My dermatologist just prescribed Plaquenil (but I have the generic Hydroxychloroquine) 200mg.
How long do you usually take it, months years indefinately?
I have Discoid Lupus, and it's affecting my facial skin, scalp, and hair follicles. It gives me a rash on my chest when I get in the sun, which I usually avoid.
I'd like to hear anyone's experience with this. Thanks in advance!!
I'm also curious how you take it. I understand with food, and also to avoid alcohol. If I take it with a snack in the afternoon, is it safe to have a glass of wine with dinner 4 hours or so later?
Also, what about taking vitamins at the same time as taking this?
When I first took Hydroxychloroquine my rheumie recommended 6m, I didn’t think it made any difference, but I didn’t really understand what it was supposed to do & it didn’t give any pain relief, this was before it was classed as a DMARD. I’m back on it (200mg daily), it helps to reduce my itchy skin and a rash I used to get regularly appears less frequently & severe. Apart from the foul taste of Quinoric I haven’t noticed any difference from Plaquenil. I take it whenever I remember in a morning, with or without food but usually with coffee (very quick to avoid taste!)
My main concern is for my eyes, even though I have regular checks, there is a risk with long term use, and that I also take ibuprofen (pharmacist told me it’s from same ‘family’)
I have EDS, inflammatory arthritis, erythromelalgia, TMJ, OA
I’m also taking Duloxetine (for erythromelalgia) & paracetamol daily. Hope there’s something there that helps! Unfortunately for me there’s no rheumatologist in my area so I’m having to monitor myself. I’ve had more help from my optometrist & dentist than rheumatologist & GP. Good luck!
Thank you!
Hi I would ask your doctor to put on your prescription hydroxychloroquine from Zentiva this is the same as placqunil, I have sticky blood and found it worked within 2 weeks others it takes months, hope you feel better soon
Hi Biloxi
I have been on hydroxychloroquine for 2 years for SCLE..at first it gave me heartburn so I take mine with goats milk which solved that little problem. I'm on 400mgs a day so I have one in the morning n one in the evening..I have had a drink in the evening n I haven't had any adverse effects..just take it easy. Xx
Thanks for the helpful response!
Personally, it’s my wonder drug. Changed my life. When dosage was reduced earlier in the year I felt the difference immediately. But, you do need to monitor eyesight as can affect the retina and cause blurred vision.
See updated information from Paul at Lupus UK in pinned posts
Helped me tremendously. I take 200mg two times a day for the total of 400. Im taking it for 10 yrs. To me it helped joint pain, i never had your symptoms thou...and im sure u know that u will need to do yearly eye exam for a rare side effect that is only treatable if discovered in time, therefore the exam is needed even if u don't have eye issues... It is very rare so don't get turned off by it please.also take w food especially in the first several months.
No, you just need to be aware. Changed my life.
I have discoid lupus and exactly the same symptoms as you, nothing more. I was put on generic hydroxychloriquine 200mg in November 2018, then 400mg (200mg twice daily) since March 2019 and It has not caused me any problems. I am just praying that it will control my hair loss. After about 3 months I felt the loss was much less, however, I still had a rash on my scalp indicating my discoid lupus was still active, hence the increased dosage in March. I take it after breakfast and bedtime with a glass of water. It is not a problem to take and does not affect my health negatively. I am desperate not to lose my hair. The price I pay, is the fact that it could affect my sight. I am grateful for hydroxychloroquine.
Do you know if it's possible for the hair to grow back? I've lost little patches here and there.
Hi Biloxi I have a bald patch the size of 10p on the top of my scalp and bald patches along the hairline. Where the hair follicles are dead you will fin.d the area is smooth and shiny. Unfortunately the hair will not grow back in these areas, my dermatologist has confirmed this. But we can take care of the hair we still have, at my last appointment she suggested I try Regaine products.
I have been told my hair will not grow back. My hair loss is along the hairline and is smooth and shiny. I can only hope to arrest the hairloss through hydroxychloroqine. I have also been prescribed Dermovate scalp lotion once a day for 3 months.
One of the side effects of hydroxychloroquine is hair loss – with living with lupus are here, comes and goes.
I love it when I feel a little nubby’s coming back, it gives my hair just a little lift. But if I have a little bit of stress, there they go again.
Hearing loss, vision -Peripheral vision loss, etc- So we have to be careful, but it is still the best medicine for us living with Lupus In comparison to steroids, DMARDS, etc
hopkinslupus.org/lupus-trea...
Benlysta infusion or now at home injections has been pretty effective for many people living with Lupus too, and it came out in 2011. Nothing Texas and pans away totally, it just makes them easier to live with.
Hi! I have been on hydroxychloroquine for 2 years for Lupus SLE . My Rhumie says I can take 400 at one time most of the time with yogurt or fruit. It has helped me tremendously. I too had a drink or two and I haven’t had an reaction yet. It’s always good to ask your Dr specifics for the best outcome.
lupus.org/resources/protect...
Hopefully you are over “5.7 inches in height” because you were taking the highest dosage of 400 mg.
Rheumatologist use to think it was based upon weight, and that the weight would absorb the plaquenil but now They realize it is too much and it causes eye toxicity quicker, according to act apologist to do the study back in 2011. That is the new guideline for all rheumatologist, dermatologist and ophthalmologist.
5.7 ‘ height & over = 400 mg (2 pills)
5.0 1/2 - 5.6 1/2’ = 300 mg ( 1 1/2 pills a day)
5.0 ‘ & below = 200 mg. ( 1 pill)
And yes most people I know living with Lupus to find it “better to take it on a full stomach”, it can cause nausea in certain people.
But in all the people I know living with Lupus which is over 100, it is really rare to have stomach issues.
Some people have other reactions, and their body cannot tolerate it. But most people with lupus do tolerate it very well as long as it’s managed and given in the correct dosage.
I remember the longer we are on it and more susceptible we are to messing with our Peripheral vision. I know at least five -7 people that have had this problem if not more, and They have had to come off of Hydroxychloroquine . It is sad because pender Lupus symptoms do get worse.
Lastly, some people can only take the “original plaquenil version” and not the generic version of plaquenil/ Hydroxychloroquine. They have allergic reactions to the ingredients that they put in the generic version.
i am prescribed it as 400mgs once a day so have to take it after my biggest meal of the day as it makes me feel really sick. I do have have a drink and have not had any problems in this respect.
It is the best medicine and the easiest one on your body living with Lupus for as long as you have lupus. Just make sure that they are giving you the correct dosage. plaquenil: (generic Hydroxychloroquine ) is based upon “height and weight”, As they originally thought.
Especially for those of us who have been on it for 7 to 10 years or more, we are more subjected to eye toxicity.
That is why we get our eyes checked for our peripheral vision once a year minimum.
I have exactly your symptoms and have been on 200mg hydroxychloroquine for 3 years and really cannot tell whether it’s helping to reduce hair loss or not, but daren’t stop taking it now just in case it would be worse without. I take the hydroxy with lunch and have a glass of wine most evenings and haven’t noticed any detrimental effects. I’ve been on dermovate scalp application for the same length of time, although I have to stop fairly frequently as it makes my scalp feel like parchment. Actually I don’t think it works for me anyway, but there’s nothing else on offer and my dermatologist has signed me off. I now wash my hair in Dermol lotion. I know it sounds very odd, but it does soothe my sore scalp and ease the prickling sensation when flaring, which is just about all the time. I keep my hair very short now but the loss continues. I’m sure it’s worthwhile your trying what’s been recommended as it may work well for you and I really hope it does. (I use 50+spf to help control the rashes on the rest of my skin.). Good luck!
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