Has anyone experienced hair recovery on a lower dose ... - NRAS

NRAS

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Has anyone experienced hair recovery on a lower dose of Mehotrexate?

FatJoints
FatJoints

Hi all, hope this message finds you well. I've been on Methotrexate for a year and happy to say my symptoms are manageable. It's just the hair thinning hair which is infuruating (and a dry mouth, eugh). Anyhoo, I gather there's a generally accepted order they try the different drugs, without much scope for skipping and going straight to biologics (I appreciate it depends on individual circumstances). I showed my rheumatologist my hair loss and they're trying me on progressively lower methotrexate doses, before I go onto try other drugs. I'm down to 10mg after being on 15mg and 12.5mg. I'm a bit concerned by Christmas my forehead will be halfway up my scalp (which is admittedly a small price for knees that can bend). I'm not sure whether my hair will recover, so much as the loss will decelerate. Anyone experienced this? Anyone noticed hair recovery whilst still on Methotrexate? Thank you 😘. xxx

22 Replies
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Hidden
Hidden

Hi my hair has started to thicken again but I think that’s because my intake of folic acid was increased. My hair isn’t as thick as before medication It’s also grown back curly.

FatJoints
FatJoints in reply to Hidden

Hi Jenny, thanks that's encouraging - at least it's showing some signs of recovery. They increased my folic acid too but it doesn't seem to be making a significant improvement. It's tricky for me to gauge because obviously hair growth isn't overly rapid lol. x

rosie1928
rosie1928 in reply to FatJoints

I forgot to mention that i started using hair mousse to control those flyaways bits of hair and it does have the effect of giving the hair more body.

Yes I have, In fact it's grown back curly, in fact so much so I don't style it any more which I'm sure has helped with little loss going up to 20mg. I didn't have handfuls come out even when I first started it but enough for my hairdresser to notice & cut it shorter & into a different style.

I have recently read of iodine & selenium or selenium & zinc helping though I've not tried either as my hair has stopped thinning/breaking for the mo. I think it might be worth a try if it happens again & it's ok'd by my Rheumy.

I do hope it doesn't get so bad you have to resort to a wig, you never know it may just stop now you re in a lower dose & if not then at least your Rheumy is aware. Just a thought though, leflunomide can also have this effect as can some biologics sorry to say. Hopefully though it won't come to that & it'll ease off especially as you seem to be otherwise doing well on MTX.

Hiya nomoreheels, that's good to know thanks :) It's at the point I'm just getting away with it, but any more and I'll have fairly big gaps at the sides and front. Root touch-up spray is great so I can take the edge off some of my scalp showing when the light hits it lol. No, definitely not coming out in clumps but it's more a gradual thing. This arthritis experience has taught me that the Body has amazing ways of recovering and adapting to medication etc so this gives me comfort that it might grow back. Wigs might be kinda fun... My hairdresser's been trying to persuade me about alternative hairstyles. Thanks! x

Well let's hope that's it & starts growing back. To say it's supposed to happen to only a few percent of people on MTX we do see a lot of similar posts, but then here is where you look for experiences in the hope you're not alone, most are looking for help. I forgot to say that the disease itself can also affect your hair but if it's only been since a little after starting MTX then that's less likely in your case. You sound as if you might have a good time with wigs, wacky colours maybe? Or, maybe it's time to visit your hairdresser, see if she can style it so it's not as obvious to you, until you have regrowth? Mine did a good job.

Hiya, that is a really good point about the disease vs the meds and absolutely its good to hear other experiences. My hair did get a bit thinner at the sides for no apparent reason about 10 years ago i.e. Before I knew I was auto-immune. It's been on my mind but there's a definite change since taking the medication and I've never had hair breakage before. Most folk seem to have experienced recovery so that's a comfort. Failing that, I reckon purple wig to start... x

I've been on MTX for just over 18 months and my hair did fall out quite a lot in the early days. It does seem to have recovered a lot although the texture has changed. It was always fine but had loads of it so when it thinned I got it cut shorter for a while. Well worth another discussion with your rheumy team, perhaps? Wishing you well

J

FatJoints
FatJoints in reply to Gnarli

Hiya Gnarli, thats great to hear it recovered. It's interesting people comment on the change of texture growing back. It gives me a lot of reassurance too. I might just have to give it time. My hairdresser's on my case to take the opportunity for a wee change lol! x

I have had hair loss since starting MTX but it seems to be slowing down now and i am trying to grow my hair into into a bob. Have been on MTX for about 9 years. Mine didnt come out in clumps but slowly. I put it down to ageing as well..... I noticed a big improvement when I was taking fish oil as well.

FatJoints
FatJoints in reply to rosie1928

Hi Rosie, same here - gradual cascade. Hope the MTX has your symptoms under control 👍🏻 It seems to be working well for me, apart from the Barnet. x

rosie1928
rosie1928 in reply to FatJoints

Yes the MTX is the best med i have been on. Thanks and all the best

From experience Rosie rather than a bob (which I had when I first started MTX & had hair thinning) a skilfully cut layered style works better when hair is thinning. I'm going to back a while (when I first starting MTX 9 years ago) & admit I was a little hesitant when my hairdresser suggested it but it seems to work, it gives body to the hair rather a one length hair cut which drags the hair down, if that makes sense? More recently I was trying to grow mine as I'd decided I wanted to try for a bob again & was amazed when my hairdresser showed me how much it had grown (when my curls caused by MTX were combed down). She recommended layering it again but keeping as much length as the style would take & she was right, I have lots of bounce with just letting it air dry. I understand you're saying yours is slowing down so may be not a relevant for you but might be a consideration if it helps anyone else at all.

My rheum upped my folic acid to 5 mg daily. Cut the hair loss dramatically.

FatJoints
FatJoints in reply to CarolyneJA

Hi Carolyne, that's great it made a good difference. I didn't quite realise how much my hair was affected till it was getting quite obvious so I didn't up my folic intake untill after about 8 months on MTX. Hope things are good with you 🙂 x

CarolyneJA
CarolyneJA in reply to FatJoints

Yes, keeping my hair. :-)

Hi I've been on Methotrexate for about 5 years now and I'm happy to say my hair is as thick as it ever was. I've lost hair on other parts of my body but not my head.

I really hope yours comes back to normal soon x

FatJoints
FatJoints in reply to dozzer15

Thank you 😁 x

I am experiencing hair loss and hate the thinning. From what I’ve read folic acid is necessary to help not only the hair loss but the sores you can get in your mouth. I’m curious if anyone has tried a product like Rogaine to help encourage regrowth.

CarolyneJA
CarolyneJA in reply to BonnieT

I was going to - but then my rheum upped my folic acid dose to 5mg daily - hair is great now.

Yeah, I was wondering about that aswell - I see adverts for those shampoos etc. I've been taking my folic acid as prescribed so hopefully my hair will recover OK. I've been fortunate not to get many other side effects. Hope things are good with you 🙂 x

I’ve discovered turmeric helps as per someone else’s post last week. A big thank you to whoever wrote that post. Taking as a capsule not as a spice.

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