Abatacept and hair loss

[Heathertuk]

Hi

Anyone have any info on Abatacept and hair loss, well hair thinning? I’ve been on Abatacept for 2 years and it works well but I’ve lost approximately 50% of my hair.

[JenniferW]

Hi Heather

Hair thinning can be caused by quite a few things. Do you have any other newish symptoms?

I also have an underactive thyroid and that causes thinning hair, as does low iron levels. Have you been tested for these recently? Both are more common among people who have other auto-immune conditions.

The menopause can also cause problems with thinning hair, if you happen to be around that age, i.e. 40+, which some people take biotin, a B vitamin.

I see you are taking methotrexate, how often do you take folic acid? Maybe a chat with a GP about vitamin supplements might be helpful.

I take abatacept, but the hair thinning doesn't seem to be related to that in my case, adjustments to my thyroid pills and iron supplements helped me.

Best Wishes

Jennifer

[Heathertuk in reply to JenniferW]

Thank you Jennifer, I’m going to make an appointment with my GP. I’m over forty and know that hair thinning happens as we get older but this seems more than just the ageing process.

[medway-lady]

No but MTX did this to me a good few years ago and it was stopped my hair grew back but not pleasant. I'd urge you to talk to your RA team as this can be a distressing experience. The RA meds are such a lottery and Etanercept gave me so many UTI's but Abatercept seems to be ok although it doesn't work as well. I have an appointment later this month and will talk about it to the consultant, it seems not as effective as Etanercept and only reduces the swelling in my hand for a couple of days.

[Neonkittie17]

I’ve recently started it but nothing I have seen or heard has said about the hair. Sorry to hear that. Are you on other meds too?

[Heathertuk in reply to Neonkittie17]

No other meds just Abatacept.

[Feank]

I think it could be down to the methotrexate. Maybe. I suffered with thinning of my hair whilst on this and after 3 years I asked to come off it as I was struggling with losing my hair! Speak to your consultant as others have said. These are powerful drugs we take and some of the side effects can be upsetting. My hair has now returned to almost as it was...it has taken 2 years though.

[Heathertuk in reply to Feank]

I’m not on Methotrexate, I stopped that back in 2018, I’m only on Abatacept now. I just wandered it this could be the cause.

[CagneysMum]

Hi.

I began to lose hair (lots!) about 2-3 months after starting methotrexate, despite also taking folic acid. My hair line started to recede quite quickly.

My rheumatologist suggested I give a supplement a try called Biotin which I purchased through Amazon. After 3 months my hair loss had slowed down a lot and by 5-6 months was growing back. Biotin had done its job after 12 - 18 months so I stopped taking it. My hair loss had gone back to normal and my hair volume had completely recovered. It may be worth discussing this with your consultant to see if it might work for you.

I now also take a daily marine collagen supplement which helps maintain the condition of my hair …also helps bones. Don’t do anything without checking first though, we are all different. Good luck. 👍

[Heathertuk in reply to CagneysMum]

I’m not on methotrexate anymore, not since 2018. I’ve made an appointment with my GP to see what see suggests and which vitamins I could try. Thank you.

[Emye343 in reply to CagneysMum]

hi CagneysMum

Can I ask what marine collagen supplement you take please? My hair is falling out with a combination of leflunomide and infliximab infusions. I’m already taking folic acid and biotin but it hasn’t made a difference, yet anyway. Very depressing…

[CagneysMum in reply to Emye343]

This is the one I still use (from Amazon) to improve the condition of my hair, skin, nails but it was the biotin that actually helped to stop my hair loss. Hope you can find something to work for you, I know how distressing it is to start losing your hair on top of everything else ❤️

Marine collagen powder

[Emye343 in reply to CagneysMum]

thank you! Can I ask how much biotin you took?

[Nuttyshirlz]

hi I also suffered with hair loss few years ago and it’s quite scary when it happens I’m on mtx to name a few and I’m still on it and my hair as settle now. I actually did a post on it myself and I started to use Philip Kingsley elasticity and it’s made a big difference to my hair. But if you go on google you will read all meds for arthritis have hair loss as a side effect but my dr also said it couldn’t being my age too. Or stress. My nurse also up my folic acid too at same time. Speak to your team if you can mines in hiding lol

[Heathertuk in reply to Nuttyshirlz]

Mines in hiding too😂 I’ll give Philip Kingsley a try. Thank you.

[Deeb1764]

if you type in hair loss in the search bar you will see other posts re this. I has fit with MTX but my niece a hairdresser said use biotin or sea kelp but I also started taking marine collagen capsules. My hair went from super thin back to thick within 3 months. My scalp improvement was huge too

[Heathertuk in reply to Deeb1764]

Thank you, I give them a go.

[Angjoplin]

I'm not currently on abatacept but various drugs have destroyed my hair and I understand how upsetting it is.I swear by salt spray which adds body and texture to thin hair. V05 texturising salt spray I've found to be the best. Hopefully you find the course but in the mean time this might help a little.

[Neonkittie17]

Really sorry to hear that. Could you ask your rheumy to refer you to a trichologist? Fifty per cent is a lot to lose. RA uncontrolled can do all sorts to our skin and hair but after a couple of years on Abatacept I hope it’s calmed down the RA for you. I hope you can get some help.

[Heathertuk in reply to Neonkittie17]

Yes it’s definitely helping. It’s probably the best bio I’ve been on. Saw my GP today, I’m getting bloods taken just in case it’s something else, underlying.

[Durrell]

Hi, yes I also had the same experience on Abatacept, my Rheumy upped my folic acid to daily rather than weekly it did settle & resumed folic once weekly after a few months..

[Heathertuk in reply to Durrell]

Thanks, My GP has taken bloods so I’ll see what comes back from that.