Hair loss on Hydroxychloroquine?

[Nikky101]

Hi all

I would be really grateful for some thoughts from this group on hair loss when on HCQL. After diagnosis of séronégative inflammatory arthritis in March this year I was put on MTX which I didn’t tolerate at all (zero energy, brain fog, nausea) so moved to 400 mg HCLQ (and some steroid shots) in July. It seemed to helping a bit although it’s hard to tell because life was frankly so unlivable on MTX I was starting from a low baseline but I did start experiencing hair loss after the switch which bothers me of course. I thought at first it was a hangover from MTX but it has continued. About a month ago I contacted my rheumatoid nurse who said my consultant said to halve my dose. I have done that but I still have significant hair loss. Has anyone else

Has anyone else Experienced this with Hydroxychloroquine? I know it’s a known side effect of MTX but my GP and chemist didn’t know about it being a side effect of HCQL (they looked it up and checked). Would any supplement help?

[Hidden]

Eat a well balanced colourful diet. Also ask your GP to check your vitamin D, iron, Zinc and folic acid levels. Sometimes a deficiency in any of these can cause a hair loss problem. It is best to have levels checked before taking supplements. Good luck.

[Nikky101 in reply to Hidden]

Thank you very much. Happily all my levels were normal- I had my tests done on Friday. I saw my consultant today and she has offered me the choice to try to go without meds altogether or to move on to biologics.

[CagneysMum]

This was an issue for me on MTX not Hydroxychloroquin… but I found a supplement called Biotin really helped. It was suggested by my RA nurse. Took a couple of months to start working but it slowed down and then stopped my hair loss and it’s now all grown back. I no longer take biotin but do take a marine collagen powder supplement to help with the condition of my hair.

[Nikky101 in reply to CagneysMum]

Thanks so much. My hairdresser recommended biotin and have been taking it for a month with no effect so far but I will persist. The marine collagen powder sounds interesting - could I ask what that is please?

[CagneysMum in reply to Nikky101]

A collagen supplement to help bones, hair, nails, skin … not sure if any of it really works but I feel better for trying and my hair has definitely improved. It’s in powder form (no taste or smell) so I stir 1 heaped teaspoon full into a cup of coffee once a day. I buy off Amazon, just search for Marine Collagen Powder. Do check with your GP or RA team to make sure it’s ok for you to take.

This is the one I use.

Marine Collagen Peptides (400g) | Hydrolysed from Wild Caught North SEA Cod | 1.5X Better Absorbed Protein Powder | Amino Acids for Bone, Joint, Gut, Hair and Youthful Skin | Halal, Kosher, Keto amzn.eu/d/b882r9n

[Nikky101 in reply to CagneysMum]

Thank you so much. I will give it a try.

[CagneysMum in reply to Nikky101]

Good luck, I know how upsetting it is to start losing your hair on top of all the other gifts that RA gives. A tub costs about £28 and lasts me at least 3 months. You could always ask Father Christmas to bring you a silk pillow case for Christmas too as it’s much kinder to your hair than cotton, especially if you’re a restless sleeper. Silk causes less friction so less breakage/fall out. I knew none of this info before RA 😆😆

[Nikky101 in reply to CagneysMum]

Another helpful tip thank you. I rarely wash to brush my hair, have cut it short so my hair always looks like I have been out in a storm so I’m just about managing to disguise it but it is coming out in clumps and looks fragile. Do I need to stop dying my hair? I think underneath my dye I’m very grey/white and I’m not really ready to take that step yet but…

[CagneysMum in reply to Nikky101]

Adding colour shouldn’t weaken your hair but using peroxide or chemicals to lighten your hair (remove colour) can weaken the structure. I’m no hairdresser but that’s what I’ve always believed. 🤷‍♀️

[welsh12 in reply to Nikky101]

Bless have had this issue but unrelated to meds its distressing

[DoricQuine55 in reply to CagneysMum]

I have just sent for this, thanks for the link. My hair seems to be getting very thin lately but could just be old age! 😂

[KittyJ in reply to DoricQuine55]

Please check with your doctors before taking supplements in case they interact with meds you are on.

[Moonjean]

Sorry to hear of your hair loss problem. I was on MTX for two years but came off it for the same reasons as yourself. I chose to go on Hydroxychloroquine and although it took weeks & weeks to kick in it is now keeping me pain free. I did lose some hair when on MTX but have not experienced any while on Hydroxychloroquine. Perhaps a word with you Rheumy Nurse would help. Good Luck.

[Nikky101 in reply to Moonjean]

Thank you. It seems it’s very rare on Hydroxychloroquine- even my Rheumy had to look it up. I was prepared for it with MTX but it never happened - I just seemed to get all the other side effects with that one. It’s not an easy ride this condition, is it? But it does remind me to be grateful for the days of good health and when I get my hair back it will be celebration central

[Kgj2112]

I have AS and am on 200 mg of hydrox with no side affects, that mtx had

[Retirednhs]

Hi NickyI have been on methotrexate for about 15 yrs and of course it suits me and l also have Rituximab infusions x2 every 6 months and also prednisalone 2.5mgm maintenance ance dose daily. I found it difficult at first with methotrexate which at first was tablet form about 20 yrs ago and it took me a while to get the benefits but since l have the injections l am fine . Sadly .most of the drug treatments for RA have side effects one of which is thinning hair l have a short haircut now which helps with it looking thicker and friends recommend caffeine shampoo which helps . Sometimes perse erence with a drug does work it did for me l was on another drug which h made me very ill and was changed to methotrexate l was not happy at first but happy l persevered . Hope this helps good luck on your journey for control of your drugs and that you soon improve

[Nikky101 in reply to Retirednhs]

Thank you so much it’s helpful to know that hair loss/thinning is a known side effect of most drug treatments. I’m relatively pain free and mobile atm so am thankful - I know it could be so much worse

[barbieg]

I’m not sure if you know but what is happening to your hair now is a result of things (stress, medication etc) from months prior. I lost a lot of hair when I was taking Methotrexate alongside stomach/digestive problems and eventually came off it. It took months for my hair to recover. When you wash your hair don’t rub it roughly with a towel to towel dry,it. Pat it gently. Use a large tooth comb to comb through wet and dry hair too. I use conditioner on the ends and brush through with a thinning hair wet brush. I don’t use cheap shampoos either. I’m now on a Biologic and lose some hair but nothing like I did. It’s normal to lose some hair by the way as it’s dead hair on our heads 😊. Also, have you had your Thyroid checked. My son and mother both needed medication for this and hair loss was one of the first things I noticed on them, being an ex hairdresser.

[Gucita]

Hi! I took methotrexate but no luck for me with it. I will be looking into Kevzara, it is not a steroid but it may have other side effects. A friend of mine was telling me about people who have gone into being vegan and that has worked wonders for people with rheumatoid arthritis. I am diagnosed with Polymyalgia reumática but I am going to try that method for at least 15 days. Good luck to you!