Severe ME Day of Understanding and Remembrance: Aug. 8, 2017
Determined to paper the Internet with articles about ME, Jody Smith brings some additional focus to Severe Myalgic Encephalomyelitis Day of Understanding and Remembrance on Aug. 8, 2017 ...
Discuss the article on the Forums.

PMLE? (Sun Allergy)

Discussion in 'Skeleton, Skin, Muscles, Hair, Teeth, and Nails' started by Strawberry, Dec 9, 2014.

  1. Strawberry

    Strawberry Senior Member

    Messages:
    799
    Likes:
    1,492
    Seattle, WA USA
    I am curious if there are many people with sun allergy at PR? I did a search for PMLE and only found one post. I know it is very common with Lupus, but that was ruled out for me.

    I think my real question, is if there are enough people with this issue, could we create a group?


    (and for those that don't know what it is: http://www.mayoclinic.org/diseases-...light-eruption/basics/definition/con-20030452

     
    snowfairysfly and L'engle like this.
  2. IreneF

    IreneF Senior Member

    Messages:
    1,552
    Likes:
    2,560
    San Francisco
    I've occasionally had it, but I'm housebound now so I'm not exposed to the sun. I'm also fair-skinned (I never tan).

    The last time I went for a hike I got wheals on my exposed skin plus shortness of breath. (That was about seven years ago.) I headed back to car and rested until my companions returned, and my symptoms went away.

    I got it as a kid, too, so it's not a new condition. I think the ME/CFS just exacerbated it.

    It's not an issue for me at present because I don't do anything that induces it.
     
  3. Strawberry

    Strawberry Senior Member

    Messages:
    799
    Likes:
    1,492
    Seattle, WA USA
    Since you and I are the only ones that responded, I am going to assume this isn't a wide spread issue with ME/CFS. I have been wondering about what my trigger could be, but this makes me think it was older. I had my first PMLE outbreak at age 14, although it wasn't diagnosed until age 40. I am now wondering if it could have been the blood transfusion at age 19, as I didn't have MCS and fatigue issues before that. And MCS definitely seems to be popular amongst ME/CFSers!
     
    snowfairysfly and L'engle like this.
  4. L'engle

    L'engle moogle

    Messages:
    1,560
    Likes:
    2,342
    Canada
    @Strawberry
    Yes! I can't let the rays of the sun touch my face. It turns red instantly. Too fast to be a sunburn. I know another person who has this problem but she doesn't have ME/CFS to my knowledge. We can always PM about it if there aren't enough people for a group.

    And I'm actually not 'goth' despite my profile picture. I just have to live like one! :D
     
  5. IreneF

    IreneF Senior Member

    Messages:
    1,552
    Likes:
    2,560
    San Francisco
    What I got was definitely an allergic reaction. I don't know if all photosensitivity is allergic.

    I also got sensitive to sunscreen. I now use Paula's Choice or something my daughter picked up in France when I have to go out.
     
  6. OverTheHills

    OverTheHills

    Messages:
    462
    Likes:
    1,034
    New Zealand
    I had this for many years from late teens (decades before I got ME) I got some treatment for a couple of years which was difficult and unpleasant but helped (PUVA). After that made sure I got as much sun exposure during the winter as I could and I didn't really have too many problems.

    I don't think PWME should try the PUVA treatment.

    I believe sun sensitivity which starts immediately after exposure is a different thing to PMLE.

    OTH
     
    L'engle likes this.
  7. Strawberry

    Strawberry Senior Member

    Messages:
    799
    Likes:
    1,492
    Seattle, WA USA
    Check the ingredients in the sunscreen for avobenzone? That actually is good at blocking PMLE. It is easier to find in Europe than the US.....

    For the record, my hives don't start until about 24 - 48 hours of sun exposure. About the same time frame as my PEM. Although I do get immediate rash. But even if rash isn't PMLE, it is similar in treatment @OverTheHills in my opinion.

    Is 4 (so far) enough people to start a group? Or should we just post tips here? I have many. :balloons:
    (@L'engle your bat is adorable!)
     
    Last edited: Dec 12, 2014
    L'engle likes this.
  8. IreneF

    IreneF Senior Member

    Messages:
    1,552
    Likes:
    2,560
    San Francisco
    It's not enough of a problem for me to be in a group.
     
  9. OverTheHills

    OverTheHills

    Messages:
    462
    Likes:
    1,034
    New Zealand
    Just a clarification @Strawberry, treatments for hives/skin rashes once you have them are not what I was talking about.

    The PUVA treatment is preventative, a sort of desensitisation. It involves heavy duty liver-toxic drugs and graduated exposure to a different wavelength of ultraviolet light twice a week over 6-8 weeks in a hospital sunbed type machine in the dead of winter. You have to sign disclaimers about skin cancers and the drugs made me feel pretty nasty as a healthy person in my 20s. Thats why I suggested it would be a no-no for PWME.

    I realise sun sensitivity probems are no fun at all, having been there myself, Good luck with your group if you go ahead.

    OTH
     
  10. Strawberry

    Strawberry Senior Member

    Messages:
    799
    Likes:
    1,492
    Seattle, WA USA
    I stumbled upon a recent article while researching PMLE, so I thought it was about time to update this thread.

    Here is the article, if someone wants to read it all, but I will post the highlights.
    http://emedicine.medscape.com/article/1119686-treatment

    What the main things were that worked are mostly the same as what I have trialed myself.

    I have found a product called Shirudo AGR+E https://www.shirudo.com/collections/all/products/agr-e-lotion-tube-250ml that has both of these ingredients. I just bought my second bottle, so I am hoping to get some natural vitamin D this summer! It is expensive, but so worth it. Also of note with Shirudo, I have seen positive reviews from people that get rash upon immediate exposure, and people like me that get hives 48 hours later. My daughter put some on a bug bite that had been driving her crazy and it quit itching almost immediately. So this might work for more people than PMLE alone. I think it could help Irene?

    It also mentions
    I have not looked for this, it isn't the same D3 that I take. That is all I know.

    Avobenzone is what I always try to find in sunscreen. 2% is hard to find in low SPF, but 2% is common in most Banana Boat sunscreen, as well as apparently it can be found in European formulas.

    I just started back on beta carotene yesterday. Interesting that it is comparable in effectiveness to chloroquine. I have heard that some people with ME/CFS respond well to antimalarials?

    And last thing I need to look into:
    Here comes the sun! Da-da-da-da daaa!
     
    L'engle likes this.
  11. Strawberry

    Strawberry Senior Member

    Messages:
    799
    Likes:
    1,492
    Seattle, WA USA
    L'engle likes this.

See more popular forum discussions.

Share This Page