I was wondering if anyone could tell me their experience of Hydroxychloroquine. I'm due to start taking it at the end of the month and I just wanted to know how others have found it.
I'm also quite interested to know if anyone has experienced acne/worsening acne since taking the drug? If there are any changes in hair condition? And if it helped with RD?
I have very bad acne and the thought of it becoming worse upsets me. I'm also quite attached to my hair. Obviously I know that treating RD comes first, but as you can probably tell I'm not at the acceptance stage yet. I'm fact I'm probably still in the shocked and denial stage.
Any replies are greatly appreciated.
Much love. Sab
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Hiya Sabrina! It was my first DMARD. I didn't have any hair loss or skin problems on it, though did have frequent headaches which I guess is caused by the quinine. I did have an eye check before starting treatment & regularly whilst on it, though I understand here it's yearly. My Consultant arranged them & I just went when called. It can make you more susceptible to the sun though & made my eyes sensitive to bright sunlight so virtually lived in sunglasses during the day but that was when living in Spain.
It got my RD quite well controlled for about a year so hope you do well on it too.
Hey nomoreheels! How have you been? Thanks for the info, I'm expecting some side effects as my body adjusts but the thought of my acne getting worse has got me worrying.x
On the better side Sabrina, thanks for asking! Just back from hospital for the second day running, but not for me it was my he's turn! Meds are controlling RD, an increase of dose of new pain relief appears to be helping OA pain & headaches are easing so all's well there.
Best to be aware of any side effects with any new med but with HCQ sensitivity to sunlight is common & you'll likely find you'll need to increase whatever factor sunscreen you normally use. Conversely HCQ has also been used to treat porphyria cutanea tarda (photosensitivity) so go figure! If sunbathing check regularly to make sure you're not burning & try to avoid the sun at it's highest would be my advice.
I have been on it for about 10 months had a few headaches to begin with but they were sorted by reducing the dose. Haven't had any other side effects but I don't think it is doing much for me by itself. I had an eye check after going on it as it can cause eye problems and yes do not go in the sun without cover and sunblock, I found out the hard way no one told me. I live in Australia BTW.
I got very badly burnt driving the car, but I have fair skin here is a warning on the bottle here in Oz about sun and sunbeds. I have found I cannot even stand in the sun as I can feel myself burning. I would wear sunblock and cover up with long sleeves on Plaquenil skin cancer is so much worse.
Hi, I'm blessed with very good complexion. At 70, it' s the only bit that receives regular compliments, so I was dreading losing that singular asset from either hydroxychloroquine or methotrexate. Thankfully, neither drug affects my skin. In the hair department, I have lost ALL body hair. My head hair started to fall out until the Folic acid was increased to 6 days per week. Then it went , and still is very curly. On the whole, I am happy with it and I save a fortune on hairdressing.
If I were you, I would mention your concern about acne to your consultant. They might prescribe a short course of steroids, which would do miracles for both skin and joints.
hello Jora, am interested about the hair loss and MTX, as I too suffer from "armpit alopecia" etc., but I only take folic acid one day a week (two days before MTX. and I take 10mg, could you let me know what dosage your folic acid is as you mention taking it 6 days. I would love to get back some hair growth on my now non-existing fringe. thanks. Rita xx
Rita, were you prescribed (directed on your folic acid packet) 10mg each dose or 5mg per day? It's only that I've not heard of anyone taking double the norm in the UK, though the US do seem to advise only 1mg.
Btw I take 5mg each day except the day I inject & the hair loss is minimal now, but like Jo's it has changed texture & my normally straight hair is positively wavy at the back now, though not complaining!
Thank you nomoreheels, yes I was prescribed to take two 5mg folic acid two days before I take 12.5mg MTX. I have done this for last 20 odd years. I have no rheumy at moment, as they keep leaving, I do think I prefer the 5mg daily, but not on the MTX day. as this is an old prescribed dose, perhaps I need to check it out, as times do inprove the meds: and the dosages. once again cheers. Rita xx
That must be awful not having a regular Rheumy Rita no matter how long you've had RD!
Really to be sure you should check that 5mg x 6 would be ok, but how?? Do you not have a Rheumy nurse you could double check with? Or possibly if your GP is RD savvy you could run it by him?
yes my G.P has now transferred me to another hospital about 27 miles away, but I don't mind the travel My old hospital is only 17 miles but has not been able to keep their rheumy for over a year now. and I found it hard work to keep seeing different locums, who quite frankly did not know all my history, which is extensive, as I had RD when I was 30 years old and am now an oldie at 75 years old. ho. hum xx
Well it's worth the travel if you see the same Rheumy each time isn't it. You must have spent a good part of each appointment going through your history. I was really fortunate when living abroad as I saw the same Consultant every 3 months & it seems I'm fortunate seeing the same Rheumy once a year & a Registrar in between here!
I hope you can up your dose of folic acid & keep reminding yourself age knows no bounds!
I know we're all prescribed different amounts, but it seems like a waste to be taking 10mg on one day. I'm taking 5mg 3x/week. None of my rheumies have said anything about taking it on MTX days, so I just take the folic acid Mon, Wed and Fri mornings and the MTX (10X 2.5 mg pills) Friday nights.
Oh, and I haven't noticed an issue with either hair loss or complexion. I don't know the amount, but I"m taking two pills of hydroxy (one in morning, one at night) 6 days/week.
But I've gained about 5 kg since I started the hydroxy and I don't love that. Appetite suppressor my ass! (Fat ass at that! LOL)
How odd, I've also known about weight loss when on HCQ but never heard of weight gain & but I did know it can alter metabolism. Have you questioned your Rheumy about it?
I take 5mg every day apart from Methotrexate day. So, 30mg pw. First, the falling out lessened, then the curls started. The hair is much drier, but I cope with that by using lashings of Agar oil . I really like my new hair, which is a small compensation! J
thank you to Jora and nomoreheels, I will now take this up with my G.P about the folic acid, even though he is loathe to change any meds: the hospital have prescribed, the fact that I am without a rheumy at moment may sway this. hopefully the right dosage of folic acid will help my hair. big hugs to all xx
Hiya I've been on this since April. It's done wonders for me. I too was nervous beforehand as i have ne'er been keen on prescription drugs. In the beginning I had slight nausea and I mean slight and this soon passed
I was on hydroxychloroquine for several years without any problems and it controlled my symptoms. My skin was excellent.
Unfortunately, I was persuaded to come off and go on MTX. After a few years of suffering the side effects, and with poor control I came off MTX and went back on hydroxychloroquine, only to have an allergic reaction. Such a shame!
I have hydradenitis supurativa (believed to be related to acne) and had absolutely no ill effects in relation to this from taking hydroxycholroquine. My only side effects were nausea which went after a few weeks and I have been left with light sensitivity (but that may be unrelated). I took it for 8 months so thats a fairly good guage of whether it would affect my skin condiiton. Hope that helps.
I have been on plaquenil and methotrexate since April and I haven't had any bad side effects. I was afraid at first but I have seen a great deal of improvement. Stay positive and let your doctor know right away if you have ANY complications. , ,
Don't feel guilty for wanting nice skin and hair we all want to look nice even if we feel rubbish. I was on hydroxychloraquin alongside methotrexate and folic acid for near on 3 years and never noticed any difference in my hair or skin. Both kept their good condition. I asked my hairdresser to let me know if she noticed a difference and she never did. Have you had any treatment for your acne, my granddaughters doc put her on a particular birth control pill that also helps acne, or would they clash with your rheumatoid treatments. X
Hi, I was put on Roaccutane twice for my acne. Coincidentally arthritis has been linked to taking roaccutane, wish is known that before I took it. I try to steer clear of birth control pills as they make me feel really depressed. I just try to control it with diet and a good skincare routine. Thanks for not making me feel like I'm a vain idiot! Did you take frolic acid with hydroxy? Does hydroxy make your hair fall out? Also did you gain any weight? Sorry for the questions!x
I take folic acid every day except methotrexate day. I've never had any hair loss at all I've been lucky really as I haven't had side effects with anything except sulphasolazine. I then started enbrel injections as the rheumatoid was still active and once I was established on that I came off hydroxychloraquin.
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