Comment

Comment by Susanne on March 22, 2013 at 8:21am

Jules, I'm still gluten-free. It's helped my skin on my forehead a lot,but not so sure about the hair-loss. Hard to know, as I am also taking plaquenil and eating better all the way around. Since some daily hair loss is normal, it's always hard to know. Still have doll's hair for sure - nice description - but it's hanging on for now and I can still get away with a comb-over.

Comment by Jules UK on March 22, 2013 at 5:19am

Celia, we're told it takes 6months for these meds to take effect, but we don't have that luxury of time. I practically rattle with all the tablets, homeopathic and food supplements, I'm taking. A friend also gave me some argan oil to rub into the scalp for its anti inflammatory properties. It's a bit smelly but feels nice.
How is anyone getting on with Protopic? I'm sure it made my FFA speed up. I told Dr Harries and he gave me Elidel, which contains the same active ingredient. I fear there is a very limited toolbox at our disposal and we have to work through it regardless of our individual reactions.
Celia, I hope your holiday was relaxing! Back to an English spring!
Jules x

Comment by Jules UK on March 22, 2013 at 4:45am

Hi all, and thanks Alice for showing that there's always something to giggle at! :-)
Judy, it's heartening to have some positive news here. My front hairline is getting worse at the mo. "doll's head" hair describes it perfectly. It gets wiry then falls out. Doxycycline seems to have no effect. Nor the homeopathic treatments I'm trying.
Is anyone else still on a gluten free diet? I lapsed a couple of weeks ago and perhaps hairloss has worsened since then. Back on it after the weekend.

Comment by Judy on March 22, 2013 at 4:01am

Hi - sorry I didn't get to answer eariler. My dermatologist is the one who said the hair loss has stopped "for now" but to continue the Hydroxycloride. She will check again in 3 mos.
Sorry to be so vague but I HATE looking at my forehead and avoid
it at all costs. I am wearing long bangs so really don't need to
see the loss. As we all know these things can be temporary so I
am trying to think positive.
Eyebrows - don't know why some are growing (mind you it is only
some - I can count them). My dermatologist suggested adding dabs of Clobasol to the eyebrow area to see if that helps them also.
The Probiotics I get at Whole Foods, the refrigerated ones. I
think any health food store could suggest good ones.
I really don't know how long I have had the FAA but the eyebrows
and body hair loss started at least 3 years ago. I never looked
at the forehead. But that said I can only go by the eyebrows -
this is the first time in 3 years I have seen ANY growth and that has to be the Hydroxycloride. Possibly the probiotics and possibly
a little more sleep and less stress and possibly the DHA Shampoo and conditioner. Who knows? I hate to guess as I am happy to be in remittance. Will see in 3 more months.
So much good info on these posts. I am very proud of you all
that are wearing wigs - they are so attractive but I don't think I could tolerate one on my head. But I love the scarf ideas - I usually wear a hat when wind is blowing or bangs are having a "bad hair" day. Probably a little odd when I am inside but who cares?
Good luck everyone.

Comment by Debs on March 22, 2013 at 3:13am

Caro, last night I took my plaquenil with only about 3 mouthfuls of milk and I didn't get any reactionn, usually I take it with a proper meal (breakfast and then dinner) so I think you are right and your generic version is a bit tough on your tummy.

Comment by Simone NJ USA on March 21, 2013 at 7:37pm

Thanks, Alice...same to you...x

Comment by Alice on March 21, 2013 at 4:41pm

Comment by Alice on March 21, 2013 at 4:41pm

Simone, I put the cream all over the brow area. It spreads easily, so takes just a tiny amount.
A belated St. Pat's wish to all of you: "May the wind be ever at your back." I think this old Irish blessing may have special significance to those of us with FFA. :-)

Comment by Simone NJ USA on March 21, 2013 at 2:16pm

Hi Alice:

Thanks for the Info..will ask my Derm for this!!! Do you put it over the entire brow area or where you see the sparse areas?
Also.,Debs..I always look forward to seeing your different looks and am inspired that you have embraced the whole 'wig thing'.....I hoping to be adventurous and brave when it's my turn...

Comment by Caro UK on March 21, 2013 at 12:52pm

I am having burning pain and bloating in my stomach since I started taking hydroxychloroquine sulphate. Worse after I've eaten. I haven't been given Planquenil, my medication is the generic form (manufactured by Blackrock Pharmaceuticals). Perhaps this is the reason? I suspect I've been given it because it is cheaper than Planquenil. I'm going back to my GP to ask for Planquenil as I read somewhere (can't remember where!) that it is easier to tolerate. Anyone else had the same side effects?

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