Replies to This Discussion

Permalink Reply by cindy Babs on January 31, 2013 at 2:32pm

my daughter was on it for i think 6 months. no regrowth. no side effects. no change to vision which was checked regularly. don't remember dose.good luck! :)

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Permalink Reply by Pauline D on February 3, 2013 at 11:15am

Hi, I have tried Plaquenil. I found it was best to take it at night time as the side effects seem less during the day this way and the drowsiness will help you fall asleep!

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Permalink Reply by Katelyn on February 5, 2013 at 12:56pm

Thank you for the suggestion. After trying to take it twice a day as reccomended, I just can't work with the side affects. Took one before bed last night and slept just fine. Also didn't feel groggy when I woke up. Not sure is this will help me at all but I'd hate to say I didn't atleast try. Thanks again!

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Permalink Reply by Katelyn on February 6, 2013 at 12:12pm

That makes me so angry that they consider it cosmetic. Sometimes when my doctor rushes appointments I just want to scream at him, Imagine if you were losing your hair, now imagine you're a female in her early 20s! It's not just cosmetic, so much mental turmoil is involved as well. Ahhh, anyway, I have a group plan on Providence. Good luck to you :)

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Permalink Reply by Joseph Perry on February 16, 2013 at 5:15pm

I hate that too!!! i been getting shots for over a year.. im starting to think its more about getting you to come back and giving them money rather than them helping you get your hair back and never coming back to see them.. So frustrating! Wouldnt you think after a year they might suggest something else??? Idk what to do anymore, and im starting not to care, so much money waisted.
P.S. i heard that Targeted PUVA can help but it has mixed reviews and risks.

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Permalink Reply by Debs on February 16, 2013 at 8:41pm

Several of the ladies in a group I belong to on this site have been using planquenil for several months - frontal fibrosing alopecia group, please have a go at getting some advice from them on how to take this drug. I am seeing a new derm next week and hope to get this drug too. Good luck

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Permalink Reply by Rosie on February 19, 2013 at 3:53am

Hi Katelyn,
I'm a bit suspicious about all these medications as I am concerned about long term health effects. I decided to give Plaquenil a go though, and I have been on it for 2 weeks. You are supposed to have a blood test every month to check on your liver and kidneys as long term use can affect them. I was told also to keep an eye out for 'floaters' in my eyes, as Plaquenil can cause macular damage to your retinas. I'm only on a low dose, but now have a black line floating over my eye that I can see when I look at a computer screen. I have emailed my dermatologist but she's away on holiday, so I've stopped taking it for the moment. My eyes are too precious to risk ! I haven't heard from anyone that it has stopped hair loss, in fact I haven't heard of anything that really works with my condition. Some treatments slow the shedding. But then I have LPP causing scarring alopecia, so maybe that's different than the alopecia you have? Can't say I've noticed being more tired than usual though.
Good luck

Rosie x

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Permalink Reply by Katelyn on February 20, 2013 at 12:33pm

Rosie,

I am starting to agree with you. My derm basically told me I should get an eye exam once a year on this medication, and thats about it. I started taking it at night because the side effects(mostly dizziness), made it impossible to work during that day. However I feel like I'm noticing a difference in my eyesight. It's very possible this is all in my head but I don't really want to risk it. Too bad, I feel like it was actually helping with my hair loss :(

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Permalink Reply by Rosie on February 23, 2013 at 1:10pm

It's so hard isn't it Katelyn? Are you getting floaters or something else? I wish there was something that would just stop it, but I'm kind of getting my head around it now. I still occasionally get upset, but these days are getting much further apart and sometimes I even forget about it now !
Hope things go well for you...

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Permalink Reply by Katelyn on February 25, 2013 at 3:05pm

Rosie,

I wouldn't say that I have any more floaters than usual, which like you said I notice more when I'm on the computer(all day at work!). I generally have excelelnt eyesight(for now anyway), but I do have a history of migraines which always skew my vision. It's hard for me to tell if I feel my vision is a little wonky because of the headache the medicine causes sometimes, or if it really is affecting my eyes. I've gone a few days without and I feel fine. I'll see how my hair is affected. Depending on what happens I may give it another go and see if I still have the same headaches.

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Permalink Reply by a2rutherford on March 7, 2013 at 8:56pm

Hi,

I just started Plaquenil about 2 weeks ago. I take it in the morning with oatmeal, and no nausea so far, knock on wood. No dizziness. I started it over a weekend, just in case - and thank goodness I did - all the first weekend I had diarrhea...only for the first few days though. I switched from Monodox (doxyxylcine 2x per day) because even with food I was throwing up 2-3 times per week. Unfortunately, I hear it takes 1-2 months to notice any changes with Plaquenil, and stopping the Monodox the burning and intense itching returned. Last night I had to leave class, and this morning I could only make it through 1/2 the work day. Today my doc advised me to resume taking the Monodox (this time only 1x per day) along with the Plaquenil.

Definitely make sure you take Plaquenil with food, and I would advise you to take it once you've arrived at work/home, so you're not driving when/if you begin to feel unwell. That should help with any nausea/dizziness. Also, I'm very concerned about the risks to the eyes and liver - glaucoma runs in my family - so I would definitely recommend getting the baseline eye exam and following up periodically. Though I understand the problems are rare, their serious, and once you notice vision problems it may be too late.

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Permalink Reply by Katelyn on March 8, 2013 at 5:06pm

Hey ,

Thanks for your response and telling me about your experience. Luckily I live within walking distacne to work so not a problem when it comes to driving. However I tried everything. I would take it on a full stomach, not as bad, but still nauseous, sleepy and dizzy. So I started taking it only at night so I could sleep through the symptoms but I was still having headaches and trouble concentrating/focusing on my moniter at work. I decided to just stop taking it because I didn't feel like myself, not to mention macular degeneration runs in my family so no need to add to that. One thing I have noticed is most if not all shedding that isn't part of the natural cycle has stopped. I've been off plaquenil for about 2 weeks. Who knows if the meds for the short period of time haulted the inflmation/shedding or if my body had just naturally put a hault to it. anyway I wish you all the luck with this. Can I ask if you are taking the medication purely for the itching/burning sensation? Or are you also trying to reverese the effects of hairloss? I know that when my spots were active, oh my, they itched and tingle like no tomorrow, but I've noticed in times of regrowth they can also be somewhat itchy as well.

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