Hydroxychloroquine

[Gemllo]

I've just been diagnosed with discoid lupus the consultant has advised that I start taking this medication. Has anyone any experience with this ??

[Hidden]

Hello Gemllo,

I have DLE, SLE, lupus nephritis (class5), hypothyroidism, type 1 diabetes, alopecia etc😢 and have been prescribed and using hydroxychloroquine for around 4 years. (Not a competition!😥). Sadly other lupus sufferers may have even more diagnoses 😰.

It is however a toxic drug although some will say that the risks are low.🤔 However you should have eye screening by a specialist ophthalmologist prior to use eg for existing? retinopathy etc. My GP has requested one for myself next month.👍 We both agree that I cut my dose to 200mg/day from 400mg/day (usual adult dosage?).

I’ve done some research about the latest recommendations from NICE and BNF independent and reliable website info:

“...

Indications and dose

Active rheumatoid arthritis (administered on expert advice),

Systemic and discoid lupus erythematosus (administered on expert advice),

Dermatological conditions caused or aggravated by sunlight (administered on expert advice)

By mouth

For Adult

200–400 mg daily, daily maximum dose to be based on ideal body-weight; maximum 6.5 mg/kg per day.

Cautions

Acute porphyrias ; diabetes (may lower blood glucose); elderly; G6PD deficiency; may aggravate myasthenia gravis; may exacerbate psoriasis; neurological disorders (especially in those with a history of epilepsy—may lower seizure threshold); severe gastro-intestinal disorders

Cautions, further information

Screening for retinopathy

A review group convened by the Royal College of Ophthalmologists has updated guidelines on screening for chloroquine and hydroxychloroquine retinopathy (Hydroxychloroquine and Chloroquine Retinopathy: Recommendations on Screening 2018). Recent data have highlighted that hydroxychloroquine retinopathy is more common than previously reported.

Screening recommendations for hydroxychloroquine:

All patients planning to be on long-term treatment should receive a baseline examination (including fundus photography and spectral domain optical coherence tomography) within 6–12 months of treatment initiation;

Annual screening is recommended in all patients who have taken hydroxychloroquine for greater than 5 years;

Annual screening may be commenced before 5 years of treatment if additional risk factors for retinal toxicity exist, such as concomitant tamoxifen therapy, impaired renal function (eGFR less than 60 mL/minute/1.73 m2) or high-dose therapy (greater than 5 mg/kg/day of hydroxychloroquine sulfate).

There is of course much more info about this drug viz other lupus patients’ personal experiences...on this website.

Keep well.

Trust this helps?

Regards,

Alexa

[Gemllo in reply to Hidden]

Hi thank you so much for this really appreciate it x

[maggielee]

Hi - Alexia has covered the subject quite thoroughly.. Hydrox helped clear & supress my SCLE which flared & diagnosed as I had skin issues as well as achy legs etc. I have been on hydroxy for over 4 years & annually get my eyes tested.

I have also been diagnosed with sjogrens & due to further health issues also take mycophenolate...

You can search on heathunlocked for hydroxy as there has been numerous discussions about such as taking with or after food, etc. Hope it helps you, will take sometime to build up in your system to make a difference...

ML

[Gemllo in reply to maggielee]

Hi thanks for this I really appreciate it x

[Piscesdreamer]

I take generic Plaquenil and it has been a game changer for me. Definitely reduced flare ups, pain, and fatigue

[Hamptons]

I have taken it for 10 years. Changed my life -recently came off it and all went wrong. Back in it now and life is great again. I have 6 month eye checks in case of issues. But, could not do what I do without it.

[Krazykat26]

It's usually the first med to be prescribed n you've got good advice about it

What I would add is that when I first started it in 2017 I did get heartburn n it says on the pack that u can't take heartburn remedies for four hours before or after taking it..the solution I found was to take my meds with goats milk..that sorted it!!