Been on hydroxychloroquine 3yrs - Hughes Syndrome A...

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Been on hydroxychloroquine 3yrs

catlove123 profile image
12 Replies

I have been taking hydroxychloroquine for 3 years now. It started about 6 months ago Me having dark patches on my neck. Now I have dark patches on my face; the side and chin area. I'm asking if anyone has experienced this unfortunate problem, and what suggestions can be given. I have a dermatologist that I no longer see because he would attribute all my skin issues to lupus having very little to no recourse.

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HollyHeski profile image
HollyHeskiAdministrator

Hi, I've been on Hydroxychloroquine now for over 20 years and have various skin issues which I blame the Hydroxychloroquine or even my Sjrogens! But not darkening areas,if you are concerned I would try and get to see a skin specialist or even get your GP to check?If you can try getting pictures for evidence of it getting worse - sometimes the specialist can just look at these too without seeing you.

lupus-support1 profile image
lupus-support1Administrator

ncbi.nlm.nih.gov/pmc/articl....

casereports.bmj.com/content...

sciencedirect.com/science/a...

dermnetnz.org/topics/drug-i...

researchgate.net/publicatio...

journals.sagepub.com/doi/ab...

As you can see hyperpigmentation using hydroxychloroquine isn’t rare.

I think a trip to a dermatologist may be advisable.

With good wishes,

Ros

Mermaidatheart profile image
Mermaidatheart

I would suggest visiting the dermotologist. I have various dark patches on my face and arms that I have had before I started taking hydroxychloroquine. Mine is called Melasma. Melasma is a skin condition that causes patches and spots, usually on the face, which are darker than your natural skin tone. Melasma happens because of overproduction of the cells that make the color of your skin.

MaryF profile image
MaryFAdministrator

Hi, not had this, as I am severely allergic to Plaquenil and similar, but a friend on it had this, but also it transpired a problem with B12 which can also cause that, it was deemed to be a mixture of both. MaryF

StriatedCaracara profile image
StriatedCaracara in reply toMaryF

Sorry, MaryF was the issue also vit B12 deficiency?

catlove123 profile image
catlove123 in reply toStriatedCaracara

So not clear are you saying "lack of vitamin B 12, or too much.

StriatedCaracara profile image
StriatedCaracara in reply tocatlove123

Just edited my reply to Mary, to ask Mary as I was not sure about 'how any change in vit B12', could affect skin colour.

Niacin / Nicotinic acid, (also a B complex vitamin) maybe as lack results in Pellegra, where areas exposed to air and light get dark red colouration, which dry and become brown coloured...no grey colouration though.

By the way Catlove, I have been on hydroxychloroquine 15 months and am noticing my shins have grey tinge.

I recently increased from 2000mg to 300mg per day.

MaryF profile image
MaryFAdministrator in reply tocatlove123

For my friend it was a lack of B12, many people with Hughes Syndrome/APS have a Thyroid problem, and with thyroid problems, a link with low B12 is not unusual, add in gluten intolerance and it seems to cause a real problem for some, I am one of those. I did not get vitiligo, but I did start having dark patches inside my upper arms which have now faded over the years: Many drugs can also stop you absorbing B12. ncbi.nlm.nih.gov/pmc/articl...

glutenfreesociety.org/crash...

MaryF

MaryF profile image
MaryFAdministrator in reply toStriatedCaracara

It turned out that she had Pernicious Anaemia, she started with darker hyper pigmented patches and then later on also had Vitiligo. As far as I know they are still on Plaquenil, but they are not on this forum MaryF

LindaMorrell profile image
LindaMorrell

yes I had exactly the same after a few months of using it

I have. Lupus APS and Multiple sclerosis. Sounds horrendous but I am active and live a good life around many issues.

I also started to get effected vision issues when using it. I took Plaquinil

I stopped taking it. My immunologist told me it is used as a modulator for Lupus. When the dark patches and vision issues started I realised this was not a drug for me.

Many years on Sadly I have issues of bruising because I can not stabilise my INR levels, and have to take Aspirin and warfarin. So here I am with many dark patches big and small regardless. Though the bruises do go away Unlike the dark patches from Plaquinil. However once I stopped taking Plaquinil the dark patches soon went. I now class Plaquinil as a drug I am allergic to.

Try going on to the Lupus UK site you will read a lot more about hydroxychloroquine and similar drugs and their reactions.

Hope you find a solution.

catlove123 profile image
catlove123 in reply toLindaMorrell

thank you , your info was very helpful.

LindaMorrell profile image
LindaMorrell

I read this information online

Interesting reading

SKIN PIGMENTATION WITH HYDROXYCHLOROQUINE (PLAQUENIL)

June 03, 2018

Skin Hyperpigmentation with Hydroxychloroquine

Hydroxychloroquine (Plaquenil is a common trade name) is an anti-inflammatory oral medication that is commonly used to treat many autoimmune diseases. In the hair clinic, we use it for diseases such as lichen planopilaris, frontal fibrosing alopecia, pseudopelade and discoid lupus. A variety of side effects are possible and users need to understand the potential side effects before starting treatments. Today we'll focus on the side effects of skin pigmentation.

What does hydroxychlorqoune hyperpigmentation look like?

Skin pigmentation related to use of hydroxychloroquine starts out as a yellow brown to slate gray or black pigmentation on many areas of the body - especially the front of the shins but also the face, forearms, mouth mucosa (essentially hard palace and gingivae) and nail beds.

How common is it?

It is estimated to occur in 7-10 % of patients who use these medication. Unlike the hydroxychloroquine-related pigmentation changes that affect the eye (retinopathy), the skin pigmentation changes are not directly related to duration of use and can even develop in the first year. In one study of lupus patients, 17% developed pigmentation changes after the first year of use and 40 % had developed them by year 5.

Why does it occur?

Hydroxychloroquine (Plaquenil) stimulates the pigment producing cells in the skin called melanocytes. As a result, there is both hemosiderin (iron) and melanin accumulation in the dermis. The exact reasons why this phenomenon happens is not clear. However, trauma and bruising may faciliate the developement of pigmentation. This may be the reason why patients on blood thinners and anticoagulants appear to be at highest risk. In fact, most patients who go on to develop these pigment changes first notice that the appearance of pigmented lesions was preceded by the occurrence of a bruised like appearance. This has often been likened to a “bruise that did not disappear.”

How are the abnormal pigmented areas treated?

After stopping the drug, (if indeed possible to do so), some will improve and the pigment will fade to some degree over time in a large percentage. Most, however, do not completely improve. Lasers are currently being studied as a therapeutic option for a variety of pigmentation issues.

REFERENCE

Coulombs et al. CMAJ. 2017 Feb 6; 189(5): E212.

Jallouli et al. Hydroxychloroquine-Induced Pigmentation in Patients With Systemic Lupus Erythematous. A Case-Control Study. JAMA Dermatol. 2013;149(8):935-940. doi:10.1001/j

Dr. Jeff Donovan is a Canadian and US board certified dermatologist specializing exclusively in hair loss. To schedule a consultation, please call the Whistler office at 604.283.1887

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