Hydroxychloroquine and hair loss

[SunshineT]

Sorry could not upload my picture earlier with other post, this from having thinning hair to that in about 2 month

[Hidden]

Yikes, i’m Sorry. After years of fighting meds (refusing them) i’m going on Hydroxychloroquine tomorrow morning. Do we women experience this as well?

Have you tried Biotin supplements, or minoxidil? Some people do a ‘minoxidil cocktail’ for hair loss. They use the minoxidil, Biotin supplements, and a product called Ovation Hair. Many swear by it, though tbh Idk of anyone who has used it for hair loss related to Hydroxychloroquine.

My best to you. I hope you find a solution. 🙏

[SunshineT in reply to Hidden]

Hello

Thank you so much for you reply, I use to take biotin but haven't for a while so I will try getting those supplements back and will see.I have heard of ovation hair but never tried it but I will in the future because I have just started a hair treatment ( laser and prp injection) so I don't want to mix everything at same time. Let see how this goes first.

Sorry you have to start on medicine, hope it all goes well for you.

Good luck

[Hidden in reply to SunshineT]

Thank you.

I put off the meds for a long time. I’m affecting my poor husband’s quality of life too. It’s a light dose I’m starting on, but my fear is that once the body adjusts, it will want a stronger dose, then a stronger dose, until I’m in the danger zone.

My best to you. I bet the laser treatments work. That’s awesome that you can do that!! Best wishes, BK

[SunshineT in reply to Hidden]

Hi Again

Just came across this Dr Amy Myers , she wrote a book the "Autommuine Solution" she apparently improved/cured

herself from a Autommuine , have a look on you tube , you might find some good tips before you go back on the meds.

[Paul_Howard Partner LUPUS UK in reply to SunshineT]

Hi SunshineT ,

I would urge people to be very cautious about any claims of 'curing' lupus. At present there is no cure for lupus, however there are a lot of people out there who will attempt to make money by selling their books, fad diets, supplements or complementary therapies. As none of us here are medical professionals it is not appropriate to give advice to other members about their medication - this is for discussion with their physician.

[SunshineT in reply to Paul_Howard]

Ok that is fine

Thanks

[Hidden in reply to SunshineT]

Thank you. I actually read her book last year and strickedly followed her 30 day (was it 30 days?) protocol. I have a friend who did it. He lost 40lbs because of it (not in a month’s time) and it helped him, though it didn’t cure him. It really didn’t do anything for me that I could notice. My friend’s problem isn’t as intense to begin with. I think Amy Myer’s claim of ‘cure’ might be a bit much? Maybe put it into remission for her? But I don’t think there has been a person cured yet from autoimmune. But what do I know?🤷🏻‍♀️

Anyway, I think her protocol can’t hurt, and I’ve continued to use a lot of the supplements she suggests in her book.

Another good book is ‘The Lupus Cookbook’ from Ana Reisdorf. It gives a lot of explanations that helped me, and it’s full of recipes. Most of them very good (I honestly didn’t care for a few of them, and haven’t tried them all. But am glad I bought it). The Coconut and Turmeric Salmon is my favorite so far. Easy to make, yet tastes like a gourmet meal.

Did you do Dr Myers’ protocol? If so, how’d it work for you? I hope things go better for you. It’s really a rough thing to go through.

[SunshineT in reply to Hidden]

No not yet but I will buy the book ,

[Hidden in reply to SunshineT]

I hope, like my friend, it will help you. I certainly don’t think it can hurt?

[Paul_Howard Partner LUPUS UK in reply to Hidden]

Hi Hidden ,

In most cases hydroxychloroquine actually helps to reduce hair loss and it is incredibly rare for it to be a side effect of the medication. Hydroxychloroquine is generally well-tolerated with few or no side effects and is considered the safest of lupus treatments.

In most people with lupus who are taking hydroxychloroquine, any hair loss they may experience is most likely to be caused by the lupus itself.

For more information and advice about hair loss in lupus, please take a look at our article here - lupusuk.org.uk/coping-with-...

[Hidden in reply to Paul_Howard]

Ahhh, thank you for that information. Makes me feel better about starting this. Thank you.

[Lisalou19]

Yikes

I have not seen anyone report hair loss as a side affect to the hydroQ.

Are you currently under. A dermatologist?

It maybe worth someone looking at your scalp to determine if there’s an underlying cause.

Xx

[SunshineT in reply to Lisalou19]

Hello

Thanks for your reply, yes I see a dermatologist. 1 year ago I start losing my hair it was a couple of bald patch so my gp refer me to one, at the time they 've said I have alopecia and my hair loss was due to stress. They did not give anything for it, so I went private and start a hair treatment ( laser and prp injection) and that work very well . At the same period my dermatologist ask me if I wanted to do a scalp biopsy and I did . Now from the time I was waiting for my byopsie result that was done in may and the summer(july) my hair started falling very fast, and the only thing that chang in my life at the time was me starting in hydroxychloroquine about 6month prior to the hair loss and also some exposure to the sun has I was in the Caribbean for 3 weeks ( I didn't know at the time how bad exposure to the sun could be). So Can it be the sun or the tablets or else?

So I went back to see my dermothologist to find out if they had my byopsie result, and they told me it was Duscoid lupus.

This is the story

Thanks

[Izzy123gym]

I lost 40% of my hair while on Hydroxychloroquine; I had a massive, allergic

reaction! It is a well known side effect apparently!

[SunshineT in reply to Izzy123gym]

Hello

Thank you for your reply , sorry to hear you loss your hair . How are you doing now ? Did your hair grow back? Did you stop hydroxychloroquine? What else did they give you?

I was almost thinking that I was one of the 1% people thinking hydroxychloroquine can cause hair loss 🤔.

Thanks so much

[Izzy123gym]

Hydroxychloroquine was discontinued after 3 months! I tolerated the side effects for too long; l developed severe skin flushing and horrendous Urticaria.

My hair has grown back BUT it's a totally different texture now. It's very, very fine and fragile; I've lost masses of volume which I find very frustrating!

I have not been on ANY drugs since this episode; it took almost a year for the Urticaria to disappear and hair regrowth to commence!

My Rheumatologist wants me to try Methoxetrate but, quite honestly, I 'm reluctant to try any drug which has hair loss as a common side effect.

Good luck; I hope things work out for you, SunshineT!