyclovir therapy with a good clinical response. The children were reported to have less fatigue, fewer eruptions, less scarring, and increased ability to spend time outdoors without provoking new eruptions. This was also in agreement with clinical observations. However, one patient progressed into an anaplastic lymphoma kinase-1-negative anaplastic large-cell lymphoma in the upper jaw. This was preceded by an increase in EBV viral load. Acyclovir/valacyclovir therapy is a safe treatment.
    Artificial reproduction of atypical hydRoa vacciniforme caused by latent EpStein-Barr virus infection.
    Cases of hydroa vacciniforme-like eruptions caused by latent Epstein-Barr virus (EBV) infection have been reported in Asia and Mexico, some of which progressed to lymphoproliferative disorders
    RESULTS: The patient showed features of latent EBV infection serologically, and an in situ hybridization study indicated that most infiltrating mononuclear cells in the dermis were positive for EBV. After three exposures to UVA irradiation with a total dose of 90 J/cm2, erythema and vesicles appeared on the UVA-irradiated site but not on the UVB-irradiated site.

    CONCLUSIONS: Atypical hydroa vacciniforme caused by latent EBV infection could be reproduced by repeated UVA irradiation. Further study on the photo-protection would be necessary to prevent its progression to lymphoproliferative malignancies.
    Epstein-Barr virus-associated lymphoproliferative lesions presenting as a hydroa vacciniforme-like eruption: an analysis of six cases.
    From: http://www.ncbi.nlm.nih.gov/pubmed/15327544
    Cho KH, Lee SH, Kim CW, Jeon YK, Kwon IH, Cho YJ, Lee SK, Suh DH, Chung JH, Yoon TY, Lee SJ.
    Br J Dermatol. 2004 Aug;151(2):372-80.

    There are many reports of patients with a severe hydroa vacciniforme (HV)-like eruption in which cutaneous lesions occur in both sun-exposed and non-exposed areas, unlike in true HV. Several patients have died from a malignant haematological neoplasm. In most cases, a latent Epstein-Barr virus (EBV) infection has been detected in the skin lesions Skin lesions were induced by repeated UVA exposure in three patients and a latent EBV infection was demonstrated in the photoprovoked lesions.
    Epstein-Barr virus-associated central nervous system lymphoproliferative disease in a patient with acquired immunodeficiency syndrome responsive to highly active antiretroviral therapy.
    A 20-year-old man with acquired immunodeficiency syndrome (AIDS) and central nervous system (CNS) lymphoproliferative disease experienced improvement with highly active antiretroviral therapy (HAART) without radiation therapy.Our experience highlights the importance of biopsy in evaluating multifocal radiographic CNS lesions and the central role of HAART in treating AIDS-related CNS disease.

  10. parvofighter

    parvofighter Senior Member

    Messages:
    436
    Likes:
    99
    Canada
    ORGAN DAMAGE in sun sensitive auto-immune and viral conditions: PART 4

    Fact 3: Auto-immune conditions, often associated with opportunistic viral infections, can present with dire consequences as a result of sun intolerance
    It is not enough to blithely say, Get more sun. This is astonishingly reminiscent of the psycholobbys one-size-fits-all approach to exercise Its good for everyone!. NOT. If you are experiencing systemic reaction to sunlight, LISTEN TO YOUR SYMPTOMS, and avoid the sun until you have competent advice from a rheumatologist, oncologist, or other physical medicine specialist! And ask you physician about vitamin D supplementation, so that you can get the vitamin D you need, without organ damage. You dont need sun with benefits! Listen to the science, and dont risk permanent and serious damage to your health as a result of rash sun exposure!


    The Mayo Clinic on auto-immune lupus and sun exposure
    Risk Factors: Sunlight
    Exposure to the sun may bring on lupus skin lesions or trigger an internal response in susceptible people. Exactly why ultraviolet radiation has this effect isn't well understood, but scientists suspect that sunlight may cause skin cells to express certain proteins on their surface. Antibodies that are normally present in the body then latch onto these proteins, initiating an inflammatory response.

    Rash and Organ Inflammation precipitated by sunlight
    From: http://www.medicinenet.com/systemic_lupus/page2.htm

    The facial rash, along with inflammation in other organs, can be precipitated or worsened by exposure to sunlight, a condition called photosensitivity. This photosensitivity can be accompanied by worsening of inflammation throughout the body, called a "flare" of the disease.
    From: http://www.medicinenet.com/systemic_lupus/page5.htm#6howcan

    Since ultraviolet light can precipitate and worsen flares, patients with systemic lupus should avoid sun exposure.
    Sunscreens and clothing covering the extremities can be helpful.

    How does photosensitivity show up in Lupus?

    1. Sunlight can cause new skin lupus lesions (sores).
    2. Flares of internal lupus disease, including joint pains and fatigue, can also be triggered by sunlight.
    3. Some medications increase the effects of the sun on a person's body. People with lupus taking these drugs including tetracycline antibiotics and many others may also very occasionally develop "phototoxic" reactions. These will lead to easy sunburning, so if you are taking these "photosensitizing" medications, you will need extra protection against sunlight. Ask your doctor or pharmacist if any of your current or new medications might make you extra-sensitive to the sun.
    Avoid Other Sources of UV Light
    Sources of UV light other than sunlight can also cause skin problems in lupus. Thus, photosensitivity has been reported from fluorescent tube lights, which mainly emit UVA with small amounts of UVB, and from photocopiers, which emit mainly UVA and visible light. Fluorescent tubes can be fitted with acrylic shields which eliminate UVB emission, while photocopiers should not be used with the top cover up.

    Sun-induced life-threatening lupus nephritis.
    From: http://www.ncbi.nlm.nih.gov/pubmed/17893968
    Schmidt E, Tony HP, Brcker EB, Kneitz C.
    Ann N Y Acad Sci. 2007 Jun;1108:35-40.

    Photosensitivity is a widely known characteristic of both cutaneous and systemic lupus erythematosus (LE). We describe a 34-year-old woman who had been in complete remission of systemic LE for more than 8 years without treatment. After sunbathing, she developed acute sunburn followed by cutaneous LE in sun-exposed areas. Six weeks later, a lupus nephritis was diagnosed and high serum levels of antidouble-stranded (ds) DNA and anti-Ro/SSA antibodies were detected.


    Treatment with systemic cyclophosphamide and prednisolone led to septicemia requiring assisted ventilation for more than 2 weeks and repeated hemodialysis. (NOTE: In other words, she was on life support).

    Clinical remission was achieved 3 months later by the use of prednisolone and mycophenolate mofetile. Meanwhile, mild proteinuria persisted, anti-dsDNA antibodies normalized. We hypothesize that the sunburn-induced keratinocyte necrosis/apoptosis exposed intracellular antigens as trigger for the generation of autoantibodies that finally mediated immune-complex nephritis. The patient highlights the impact of UV light not only on skin but also on internal organ involvement in LE.

    Current concepts for the management of systemic lupus erythematosus in adults: a therapeutic challenge.
    FROM: http://www.ncbi.nlm.nih.gov/pubmed/12415083
    Ioannou Y, Isenberg DA.
    Postgrad Med J. 2002 Oct;78(924):599-606.

    Systemic lupus erythematosus (SLE) is a chronic, autoimmune rheumatic disease with many clinical presentations typically affecting women of childbearing age. The successful therapy of SLE depends upon treating both symptoms and the underlying inflammation. Both non-pharmacological as well as pharmacological therapies are invariably required. Non-pharmacological therapy includes avoiding over-exposure to sunlight with the use of adequate sunscreen protection

    Dermatologic manifestations in lupus erythematosus
    From: http://www.ncbi.nlm.nih.gov/pubmed/18562046
    Francs C, Barte S, Piette JC.
    Rev Med Interne. 2008 Sep;29(9):701-9. Epub 2008 Jun 17.

    Various dermatologic manifestations are observed in the different lupus subsets. Lupus lesions are most frequently characterized by a dermoepidermal dermatitis. Other lesions, vascular or nonvascular, are essentially present in association with systemic lupus erythematosusTherapy of cutaneous lupus is mainly based on antimalarials and avoidance of sun exposure.

    [The role of incomplete clearance of apoptotic cells in the etiology and pathogenesis of SLE]
    FROM: http://www.ncbi.nlm.nih.gov/pubmed/20107814
    Muoz LE, Lauber K, Schiller M, Manfredi AA, Schett G, Voll RE, Herrmann M.
    Z Rheumatol. 2010 Mar;69(2):152, 154-6.

    Systemic lupus erythematosus (SLE) is a complex prototypic autoimmune disease that is based on genetic factors (complement deficiencies) and is influenced by gender (female), environment (infections and UV irradiation), as well as random events (somatic mutations). The course of the disease is influenced by genes (e.g. FcgammaRIIA) and behaviour (sun-exposure). Inefficient clearance of dying cells and subsequent accumulation of apoptotic cell remnants is an intrinsic defect causing the permanent presence of cellular debris responsible for the initiation of autoimmunity
    The SLE-type autoimmunity addresses nucleic acid-containing complex antigens (viromimetica). Autoantibody-protein-nucleic-acid complexes are likely to be mistaken for opsonised viruses. As a consequence, the immune system responds with the production of type-I interferons, a hallmark of SLE (pathogenesis).

    (Note: Molecular mimicry)

    Advances in the management of UVR-associated skin cancers: autoimmune diseases and UV protection.
    From: http://www.ncbi.nlm.nih.gov/pubmed/19775364
    Lee HI, Worm M.
    Br J Dermatol. 2009 Nov;161 Suppl 3:96-8.

    Ultra violet radiation (UVR) is an important feature for the development or aggravation of several dermatologic diseases. In autoimmune skin diseases it has been suggested as an important cofactor in autoimmune bullous skin diseases and more importantly cutaneous lupus erythematosus (CLE). The pathophysiological role of UVR in CLE is a result of several effects which are triggered by UVR. In detail UVR induces apoptosis of keratinocytes and an abnormal local immune response which triggers inflammation in the skin. These findings result in the clinical approach of a stringent UVR protection in affected patients. Currently UVR protection is advised to patients as a supportive measure but cannot be prescribed to patients as these products are not licensed.

    Ultraviolet B exposure of peripheral blood mononuclear cells of patients with systemic lupus erythematosus inhibits DNA methylation.
    Systemic lupus erythematosus (SLE) is an autoimmune inflammatory disease, in which sunlight (especially ultraviolet B (UVB) 290-320 nm) is known to induce exacerbation of disease. DNA methylation regulates gene expression, and hypomethylation is associated with abnormal cell function in SLE...

    In conclusion, UVB exposure is able to inhibit DNA methylation, which subsequently takes part in the pathogenesis of SLE.

    COMMENT: RichvanK?

    Clinic and pathophysiology of photosensitivity in lupus erythematosus.
    From: http://www.ncbi.nlm.nih.gov/pubmed/19167524
    Lehmann P, Homey B.
    Autoimmun Rev. 2009 May;8(6):456-61. Epub 2009 Jan 22.

    Lupus erythematosus (LE) represents an autoimmune disease with great clinical variability in which photosensitivity is a common feature for all forms and subsets. The nature and characteristics of clinical photosensitivity in LE have been elucidated through standardized phototesting procedures. The development of skin lesions after UV-injury is typically delayed starting from a few days up to three weeks after the irradiation, and may persist for months. Therefore, patients may not be aware of the detrimental effects of sunlight for their disease

    Abnormalities of generation and clearance of UV-triggered apoptotic cells in LE are an important source of autoantigens. Recent data demonstrate the linkage of innate with adoptive immune pathways in UV-induced autoimmune response.

    Facts about Lupus and sun sensitivity
    From: http://www.uklupus.co.uk/fact12.html
    Systemic lupus erythematosus (SLE or lupus) is a multisystem disease with a tendency to cause skin rashes. These often appear on light exposed skin after exposure to sunlight (for example face, neck, hands, and feet). These rashes are called photosensitive rashes and are one of the hallmarks of the disease (see relevant lupus fact sheet). Some patients complain of feeling unwell after going out in the sun, even for relatively short periods of time (such as half an hour). For example, they may develop migraine, nausea (feeling sick) or joint pains. The joints may even become tender to touch and swollen. A true attack of arthritis due to increased activity of the disease (a flare) may follow. These are all manifestations of light sensitivity in lupus patients. Other aspects of the disease may deteriorate after sun exposure, including fever, pleurisy (chest pains on breathing in), kidney disease and more serious nervous system problems such as epilepsy (fits).

    The Mayo Clinic on being Sun Smart with Lupus
    From: http://www.mayoclinic.com/health/lupus/DS00115/DSECTION=lifestyle-and-home-remedies

    Management:
    Be sun smart. Because ultraviolet light can trigger a flare, wear protective clothing, such as a hat, long-sleeved shirt and long pants, and use sunscreens with a sun protection factor (SPF) of at least 15 every time you go outside, even if it's just a quick trip to the mailbox. Be sure that your ears, scalp and the backs of your hands are protected. Avoid tanning beds and stay out of the sun entirely when it's strongest, from 10 a.m. to 4 p.m. if possible. Because fluorescent and halogen lights also can emit ultraviolet (UV) rays and thus aggravate lupus, you may need to wear sunscreen and protective clothing indoors or use plastic devices that block UV emissions from indoor lights.

    Risk Factors:
    Sunlight. Exposure to the sun may bring on lupus skin lesions or trigger an internal response in susceptible people. Exactly why ultraviolet radiation has this effect isn't well understood, but scientists suspect that sunlight may cause skin cells to express certain proteins on their surface. Antibodies that are normally present in the body then latch onto these proteins, initiating an inflammatory response. Damaged skin cells also seem to die more frequently in people with lupus, leading to even more inflammation.

  11. parvofighter

    parvofighter Senior Member

    Messages:
    436
    Likes:
    99
    Canada
    ORGAN DAMAGE in sun sensitive auto-immune and viral conditions: PART 5

    Fact 4: Vitamin D is believed to be critical to minimize auto-immune and viral pathology. But you dont have to get it from the sun if your are sun-intolerant
    The simple benefits of sun (eg. Vitamin D) must be judiciously weighed with the dire risks of organ damage in some of these auto-immune and persistent viral diseases. If you are photosensitive, you can get your Vitamin D safely (i.e. orally). For heavens sake, ask your doctor and base your medical decisions on rational, scientific evidence!


    Vitamin D deficiency in systemic lupus erythematosus: prevalence, predictors and clinical consequences.
    FROM: http://www.ncbi.nlm.nih.gov/pubmed/18411213
    Ruiz-Irastorza G, Egurbide MV, Olivares N, Martinez-Berriotxoa A, Aguirre C.
    Rheumatology (Oxford). 2008 Jun;47(6):920-3. Epub 2008 Apr 14.

    RESULTS: Ninety-two patients (90% women, 98% white) were included in the study. Sixty-nine (75%) and 14 (15%) patients presented with vitamin D insufficiency and deficiency, respectively. Female sex (P = 0.001), treatment with HCQ (P = 0.014) and treatment with calcium and vitamin D (P = 0.049) predicted higher levels of 25(OH)D. Photosensitivity [odds ratio (OR) 3.5] and photoprotection (OR 5.7) predicted vitamin D insufficiency and deficiency, respectively.

    CONCLUSIONS: Vitamin D insufficiency and deficiency are common in patients with SLE and are associated with sun avoidance. HCQ prevented vitamin D deficiency. Vitamin D deficiency was related to a higher degree of fatigue.

    Note: Sun avoidance is a very sensible thing to do if your viral/auto-immune symptoms are exacerbated by sun, and if you risk organ damage. You may however experience increased fatigue if you are Vitamin-D depleted. In other words, patients have an option: to avoid an exacerbation of their ME/CFS or lupus symptoms by avoiding the sun and to take vitamin D supplements. Or to get vitamin D from the sun and risk organ damage. Talk to your doctor!

    Serum 25-hydroxyvitamin D levels in patients with cutaneous lupus erythematosus in a Mediterranean region.
    FROM: http://www.ncbi.nlm.nih.gov/pubmed/20305048
    Cutillas-Marco E, Morales-Surez-Varela MM, Marquina-Vila A, Grant WB.
    Lupus. 2010 Mar 19. [Epub ahead of print]

    Low vitamin D levels have been found in patients with autoimmune diseases, including type I diabetes, rheumatoid arthritis, multiple sclerosis and systemic lupus erythematosus. The main source of vitamin D is exposure to sunlight, but the same solar radiation is known to exacerbate lupus erythematosus.

    We investigated the prevalence of vitamin D insufficiency in patients with cutaneous lupus erythematosus (CLE). Approximately 95% of patients with CLE had less than 30 ng/ml of serum 25(OH)D, which is accepted as the lower limit for vitamin D adequacy. Mean serum vitamin D values were significantly lower than controls (p = 0.038) and were associated with higher levels of parathyroid hormone (p = 0.050). A history of CLE was a strong predictor of insufficiency of vitamin D (odds ratio 4.2; 95% confidence interval 1.0-17.4). The results suggest a role of CLE in the metabolism of the vitamin and provide guidance for future studies looking at a potential role for vitamin D in the prevention and treatment of CLE.

    Vitamin D and Autoimmune Rheumatologic Disorders.
    FROM: http://www.ncbi.nlm.nih.gov/sites/entrez
    Pelajo CF, Lopez-Benitez JM, Miller LC.
    Autoimmun Rev. 2010 Feb 8. [Epub ahead of print]

    A much higher oral vitamin D intake than the current guidelines is necessary to maintain adequate circulating 25(OH)D levels in the absence of UVB radiation of the skin. In addition to the traditional known metabolic activities, vitamin D has been shown to modulate the immune system, and its deficiency has been linked to the development of several autoimmune disorders including type 1 diabetes and multiple sclerosis. Experimental use of vitamin D has revealed a novel role in the immunopathogenesis of autoimmune diseases. Disorders such as systemic lupus erythematosus, rheumatoid arthritis, Behet's, polymyositis/dermatomyositis and systemic scleroderma have all been associated to some extent to vitamin D deficiency. If vitamin D deficiency occurs at a higher rate in patients with autoimmune disorders, then appropriate supplementation may be indicated.

    ---------------------------------------------------------------------------------------------------------
    A FINAL NOTE: Does this mean that everyone with ME/CFS will have sun intolerance and run the risk for organ damage? Absolutely not. It does mean, however, that IF your symptoms are worsened with UV exposure, LISTEN to them, and consult with your doctors! And remember the silver lining - if your sun intolerance is related to viral or retroviral infection, there may be hope in the form of meds.

    A REQUEST: I am starting a new thread entitled, "Legal and Ethical Risk: How to address it on this Forum" for a potential discussion of moral/legal obligations related to posts which run the risk of endangering the health of forum participants.

    Please restrict the discussion on this thread to the science and personal experiences of sun intolerance, so the great thread started by helsbells doesn't get mixed up in the politics.
  12. parvofighter

    parvofighter Senior Member

    Messages:
    436
    Likes:
    99
    Canada
  13. Dreambirdie

    Dreambirdie work in progress

    Messages:
    4,964
    Likes:
    3,019
    N. California
    I've almost always benefitted from being in the sun. It usually makes me feel better.

    The only exception to this is when I am already very dehydrated. Then I must avoid it.
  14. Esther12

    Esther12 Senior Member

    Messages:
    5,142
    Likes:
    5,028
    AAAAaarggh!!!

    You've CBT'd my mind - my thoughts are collapsing in on themselves - please help...





    I'm pleased you're able to enjoy the sun. For me, it's perfect at the moment - a gentle warmth rather than the more intense heat of the summer. I've been lucky enough to be able to enjoy some time reading in the back yard recently and don't think that saying this is really a threat to others here.
  15. Dreambirdie

    Dreambirdie work in progress

    Messages:
    4,964
    Likes:
    3,019
    N. California
    I have no idea what you're talking about here. :confused:

    I wouldn't dare CBT anyone. And can't find anything particularly threatening about reading a book in the backyard.
  16. Esther12

    Esther12 Senior Member

    Messages:
    5,142
    Likes:
    5,028
    Hi Dreambirdie - sorry for the confusion. I was just using your post to reply to parvofighter's comments.
  17. oerganix

    oerganix Senior Member

    Messages:
    611
    Likes:
    4
    Parvo, dear, take a deep breath. Step back. I love you, but you are not my daddy, my doctor or my god.

    Thanks for sharing all that info, but leave it to the individual to decide whether it applies to her/him and what, if anything, to do about it.

    I agree that "pushing through" is bad advice for most people and listening to your own body is good advice. (More exposure to what you are already sensitive to usually results in even more sensitization. Avoidance can lower your sensitivity, in some cases.)

    I appreciate that you are drawing on some personal experiences with the subject, but going 'messianic' on us will only increase resistance to what you have to say.

    Hugs. Now go chase your tail or dig up a bone.
  18. Dreambirdie

    Dreambirdie work in progress

    Messages:
    4,964
    Likes:
    3,019
    N. California
    oerganix--

    Thanks. You're very sweet and true... and funny!

    Woof!
  19. kerrilyn

    kerrilyn Senior Member

    Messages:
    246
    Likes:
    2
    Helsbels, I'm sorry you have such difficulty with the sun. I remember years ago being very photosensitive to bright sun light. My eyes would start to run/water so much that I couldn't see where I was walking. That has improved a lot, but I limit when I am in the sun. I do find it tires me out too. Now that I finally understand POTS/OI, I know why that heat really does me in and has for a long time.

    Parvo, thanks for all that info. I recently tested myself for Vit D and found it's quite low. I've been trying to sit in the sun more to correct that. I didn't realize that could be a problem for people with autoimmune diseases. I'll have to pay closer attention to how it makes me feel.
  20. helsbells

    helsbells Senior Member

    Messages:
    297
    Likes:
    8
    UK
    Thanks parvofighter for going to the trouble of posting all that info. I have just returned from attending the hospital apts and have not had time to properly digest it but certainly will. Am just a bit too fogged to absorb. It is strange and I think there is something in it, exposure can work together with another factor such as period commencing or taking a new drug (but even tiny amounts of theoretically unproblematic/mild drugs) which is why I got them to check for porphyria just to come up with a tangible reason but as you are suggesting it may be a more complicated than than. Still annoying tho LOL. Thanks to everyone for offering their opinion, ideas. You are all coming up with more thoughts than the NHS in Uk anyway :)

See more popular forum discussions.

Share This Page