hair thinning with leflunomide

[challahheadRN]

Hello all,

I have RA and am taking 40 mg amjevita biweekly and 20mg leflunomide every day with 2mg folic acid. I’ve been on leflunomide for about 3 months after stopping methotrexate due to chronic nausea. I actually think the leflunomide is working better for me than methotrexate, less hand pain and stiffness-yeah!!! However, the past month my hair has begun thinning terribly which is a known side effect of leflunomide. I did send a message to my Rheumatologist and they suggested trying over the counter hair supplements. Has anyone experienced this. Did anything help? This is my 3rd DMARD in a little over a year and since this one is working I’m hesitant to change yet again. I appreciate any advice anyone has to offer. Take care!

[AgedCrone]

Most DMards have side effects for somebody…why not try asking your rheumy if you could maybe increase the folic acid?

As you say changing a Dmard that seems to suit you isn’t something you want to do too soon - without getting advice.

But on the other hand, loss often settles down after a few months….I hope that is the case for you.

[challahheadRN in reply to AgedCrone]

Hello AgedCrone, yes, I was thinking about asking my rheumy if I could go up on the folic acid. I have an appointment in a few weeks so I think I’ll get some answers. I really hope the loss settles down, I can accept hair thinning (to an extent😉) if the medication is working well. I appreciate your reply and words of support!

[MistyDay]

It might be worth asking to have your vitamin d levels checked . Sometimes low vitamin d could also be the problem. I find my hair is thicker when taking vitamin d but do have levels checked before taking them.

[Doodlereggie in reply to MistyDay]

Your reply is very interesting,as I seem to be shedding a lot more hair than usual and can see pink patches when hair is wet.I thought it might be JAK meds or have hyperparathyroidism recently diagnosed.However my vitamin d levels are very low from tests last week 44 instead of normal range of 51-250,I understand.Been put on 1000iu a day since last week.Could it be low vitamin D ,comments would be very welcome.thankyou xx

[MistyDay in reply to Doodlereggie]

I went to a new hairdresser and she commented on my hair thinning a few years ago , and suggested I saw my GP. I too have RA and I was on sulphazalasine at the time. Mx and Lf gave me nausea and bowel cramps.My GP thought I might be deficient in vitamin d. She tested the levels and I was. My hairdresser now comments on how good my hair is now, compared when I first visited her. I still take it. My GP said to take it for 3 months then have a break of about 6 weeks , as too much can cause liver damage, then go back to it. This is why I take D3 and K2.2000iu. If I feel more tired for a couple of weeks , I eat iron rich foods for a bit , and that too seems to do the trick. Our general health is affected by our diet and I include loads, and a variety of fruit and vedge. Fortunately I love them and tolerate them well. It is easy to blame a medication for a side effect, which I accept can be the case. However, sometimes it is caused by something else. I am a firm believer in being tested for things first, if possible, rather than try this and see if it helps .

[MistyDay in reply to MistyDay]

Now take D3, 1000 iu and K2 since vitamin d levels improved.

[challahheadRN in reply to MistyDay]

Very interesting about the vitamin D, I will ask for a Vit D lab when I go in. I am in Washington state, which is a notorious area for Vit D deficiency. I think it was well said that sometimes we blame the med when other things could be the causative factor of our symptoms.

[Runrig01]

I’m not on Leflunomide, but experienced hair thinning on MTX. In my case, I have so much hair that it’s not noticeable. It also settled down after about 3 month. I personally don’t use any supplements, but I’ve heard many say biotin is good.

I did start collagen supplements recently, which they say helps hair thinning. It wasn’t for this reason I started them, but for the tissue paper skin, I have, caused by steroids. It’s early days but does seem to be making a difference to my skin Haven’t notice change in hair texture yet though.

I would contact the team and see if increasing folic acid to 5mg 6 days a week helps.

[MJSlide1958 in reply to Runrig01]

Hi, I too need to take a collagen! Please may I ask what brand and daily dose do you take?

[Runrig01 in reply to MJSlide1958]

I take “weightworld 100% pure marine collagen” the dose is 1170mg daily. As I mentioned I’m using it for skin, as some studies show it helps steroid patients with tissue paper skin. I’m definitely seeing some improvement. My skin isn’t tearing so easily now. I do have bone on bone OA in both knees, so it would be good as a bonus if it helped that. The arthritis is at the femeropatellar joint, as both kneecaps are subluxed and don’t sit in their tracks, so have worn away. Fingers crossed it helps that too 🤪🤞

[MJSlide1958 in reply to Runrig01]

many thanks

[Kati66]

Hi, I changed to Leflunomide from Methotrexate due to bad side effects and the new medication seems to be helping. I have however experienced bad hair loss on Leflunomide. Its affected my confidence as my hair was the only bit of me that I liked 😔. The decision to have hair loss or RA pain and flares is a difficult one but I don’t want to end up like I was in 2022!

[challahheadRN in reply to Kati66]

I completely understand!

[smilelines]

I had some hair loss when first on leflunimide but it thickened up again.

[challahheadRN in reply to smilelines]

That is very reassuring! Glad yours thickened back up!

[medway-lady]

You don’t take folic acid with LEF normally so if I were you I’d make sure that’s right. I had hair loss with MTX but not LEF so don’t know what you can do except wait and see. If the LEF is stopped for something else like a biologic it will regrow.

[Wobblyone in reply to medway-lady]

I’m prescribed folic acid and leflunomide. Not everything is the same for everyone

[medway-lady in reply to Wobblyone]

That’s why I said check as I’m sure it’s not usual. It could be down to an interaction so better safe than sorry.

[Wobblyone in reply to medway-lady]

What’s not usual?

[medway-lady in reply to Wobblyone]

MTX depletes Folic Acid but LEF doesn’t. It might be prescribed for something else or with the LEF in USA I don’t know hence said ask your RA team . I had hair loss with MTX it was in huge handfuls and a feeling of being set on fire but with LEF no impact on hair and it worked well. But it does take time to work. So it doesn’t cause an issue to ask if there is a reason and an inter reaction. It’s not the same perhaps in USA?

[challahheadRN in reply to medway-lady]

Yes, it is not the same in the US it seems. My rheumy said stay on the folic acid with the leflunomide as it can cause hair thinning just like methotrexate. I’ve noticed quite a few differences in the USA medication protocols from what I see posted here, so interesting.

[Bethany02]

Hi worth trying rosemary oil superdrug sell it also black castor oil very good for thinning hair also helps growth