I've been on Plaquenil for 2 months now but I worked my way up slowly and have only been at the full 200mg dose for 1 month. Somewhere around 3 weeks ago I started noticing a big increase in hair shedding. The last few days I've started to see that I have developed very noticeable scraggly-looking thin spots around my temples and hairline. My eyebrows, eyelashes, and body hair have not changed.
I called my rheumatologist, who left a message and told me to get off the Plaquenil for a month and then start over very slowly. I'm not sure how I feel about that. This is actually the second time I've been on Plaquenil. In 2015 I was on 200mg for about 3 months and had no hair loss, but I developed gastritis and thought my medications were the cause so I dropped them. I hadn't thought I was feeling any better on it but felt horrible after quitting, and have had really obvious disease progression since that point. I'm hesitant to repeat one of the worst mistakes of my life.
This is also not the first time I've lost a significant amount of hair in this same pattern of thinning around the temples and hairline, and in fact the hair there has never grown back to full thickness so hair loss is a lot quicker to show up. I have a diagnosis of androgenetic alopecia but it has always seemed to fall out and grow back in in sync with health problems- usually my thyroid but it has also happened with low sex hormones and ferritin. I had the full 'hair loss' panel done recently and nothing looked too far out of the ordinary- thyroid is low as always but not low enough that anyone will adjust my Armour dosage. It's definitely possible that it's just a new phase of the alopecia but the timing of the Plaquenil gives me pause.
So I have to ask: if you were in my shoes, what would you do? Quit the Plaquenil and have to start over, or load up on biotin and stick it out? I hate feeling sick but I have to admit I find hair loss to be demoralizing and weirdly traumatic. I'm calling the rheum back tomorrow again to discuss it with her more fully, but given my history I'm feeling really conflicted and was hoping to get some other viewpoints. Thanks!
Eina,
I am having the same issue. I have been on Plaquenil since around 2013. I have at least a 1.5-2 " size round glob of hair that comes out each morning in my shower. I am getting ready to start the low dose Naltrexone on the 21st. I have high hopes for it. I am in the process of tapering down my prednisone and will be doing the same for the Plaquenil. Fortunately, I have a lot of hair and it is not super noticeable (that I know of) yet.
Best of luck to you.
Take Care.
SjoDry
Plaquenil caused hair loss for me after just a few days. The rheumy had me stop it as he thought it was causing scalp inflammation. When I was off the med for a couple of days, the shedding quit as did the scalp discomfort. That said I have been dealing with a shed lately that has responded to thyroid meds and all of my doctors said you don't loose hair from subclinical thyroid issues - they were wrong. Ho[ping you can get answers soon.
It might taper off....If you were feeling better taking it, I would rather feel better and have no hair..just me. Im not vain anymore. Since nothing else worked, I had to resort to daily steriods..talk about losing hair!!! plus that and a fat face and all the other lovely side effects from the steriods. I guess its up to you and your doctor. Cant win!