Comment

Comment by Debs on July 6, 2014 at 1:50pm

I have been diagnosed with episcleritis (an eye condition) it is not a serious medical condtion and my GP referred me to my local eye clinic. The consultant said it is caused by "inflammation in the body and it is not known what causes it"... Sounnds familair ladies! I have steroid eye drops and some froben tablets to reduce inflammarion.

I do follow the anti inflammatory diet however the past couple of months have been extremely stressful in my department at work and I have not followed the diet as strictly as I usually do plus the stress may well have contributed to this eye problem.

I am going to consult a medical herbalist, I went to one of her raw food diets back in February and she is really up to speed on diet to cure/ help health.

Once I have my consultation I will share whatever she tells me with you. I want to ask her to help my control my current inflammation in my body and prevent future medical problems caused by inflammation.

Comment by Jen S. on July 5, 2014 at 6:38pm

Polly - you look great.  I've only been taking the hydroxychloroquine for 2 months, so would prob ably be too early for any significant side effects.

Comment by PamW San Diego, CA, USA on July 5, 2014 at 6:03pm

Hey, Polly. I never heard that can be a side effect. Thanks for letting us know. I like your new photo.

Comment by Polly UK on July 5, 2014 at 5:23pm

I forgot to say that I've been taking Hydroxy for 10 months.

Comment by Polly UK on July 5, 2014 at 5:22pm

Hi all, I had my 6 month NHS appt with my derm last week and the good news is that he thinks my FFA is stable but then he spotted some greyish brown pigmentation on my chin and neck which he thinks is due to Hydroxychloroquine! I've cut down to one 200mg daily instead of 2 but I think it's time to stop as the derm advised me. Shame as I'm sure it worked for me.... has anyone on here experienced any skin changes whilst on Plaquenil/Hydroxychloroquine?

Comment by Classical Anne in NC mountains on June 29, 2014 at 12:48pm

Catherine, I appreciate your description of your experience with severe sunburn.  It does sound like your body was rather drastically affected.  But I wouldn't want you to ruin an otherwise good memory of such a nice long walk on what turned out to be a beautiful day.  I'm afraid the truth is, that if the extreme burn didn't trigger the FFA, something else would have eventually.  Until we learn to communicate with the most basic particles of our own interiors, those of us who are susceptible to autoimmune response, will see it manifest in one way or another, sooner or later.  So sorry that it happened to be your 'crowning glory' In this case, but trust you'll continue to enjoy long walks and swimming.  Glad you liked the link to buffs, and thank you for the link to sun protection cream.  Now let's go outside and have fun!

Comment by Catherine on June 28, 2014 at 2:59am

Thank you everyone. Anne you are right, my doctor was not suggesting that the sunburn itself was the trigger, but rather the shock that my body went through (it was a bad sunburn). I remember that my body felt traumatized at the time and for at leasts 24 hours my heart was beating very quickly as a result of the stress (it was such a stupid thing - I went for a walk on what looked like a cloudy day, didn't put any cream on, the sun came out and I got scorched on my arms and legs). Interestingly, there is a strong link between sun exposure and discoid lupus, which has many of the same symptoms as LPP (and there exists a crossover syndrome between the two conditions). Anyway who knows, but you can imagine how much I regret that walk...

Thank you for the link to the buffs. They look like the perfect thing for swimming and hiking, which I do a lot of. After much searching, I found SPF 50 suncream with titanium dioxide (which as well as zinc oxide offers the best protection according to this great website http://www.ewg.org/2014sunscreen/) and without fragrance or parabens, which I will be applying generously to my head and body! My forehead is very scarred, so I want to avoid pink or white patches if possible.

Thank you all! C xxx

Comment by Maddy, California, U.S. on June 27, 2014 at 8:00pm

Thank you Anne for that link to the buffs! I love a few of them and just ordered two! They should be great for hiking this summer! I have never noticed the sun affecting my FFA either...other than the more noticeable white band that others have mentioned...and I live in Southern California!

Comment by Celia on June 27, 2014 at 5:50pm

I always wear a hat - SPF 50 according to the label when gardening.  Always factor up daily anyway. Anyone with expensive eyebrow tattoos should protect them with sunscreen or they will fade and the process begins again perhaps sooner than necessary.  Do not believe that exposure to UV could possibly trigger FFA.  If it were that simple we would be on the brink of a breakthrough !  And why would this exposure set off a killing spree on the hair follicles, starting with eyebrows, then forehead, above ears and backwards.  The weather forecast is not so good this weekend.........but it's good to bat ideas around, thank you !

Comment by Classical Anne in NC mountains on June 27, 2014 at 3:08pm

I don't think Catherine's MD was suggesting a link between sunburn and FFA in general.  But if it was a significant burn, it could have been a contributing trigger.  Just as the stress of caring for a dying parent [or whatever has caused significant stress in our lives] may have helped to trigger this autoimmune response.  But the stress was not the cause, just the trigger that stirred up the autoimmune reaction that was lurking in our system.  That's the nature of autoimmune diseases.  And though it may be hard to think of sunburn as stress, I once was so severely burned that I could not stand without passing out, and was diagnosed with 'sun stroke'.  And the burn itself was an over-reaction, apparently, to hormonal changes, as I was with my family, each of us having the same amount of exposure, and no one else was burned.

Anyway, I have more or less hidden from the sun, and been careful with sunscreen ever since.  Now with FFA, I do notice how sensitive the exposed scalp is, and how pink it turns in an instant [how do you put sunscreen in your hair?], but like Liz says, all the newly balding areas will not tan.  The pink goes away and you're left with white.  For me, the solution is a hat or scarf that covers all the thinning areas.  But if you want to actually go swimming, a Buff would be the answer.  The good ones, such as the UV Half Buff, are made with water-wicking fabric that keeps your head cool and gives UltraViolet protection.  Here's the link to an original U.S. supplier http://buffusa.com/sports/collections/uv-half-buff-reg/styles/filte....  I'm sure something similar can be found elsewhere in the world.

Have a grand time in Morocco!  And happy sunny days to the rest of us!

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