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Lupus vs. Sun/Heat and new to the forum.

Discussion in 'Living with lupus' started by Labrat, May 17, 2017.

  1. Labrat

    Labrat New Member

    Looking for peoples experience with SUN!!!! Tanning? Use of 100 spf vs. 30spf? How does it make you feel? Skin reactions? Anything that you have experienced with exposure to HEAT?SUN.
    New to the forums but excited to ready about others experiences with Lupus. In a nut shell I was dx In October the 18th to be exact. After 9 days of unexplained fever reaching 104.0 alternating tylenol and ibuprofen ever 4 hours. CRAZY horrible headaches, body aches, 3 PCP visits, 1 infectious disease visit, 1 ER visit and finally admission to the hospital for 3 days they officially dx me with Lupus, Sjorgens, and Autoimmune hep and bilalary cirrohisis. Crazy mess I tell ya! Pos DS ANA, actin smooth muscle and mitochondrial Antibodies elevated, Sjorgen >8.0 my EBV panel was through the roof except IgM so there for it currently was not MONO. Elevated liver enzymes, kidney functions all out of sort. Over the 9 days of test my platelets began to trend down and finally down to 38 which was the key to get hospitalized. I could hardly focus, I just was going with the flow of all these horrible things because I was not really sure what was going on and too tired and confused to care. Came to my lab for the blood work and we were ALL surprised to find these results. I knew the platelet situation was bad very very bad. There was the one huge sign my body was destroying itself very quickly. Previous issue nothing much really the pretty common Auto immune thyroditis which I have been taking medication for that for oh 8 years.
     
  2. susane

    susane Registered

    Hello Labrat,
    I am sorry to hear you have been through so much, but glad you found out what was causing all your issues. I am using right now the uv sunscreen of 50, but higher is probably more helpful. I have to take my levels slow. I have avoided as much as I can so far this year of being out in the sun. Me and my husband last Saturday had to be out in the sun when going to a graduation, and we both felt bad. It did affect me like a poison. Let us know how things continue for you.

    susane
     
    Labrat likes this.
  3. Labrat

    Labrat New Member

    Thank you!
     
  4. mark176

    mark176 Active Member

    Hi

    When I go out for the day i do use spf100 #, wear a sun hat. That is normally sufficient to protect me. However, I would say my photosensitivity is in the milder category.

    Kind regards
    Mark
     
    Labrat likes this.
  5. Labrat

    Labrat New Member

    OH ya i have a sun hat I bought 3 different kinds. I love hates, guess it is a good thing.
     
    Last edited: May 17, 2017
  6. susane

    susane Registered

    I have a big white sun hat, and a bit smaller greenish one my son got me. They help some too.

    susane
     
  7. Ingred

    Ingred Registered

    Hi Labrat:

    I have not been on this forum for a very long time. I find as I have gotten older, sunscreens and SPFs still drive my skin crazy. My skin used to flush red every time I put them on, and I would perspire so much that it would virtually wash off! The only thing that worked really well for me, I can no longer find anywhere where I live. It is called Piz Buin and you can get through duty free stores or in Europe. Most sunscreens are either full of chemicals or over perfumed and my skin doesnt like it. . I use sunscreens made for children, apply them and then wipe the excess off immediately, or my skin goes bright red and blotchy, and I get a rash, sweat profusely, and have to wash it off. I now use argan oil on my face, blot it off, a big hat and cover myself while I wait for friends to bring Piz Buin back from overseas for me.

    It is not easy being a lupie... hope you are able to find a product that works for you.

    Feel Better

    Wolfwoman
     
  8. x_claire_x

    x_claire_x Moderator

    Hiya... not sure going above 50 then improves things much more than the 50 does already... I get mine on prescription as recommended by St Thomas's which used to be the Lupus Centre in London........... I find it fab and not had a flare since using it....had a dreadful experience away before I started on everything.
    It is called Sunsense and they do a facial matt one and a body one.........highly recommended even in the Caribbean I rarely have to reapply and it is not too greasy once it has absorbed.

    Hope that helps............Claire
     
  9. Surferboy

    Surferboy Registered

    Claire what is the St Thomas' recommendation? Sun Sense?

    Also, has anyone tried the once a day P20? A friend of mine (who doesn't have lupus) swears by this stuff.

    Or else, can anyone recommend a good spray on Factor 50+? Ideally a clear non greasy one. Or are these no good for lupus patients?
     
  10. Bane

    Bane Member

    A hat will do the trick for me
     
  11. x_claire_x

    x_claire_x Moderator

    Hi Surferboy...according to the Drs that was the recommended sunscreen for Luppies as so good and it can be prescribed for you. The only prob with P20 is that it is only factor 20 ...that would not be secure enough for me personally. Also be careful of the sprays as they don't always provide good coverage but can be fab as a top up....the Lupus Unit is now at Guys so you could give them a call to see if that is still current as I am talking 8 yrs ago...be interested to hear the outcome......Take care...Claire
     
  12. Surferboy

    Surferboy Registered

    Hi Claire, I'm quite certain I've seen P20 in factor 50. I'll double check this though. And as for sprays - yup they are only for top up when I'm at work or in a rush. In the mornings it's always sunsense :)
     
  13. x_claire_x

    x_claire_x Moderator

    Be interested if you find P50...please let us know :0)
     
  14. Surferboy

    Surferboy Registered

  15. x_claire_x

    x_claire_x Moderator

    Thanks Surferboy...no reviews on that link..be interesting to hear how effective it is...hope it really is as it is another choice for photosensitives :0)
     
  16. Surferboy

    Surferboy Registered

    I done a quick bit of research. This product may not be good for us as there were some people saying they started to burn after a few hours. The reviews were for a mix of all factors 20, 30 upto 50. It also stains clothes!

    I've attached link below.

    https://www.amazon.co.uk/Riemann-P2...K/ref=cm_cr_getr_mb_paging_btm_6?pageNumber=6

    Has anyone tried Garnier Ambre Soleil or Boots own brand sprays? These got good reviews.
     
  17. x_claire_x

    x_claire_x Moderator

    I used to use P20 but if you sat in a light fabric chair it stained the chair and clothes...no way to shift the yellow tinge...Lol...so I stopped . It was a kind of urine shade and nobody wants to be wearing that !

    Boots own brand sunscreens let me down years ago.....but may be better now...the Avon ones were always pretty reliable but with Piz Buin I can use a lower factor and it always works so well, that is the lotion mind but hope the spray would be as consistent used Piz Buin for over 30 yrs...........in fact think I will mix it up a bit more now my skin has settled a bit...like the smell :0)
     
    mark176 likes this.
  18. Surferboy

    Surferboy Registered

    Claire do you have only discord lupus? Or systemic lupus? I'm wondering whether the factor of block would be decided upon depending on type of lupus.

    I might give Garnier 50 spray a try. Use Sunsense in morning. And top of during day with the spray.

    As for P20 - really don't fancy walking round with pee coloured clothing :lol:
     
    x_claire_x likes this.
  19. susane

    susane Registered

    We don't want pee colored clothing. hehe..

    susane
     
    x_claire_x likes this.
  20. Surferboy

    Surferboy Registered

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