Hair Loss with SLE ?

[GodsGlory]

Does anyone have hair loss due when on Hydrochloroquine to treat SLE ?

[Paul_Howard Partner LUPUS UK]

Hi GodsGlory ,

How long have you been taking the hydroxychloroquine? Hair loss isn't generally considered to be caused by this medication (although I wouldn't say it isn't possible), but instead many consultants would think it more likely to be a symptom of active lupus.

Have you discussed this with your doctor?

We have an article about lupus and hair loss on our website with information, advice and personal experiences that you may find interesting - lupusuk.org.uk/coping-with-...

[Hidden]

Hi,

Difficult to say what specifically causes hair loss in lupus sufferers?

Reasonable to say that:

*Lupus itself can be the cause!😰 Defective immune system cells attacking healthy follicle cells mistakenly!

*Hair loss, hair depigmentation and skin, nail etc discolouration are all documented side effects (see BNF) of both hydroxychloroquine and chloroquine.

I have personally experienced all three.😰

Hair is actually an extension of the skin so in lupus eg DLE, SLE ones own lymphocytes are attacking/destroying the hair follicles that are in the skin.

Hence frequent dosage reviews are highly necessary by ones doctors. Note that corticosteroids can cause undue/unwanted hairiness in unwanted places?

Can “loopies” ever win?😰

Keep positive!

X

[Jumper99]

I know a lady in her 80s now who was given hydroxychloroquine to treat her lupus many years ago. She and another lady in hospital because of the lupus both thought their hair loss was due to the HCQ which she tells me was a new drug back then. She lost over half her hair but at least she went into complete remission from her lupus when in her 50s.

I have a friend with APS who has lost a lot of hair and it’s one of the reasons they are taking her off HCQ as it might be a cause.

These autoimmune diseases are such a muddle for us! We can’t even tell whether it’s the disease or the treatment giving us symptoms.

[GERY]

Hi. I have had lupus since my twenties & I am now 76. I had patches of hair loss as big as 10 pence pieces with horrible continuous itching & wasn't prescribed HCQ until I was 50 so in my case the HCQ did not cause the hair loss. Good luck for the future & try to avoid stress

[nanleighh]

Hi GodsGlory, Hydroxychloroquine actually made my hair thicker. Lupus itself is more than likely the culprit for hair loss. I hope it stops soon. I remember the dismay from handfuls of hair coming out. Take care, Nan