Plaquenil + curls

oddityofwingsoddityofwings Posts: 1,261Registered Users
Has anyone here ever taken Plaquenil, whether for malaria, lupus, or any of the other things it's good for? I've recently been told I have either urticarial vasculitis or skin lupus (just had the skin biopsy to find out which - ouch!). The treatment for both is often Plaquenil. I've read that it can cause hair changes - colour, texture, and changing hair from curly to straight and vice-versa. From what my doctor's said and from what a friend currently taking it for lupus said, the side-effects are extremely rare and mostly only occur in people taking it really long-term, but my curls! I don't want to lose them! I wouldn't mind them being slightly looser - but to go back to being straight-haired? Yikes.

Anyone here ever taken it? Did it do anything to your hair (or anything else for that matter)?
3b/c. Fine, med-high porosity, normal elasticity. Hair loves oils in summer, protein in winter. Constantly battling the hard water monster.

Favourites:love5::
CJ Curl Theory, Curl Rehab, Smoothing, Curl Fix, Daily Fix, CCCC, CIAB, CQ, SSCC, MC shampoo, Inecto Pure Coconut Oil, CP luscious curl creme (summer), DB Pumpkin Seed (summer), FD/MT, JCWDT, JCTS

American literature PhD student in the UK... :study:

Comments

  • crimsonshedemoncrimsonshedemon Posts: 2,098Registered Users
    I've been on Plaquenil for about 10 years. I haven't noticed any hair changes.
    I have lupus and do lose hair from that but the dermatologist said as long as my scalp doesn't scar, the hair will grow back.

    Plaquenil is one of the mildest drugs used for lupus.
    The current doses are much lower than in the past. In the past, it was common for a woman to take 800mg... now the common dose is 400mg a day.
    Be aware that Plaquenil can take up to 6 months to start working.
    Before you start it tho, be sure to see an ophthalmologist(not optometrist) for a baseline exam and then a re-check ever 6 months.
    For more info on DLE- discoid lupus, go to www.lupus.org
  • oddityofwingsoddityofwings Posts: 1,261Registered Users
    I'm reasonably sure I don't have skin lupus - I have none of the other symptoms (though I suppose it could be presenting abnormally) - I'm far more likely to have urticarial vasculitis. However, you make a good point - I do need to be sure to get the eye exam early on and then get another one in six months. My allergist said as much to me when she originally prescribed it to me a few years ago (I never filled the prescription - I wanted to try just antihistamines), but it always bears repeating. :-)
    3b/c. Fine, med-high porosity, normal elasticity. Hair loves oils in summer, protein in winter. Constantly battling the hard water monster.

    Favourites:love5::
    CJ Curl Theory, Curl Rehab, Smoothing, Curl Fix, Daily Fix, CCCC, CIAB, CQ, SSCC, MC shampoo, Inecto Pure Coconut Oil, CP luscious curl creme (summer), DB Pumpkin Seed (summer), FD/MT, JCWDT, JCTS

    American literature PhD student in the UK... :study:
  • crimsonshedemoncrimsonshedemon Posts: 2,098Registered Users
    I'm reasonably sure I don't have skin lupus - I have none of the other symptoms (though I suppose it could be presenting abnormally)

    What other symptoms? Discoid lupus can just be the skin lesions and nothing else. In fact, that's usually the way it is.

    "Most individuals with discoid lupus will only develop skin manifestations, but some patients will also present symptoms of systemic lupus. Discoid lupus may occur in patients with systemic lupus erythematosus."
    However, you make a good point - I do need to be sure to get the eye exam early on and then get another one in six months. My allergist said as much to me when she originally prescribed it to me a few years ago (I never filled the prescription - I wanted to try just antihistamines), but it always bears repeating. :-)

    Yes, the eye exam is really important. My rheumy made me have the eye exam before he wrote the prescription.
    Plaquenil is a serious drug for many reasons. Anything that affects your immune is serious. =)

    By any chance did you try H2 blockers (tagament, zantac)? They're a treatment for urticarial vasculitis. And of course, corticosteroids.
    Hopefully you get some answers soon.
    Nicole
  • acemommy3acemommy3 Posts: 3Registered Users
    :flower:I too have lupus and have taken plaquenil for 12 years. I agree with the previous post. I have noticed no changes in my natural curl or texture other than the thinning related to the disease process itself. I also have found that stress and over processing tend to aggrivate the thinning as well so probably the less you worry or fret the better:)! i wish you the best and encourage you to read up and research; whatever the diagnosis. Educating yourself is very important.
  • oddityofwingsoddityofwings Posts: 1,261Registered Users
    I'm reasonably sure I don't have skin lupus - I have none of the other symptoms (though I suppose it could be presenting abnormally)

    What other symptoms? Discoid lupus can just be the skin lesions and nothing else. In fact, that's usually the way it is.

    "Most individuals with discoid lupus will only develop skin manifestations, but some patients will also present symptoms of systemic lupus. Discoid lupus may occur in patients with systemic lupus erythematosus."


    My rash itches - severely and painfully at times, and presents with angiodemia more often than not. Skin lupus rarely itches, and normally doesn't swell quite the way my skin does. Urticarial vasculitis, however, does both. :-) Skin lupus is often also photosensitive, and aside from tending to burn rather than tan, I've never had any problems with my rash coming out if I'm exposed to sunlight. I've read that SLE can cause urticarial vasculitis, but I'd be very surprised if it was that - I've had this since I was 6 months old. I know it's not unheard of for people with lupus to have symptoms very early on and be diagnosed properly later in life, but I do know it's very rare to start THAT early. And I'm thinking rare presentation plus early symptoms equals unlikely - but we'll see what the skin biopsy says.
    By any chance did you try H2 blockers (tagament, zantac)? They're a treatment for urticarial vasculitis. And of course, corticosteroids.
    Hopefully you get some answers soon.
    Nicole

    Yup, been taking Zantac at twice a normal dose for 3 years on top of Zyrtec and Claratin daily. They generally take the edge off, but sometimes it feels like they're just making me sleepy rather than doing me any good. I've not been on steroids since I was younger - not sure why they've not bothered to try me on them again.
    3b/c. Fine, med-high porosity, normal elasticity. Hair loves oils in summer, protein in winter. Constantly battling the hard water monster.

    Favourites:love5::
    CJ Curl Theory, Curl Rehab, Smoothing, Curl Fix, Daily Fix, CCCC, CIAB, CQ, SSCC, MC shampoo, Inecto Pure Coconut Oil, CP luscious curl creme (summer), DB Pumpkin Seed (summer), FD/MT, JCWDT, JCTS

    American literature PhD student in the UK... :study:
  • crimsonshedemoncrimsonshedemon Posts: 2,098Registered Users
    If you don't have symptoms of lupus, you don't have systemic lupus. Symptoms are a huge part of the diagnosis since there's no definitive bloodwork to diagnose.

    I'm so sorry you have to deal with this... for a while, I was itching as a side effect from some medication and it was HORRIBLE. I discovered that applying ice packs directly to my skin would ease the itching but that in itself wasn't comfortable. LOL

    Bummer the antihistamines and H2 blocker didn't work.
    http://emedicine.medscape.com/article/1085087-treatment
    They list colcochine (for gout), the nsaid Indocin, Atarax a H1 blocker, Sulfone for leprosy. Several other medications are listed also. Something to ask your doctor about if they haven't already discussed ' em with you.
    Take care
    Nicole
  • oddityofwingsoddityofwings Posts: 1,261Registered Users
    Yeah - I've had this for 4 years pretty much non-stop. Supposedly with type three allergic reactions (which is what UV is), antihistamines (H1/H2 combos) only sometimes help with the itching. I often just have to take a cool shower, apply some lotion (dry skin makes itchy skin that much worse), and hope for the best. We'll have to see what my doctor says when the biopsy result comes back - I would like to knock this stuff out of my system if at all possible. It gets in the way of life. It went away for 10 years once, it can go away permanently if we can only figure out how to beat it. :-)
    3b/c. Fine, med-high porosity, normal elasticity. Hair loves oils in summer, protein in winter. Constantly battling the hard water monster.

    Favourites:love5::
    CJ Curl Theory, Curl Rehab, Smoothing, Curl Fix, Daily Fix, CCCC, CIAB, CQ, SSCC, MC shampoo, Inecto Pure Coconut Oil, CP luscious curl creme (summer), DB Pumpkin Seed (summer), FD/MT, JCWDT, JCTS

    American literature PhD student in the UK... :study:

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