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Comment by Celia on October 16, 2013 at 10:38am

Welcome to the 101st person to log on to this site, but I'm not sure who you are ! I hope you find the contributions here helpful. Best wishes !

Comment by Annie on October 16, 2013 at 10:19am

Very wise advise, Alice. Thank you. I'm sure that it would be much healthier emotionally if I could just take a break from thinking about ways to manage my ffa.

Comment by PamW San Diego, CA, USA on October 15, 2013 at 9:32pm

Karen, when I started Plaquenil (generic) I itched like a crazy person, especially my hands and feet. I told my dermatologist right away and she said that it was a side effect of the drug and that I should try to work through it to see if it subsided. She really didn't want me to stop taking the drug. She suggested an antihistamine such as Zyrtec during the day and Benadryl at night. Perhaps that would help your rash. Costco sells a generic Zyrtec that is very inexpensive compared to the brand name.

Comment by Alice on October 15, 2013 at 8:16pm

Anne,a very wise Chinese physician gave me some good advice years ago, but it took me a long time to understand what he was saying. When I complained that I didn't understand why I wasn't getting any better when I was trying so hard, he responded, "Perhaps you should try softer." It works for me!

Comment by Annie on October 15, 2013 at 4:04pm

Alice, thanks for the yoga nudge. You must have read my mind. I was just thinking I need to get back to yoga. I have a couple DVDs that are so relaxing I sometimes fall asleep at the end, but I usually choose a fat-burning workout instead. I think slowing down is exactly what I need. My life has been so busy lately that I go until I crash instead of taking time to relax. I don't think I'll get control of this ghastly disease until I start nurturing myself.

Comment by Brenda, IL US on October 15, 2013 at 2:56pm

KarenGinny don't give up on plaquenil. Some generics cause a rash and others don't. When i was first prescribed it in 2010 for lupus i had a full body rash within two weeks. I saw a new doctor in 2011 and he said to try another generic or use the original plaquenil. I haven't had a rash since.

Comment by Alice on October 15, 2013 at 2:54pm

Anne, I swear by yoga classes for reducing stress and anxiety. I've been going twice a week for about 9 years. Its very affordsble with a membership at my local Y. It has also helped me with acceptance and an body image issues in general. The rooms are usually darkened, which is nice if you are worried about your hairline showing.

Comment by Annie on October 15, 2013 at 1:14pm

KarenGinny,
I'm sorry to hear about your problems with Plaquenil. I know that some ladies are taking the antibiotic, Doxycycline, instead of Plaquenil for the inflammation. Perhaps that would work better for you.

Comment by KarenGinny - Iowa, US on October 15, 2013 at 11:20am

Hello and welcome to the new ladies here. I just wanted to give an update on my doctor's visits. I saw a new dermatologist a while ago and after getting my old derm's records he prescribed Plaquenil for me to take twice a day and see him in a month. I started it on October 1 and on the 9th I noticed a red rash starting on my legs, thighs, back and stomach. It was itchy but not horrible, just mostly irritating. I have had hives in the past that were much worse, requiring a cortisone shot. After the first day I suspected the new RX since I haven't done anything else different and called my Dr, who advised me to stop taking it and take an anti-histamine - "allegra" & come to my appointment I have scheduled on the 29th. I still have the rash, but it is slowly going away. So now I can't take the plaquenil and I don't know what other options I will have to stop my FFA. I've lost a great deal of hair in the past 2 years and though it seems to have stopped, I still have a lot of hair in the drain when I wash it and struggle with making the hair I have left look good. I still have a very itchy irritated scalp and use a dandruff shampoo Neutrogena t-gel, to try to keep it under control. Has anyone else had a bad reaction to Plaquenil?

Comment by Annie on October 15, 2013 at 10:56am

Hi All,
I had my three-month apt with my derm yesterday. I've been on Plaquenil for almost four months now. I was concerned since I had a flareup in September after taking it for two months, afraid that it wasn't helping. The doctor said that the ffa is a little more active than it was three months ago, but I had very little redness & no inflammation at that visit. He thought perhaps the stress from the death of family member might have caused the flare-up, but he said that he feels it would have been much worse it I hadn't been taking the Plaquenil. He said that I should call his office immediately to schedule an appt if I feel like I'm having another flare-up so he could prescribe an oral steroid or antibiotics to lessen the length & severity. I was not aware this was an option, so I thought I might share it with you. He prescribed a different topical steroid since the Clobetesol has been irritating my scalp. I don't remember what it's called, but will let you know what it is as soon as I pick it up at the pharmacy. I asked if I needed an antibiotic as well as the Placquenil, but he doesn't want to overload my system with drugs at this time. I have another three-month prescription for Plaquenil and will go back in January unless I have another flare-up. He said I need to find an outlet for stress to prevent another flare-up. I definitely need to work on that since the most stressful months are coming up with the holiday season.

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