I’d be keen to hear from anyone who has had issues with hair loss on Leflunomide (Arava). As in, did stopping the Leflunomide stop the hair loss? Did your hair return to it’s original thickness after stopping the Leflunomide? And, how long did it take for your hair to stop dropping/recover after stopping the Leflunomide?
I did notice a little thinning of hair on Mtx, but it was minor so I wasn’t at all concerned (and luckily I had plenty of hair to start with, so no one would have really noticed that I’d dropped approx 1/4 of it Then we added Leflunomide into the mix, at 10mg daily I didn’t notice significant increase in hair loss, but ramp the dose up to 20mg daily and suddenly the increase in hair loss became very noticeable… after about 4 months of the 20mg dose I had lost what must be nearly 3/4 of what I originally started out with. My rheumy suggested dropping dose back to 10mg for a month and see if it makes any difference… I’m not so sure whether the loss has reduced from the reduced meds or just because there is less of it to lose now
Now, if the Leflunomide seemed to be helping I wouldn’t be at all concerned if I went completely bald (there are some pretty cool hats/scarves etc out there ) however, I really don’t think the Leflunomide has done diddly squat for anything, so losing the hair is definitely disappointing.
@ndrabick… You might be interested in following this thread, it was reading your welcome from @Eisi_BFintern that prompted me to post on this topic … with a bit of luck we might get some answers here that might help your daughter too
I’ve heard of this happening, I believe it is a recognised side effect. And if the Leflunomide isn’t helping then the best thing, presumably, would be to stop it.
I realise things may not be this simple, so much depends on treatment protocols in NZ. Am I right in thinking that progressing to biologics can be tricky?
You need your hair! All women need their flipping hair 'cos without it we get pretty damn antsy. (You may recall I started going bald at one point, it was a horrible experience so I greatly sympathise). And you need to see improvement in the PsA even more … What does your rheumy say about next steps if Mtx & Lef don’t cut the mustard?
Hi @Sybil Thank you for your response, most appreciated!! As I understand it is quite a common side effect of Leflunomide (about 17%, I read somewhere)… I think stopping it would probably be the most likely option, especially as I cannot say I found ANY improvement from it (although perhaps it has helped to keep the PsA from getting worse, that we’ll never really know for sure lol).
There are some pretty heavy protocols to get through first before you can be offered a biologic here in NZ… 3 months of Mtx, plus Leflunomide (or Sulfasalazine), plus prednisone (for 3 months too) unless you have very high inflammatory markers (which I don’t)… I’ve now done over 3 months on Mtx 20mg weekly along with Leflunomide 20mg daily and still little response… I did ask about prednisone being added to the mix but was told to wait and see… have to say I’m darned fed up with the gap… maybe it will take actual erosions showing up on xray before the next step… I have no idea… appt. with rheumy 20th July might prove interesting… I have mentioned that I’d like a look at Enbrel, but keep getting the brush off so have no idea where to from here… I really probably shouldn’t moan so much as I do know I’m in nowhere near as a bad a state as a lot of the folk on here, and nor do I wish to get that way!!!
As for the hair loss… I’d have to say I’m not one to worry about appearances… but I have noticed the cold more this winter, all that long (below my waist), thick hair made for good insulation
I think your hair loss posts might have been before I joined the forum… did your hair return to normal? If so, how long did it take to get there? Just curious as to what might be realistic expectations lol
Hi Janson! Not sure you are aware that Arava/Leflunomide stays in the system for up to 2 years. My daughter stopped the Arava 6 weeks ago but the hair loss has continued and increased. She has lost close to half. She is 17 and a senior, so her hair is important to her. MTX was a disaster and a half! Arava was only 10 mg daily. No one can give us an answer on how long hair loss will continue. Rheum. wrote script for meds, Cholestyramine, to remove it from her body. Can not say this process looks fun either. You take it for 11 days ( will try when she gets back from her school trip). She is also taking Biotin, up to 10,000 mcg daily. Also Rogaine. Growing your hair back takes a lot of time (former cancer patient, so I know first hand). The doc said sometimes Arava damages the hair follicle also. Next step after getting it out of the body will be a biologic. We have 2 to choose from approved for under 18. She is very sensitive to meds (discovered that during her hip surgery last summer) and will usually get stomach issues, rash, headaches, constipation on most meds. So probably will not start biologic till mid August.
Hi there @ndrabick, thanks for popping in here Yes I understand that Arava takes a couple of years to clear from your system… I am hoping your daughters hair improves quickly for her, you are right, at 17 your hair is very important… for me, at 57, not so much
I thought if I put a post up on here, specifically for the Arava hair loss issues we might get to hear some others experiences with it, hopefully some positive ones, that might help to give your daughter some hope of a quick recovery for her hair at least (if not for the rest of her body)… there is enough to deal with at 17 without adding this sort of crap into the mix… I really do feel for her!!!
All the best for with the Cholestyramine treatment!! Hopefully she will get through that easily!! Even more best wishes for starting a biologic… I do hope she has great success with the very first one, it can happen!! I too have sensitivities to a lot of meds so I understand the concerns there.
You don’t moan at all. Wanting to start a biologic is entirely reasonable for most of us. They’re an available treatment that has been shown to slow progression and they often turn lives around.
My hair loss was weird, I guess it often is. Completely bald & shiny patches as if the follicles had just plain given up. It was a different scenario in that it seemed to be due to stopping Mtx. But regardless, once I re-started the drug, the hair re-sprouted and there was no stopping it. I’d imagine that if your hair has always been thick then it will be so again. I suspect that gradual thinning for whatever reason is perhaps a little less likely to repair itself.
My bald rheumy took the hair loss much more seriously than me, or at least he didn’t take any notice of my ‘oh it’s not so bad really’ noises. By contrast, a glamorous dermatologist with tons of hair was more dismissive. So really I think it’s best to decide on a position & stick to it. You may be a toughie but hair loss is psychologically challenging for women and most medics will acknowledge that.
And of course you can’t keep on the trad DMARDs forever if they’re not helping. That’s another battle cry I’d recommend.
That’s pants for you @janson. Really it is. Is the protocol 3 months of each drug seperately or even if together it’s 3 months for each drug. Why would any protocol ask for steroids for 3 whole months too? That’s scary. I was initially asked to Leflunomide but baulked and just kept side stepping it. As you know the sulfasalazine did help me significantly. Sad it didn’t last longer too. And mxt just hates me. But here we only need to fail two DMARDS, not three.
As for hair loss (I lost quite a bit of hair years ago when following a very low calorie diet) biotin worked along with various shampoos of the regaine variety. It took quite sometime to get it back, but I did.
I know my rheumy is reluctant to start a biologic, due to increased risk of infection etc… but will definitely be asking about it again, and asking where too from here lol I think if I had high inflammatory markers and/or bony erosions there would be a greater chance of getting a biologic.
And yes, having read some of the amazing improvements biologics have made for some folks I’d be really keen to give them a try
My hair loss is diffuse and yes there is some regrowth (little whispy bits lol) already… interesting that your loss was initiated by stopping the Mtx and re-starting it fixed the issue.
I’m sure the Mtx has made a little difference to the fatigue and my hands don’t seem to have nearly as many problems as before starting Mtx, but really that’s all I can say is any better despite the time on Mtx and Tilcotil… ankles, feet, knees, hips, shoulders, elbows and spine don’t seem to have benefited from any of the meds so far. But yes, definitely time to start bringing out the battle cries I think lol It will depend how “on to it” I am at the next appt. I guess… sometimes I can be surprisingly on to it, sometimes not at all
Hi there @Poo_therapy from what I understand I think protocol requires a three month trial of each of 2 DMARDS (sulfasalazine is not an option for me so that left Mtx and Leflunomide (I’m not sure if that is concurrent or not, but have been on both together since December) and I think the prednisone needs to be concurrent with DMARDS (as the prednisone mucks with ESR and CRP test results, if on it you don’t need to have high ESR or CRP results)… It’s a pretty mucky system we work in here I think.
It seems the hair loss was my only noteable side effect from the Leflunomide, so I was grateful for that… I wouldn’t expect the long hair to suddenly appear again, it took quite a few years to let it grow that long in the first place lol but it would be nice to think it might come back again eventually
At this stage I won’t bother with trying to treat the hair loss… hopefully nature will do it’s thing
Quick Update: So, I saw my rheumy today, we are stopping the Leflunomide and give Plaquenil a try… my hair loss is still diffuse and now I have lots of short “fluffy” bits where regrowth seems to have started already… am hoping this is a good sign that will mean I end up with a full head of hair again sooner rather than later
My hair loss is really diffuse (or at least as far as I know ), so no bald patches to speak of, although I do think my part is definitely wider than it used to be (almost a racing stripe ) :… now I have this “halo” look of wafty, fluffy short bits… and yup… it looks like a possibility my next (natural) hair style will resemble a very “blonde” affro
Thanks for the good luck wishes with the plaquenil, it’d be really nice if it does some good, but to be honest I’m starting to get a little jaded on the wishful thinking front and another 3 months or so of taking something ineffective is not a happy prospect just now… Still anything is worth a try
I have been on biologics, etc for close to 40 years years and never suffered hair loss until I started on Orencia. When diagnosed I was put on gold injections, then Enbrel, Humaria, and then to infusions of Remicade. That was working for 8 years until I developed SLE (Secondary Lupus) was taken off Remicade and placed on Oriencia. I had a total of 6 months of Oriencia, with two extra infusions in the beginning. I noticed my hair at the scalp was really thinning and even after a haircut 6 weeks prior, most of my hair looks like it has not grown at all. I mentioned all this to the Rhematologist and the fact the psoriasis has not improved, but was actually worse for over a years time, we stopped the Oriencia. I started on Simponi 2 weeks ago with MTX injections as well. Have had only one so far. I could sort of deal with most everything this disease has had to offer, but loosing my hair?..I draw the line. Plus still suffering the lupus after one year after being off Remicade. My Dr was in hopes it would just fade away. No such luck. I know every biologic has a side effect of hair loss and everyone is different, so it is just the luck of the draw.
Then we added Leflunomide into the mix, at 10mg daily I didn’t notice significant increase in hair loss, but ramp the dose up to 20mg daily and suddenly the increase in hair loss became very noticeable… after about 4 months of the 20mg dose I had lost what must be nearly 3/4 of what I originally started out with. My rheumy suggested dropping dose back to 10mg for a month and see if it makes any difference… I’m not so sure whether the loss has reduced from the reduced meds or just because there is less of it to lose now 
) however, I really don’t think the Leflunomide has done diddly squat for anything, so losing the hair is definitely disappointing.
) :… now I have this “halo” look of wafty, fluffy short bits… and yup… it looks like a possibility my next (natural) hair style will resemble a very “blonde” affro