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Comment by Polly UK on September 7, 2013 at 4:05am

Thanks Linda x

Comment by April on September 6, 2013 at 8:29pm

Chrisy, my derm said he didn't want to put me on oral medication if I was not done having children because of side effects. However, I would think your OB has much more experience so I'm sure you can trust her opinion. I am going to talk to my OB about it at my appt. this month. My doctor is honestly not very helpful with any of this and I'm thinking of switching. It sounds like some of you ladies are seeing some great doctors. Chrisy, definitely keep us posted on how the Plaquenil is working for you. Maybe I will try it, since I just hate feeling like I'm not at least trying. Thanks!!

Comment by Polly UK on September 6, 2013 at 8:26pm

I had a thorough eye test a month ago before starting Hydroxy. They had a machine which took pictures of the backs of my eyes which were fine and they said it was ok to go ahead with it. I have a question.... my derm said I can now start taking 2 tablets a day as I am obviously tolerating it so I assumed he meant one tablet in the morning and the other in the evening but now I'm wondering if I take them at the same time? What do others on here do?
Off to Scotland for a week from Monday and will need a case just for all the extra pills and potions plus hats and scarves!

Comment by KarenGinny - Iowa, US on September 6, 2013 at 6:08pm

Celia, I haven't had it done yet, he told me to schedule a visit with the eye dr within the next month. I can post about it when it's done. Pam - I understand your comments about being less active. I feel like I can't go outside anymore unless I have a hat to wear or a headband to wear to hide my bald spots. I hate the wind blowing my hair around and it's hard to enjoy taking a walk or swimming when I'm constantly worried about my hair. I stopped going to an exercise class a year ago because I didn't want my hair exposed to the whole group. I wear my hair with long bangs in the front but there's still not enough hairspray in the world that will help on a windy day. At least in fall & winter I can wear hats more easily without getting so hot. If I wear a hat in summer I just sweat and my hair underneath is a frizzy mess when I take it off! We did buy a treadmill so I do use that at home. I haven't looked into wigs or hairpieces yet.

Comment by Pam on September 6, 2013 at 5:31pm

Sorry to hear Kath you have been feeling low - we all do at times I think. I have been feeling very depressed recently, as I realise that FFA has become a truly life-changing condition for me. I am an outdoors person who loves walking, cycling, swimming, horse riding, skiing and surfing, and all of these activities are difficult with wig wearing! I hate the look of myself with thinning hair and no eyebrows or lashes, and find it hard to be positive about a future of wigs and hairpieces. I am going to see a guy this week who has been recommended to me who fits hairpieces and wigs. Although I have just bought one, I am still feeling so unsure about the whole thing, and lack the confidence to wear it out and about. I am scared it looks too noticeablely like a wig, and that it feels hot, and may dislodge. I also want advice about how to cope with wearing hats and helmets with wigs if I want to keep up my riding and cycling. The horror of My Hair has begun to dominate my entire life!

Comment by Celia on September 6, 2013 at 5:26pm

Karen, what was your eye check like ?

Comment by KarenGinny - Iowa, US on September 6, 2013 at 5:18pm

Linda, Yes I'm having my eyes checked and he will do blood work too. I'm 48 and pre-menopausal so pregnancy is not an issue. I'm also on meds for thyroid and blood pressure but he said would be okay to take them together. So after being on it for a year, have you noticed it helping with the hair loss or inflammation? It seems like with most people it's hard to tell if the meds are working since it seems like the hair will fall out anyway, and burn out when it wants to. But maybe if I had been on this earlier then my hair wouldn't look so bad now.

Comment by Celia on September 6, 2013 at 5:16pm

Linda - what did your eye check up comprise of ? I just read from a card to the nurse - was that the same for you and all others out there ?

Comment by Celia on September 6, 2013 at 5:12pm

Kath - thinking about you and hoping you can rally round and get positive again - sent you a message but not sure if you will have got it ! X

Comment by Chrisy, MA USA on September 6, 2013 at 5:08pm

April, my dermatologist adviced me to start taking plaquenil but stop it right away if pregnant. I've been using it for six months now and I'm not sure if it works for me. The progression is slow so it's hard to tell. I had my annual gynecologist visit last month and she told me that she has some pregnant patients who still taking plaquenil while pregnant. Of course their health issues are much more serious. I think she mentioned lupus. She also advised me to stop plaquenil if I get pregnant. Who told you that plaquenil is BAD if you are planning to get pregnant??

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