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AIBU?

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Original poster

To stop my RA treatment because of hair loss

34 replies

Emmadaily · 25/08/2024 16:06

Posting here for traffic
I have decided today to stop my treatment for RA called Leflunomode as my hair is visibly thinning
I will still have my infusions when needed
which are normally around 12 to 18 months max
My question is
Has anyone here stopped medication because of hair loss and how long before it stopped falling out and then growing back again properly
Thanks for reading .

OP posts:
Original poster
Emmadaily · 25/08/2024 17:08

beeloubee · 25/08/2024 16:57

Try and look into natural treatments

Yes that's something I will be doing

Thankyou x

OP posts:
Original poster
Emmadaily · 25/08/2024 17:06

Thank you both for replying
So fellow sufferers experienced these side effects so sympathies to you both and any other sufferers out there
I do respond ever so well to the Rituxumab but this last time after 4 months I was still suffering hence the lef being added

I'm now for the moment feeling so much better but the hair loss is really getting me down so I'm going speak Tuesday with my nurse and will go for there
Good to know your hair came back nice thanks for telling me and great to hear you got your life back xx
This post for both of you that have responded to my thread xx

OP posts:
beeloubee · 25/08/2024 16:57

Try and look into natural treatments

lotsofdogshere · 25/08/2024 16:53

It’s worth phoning your specialist nurse and asking for an alternative. I couldn’t tolerate luflonomide. I’m on biological treatments - gave me my life back. Best of luck

Twilightstarbright · 25/08/2024 16:52

I have RA. Mtx made my hair fall out horribly and it got me so down. It also didn’t control the RA well and I got a massive hangover from taking it. I’m on my second biologic and two years in my hair looks so much better.

Sympathies- it’s a shit side effect.

Original poster
Emmadaily · 25/08/2024 16:44

Hi yes that's right and I'm going have this break from the Lef to see how things go

Have no side effects with Ritixumab just a bit of extra tiredness whilst waiting for it to kick in
This drug is an add on after my last infusion to help me out but my hair as now gone visibly thinner and feel quite distressed about this
Yes it's all choices x

OP posts:
Commonsense22 · 25/08/2024 16:36

@Emmadaily the problem with RA is that treatments nearly all come with secondary effects. Patients get to "choose " whether RA or the secondary effects are worse. Unfortunately only you know whether you can better manage the pain or the hair loss. Different patients make different choices.

Original poster
Emmadaily · 25/08/2024 16:35

Toddlerteaplease · 25/08/2024 16:30

I wouldn't risk the RA flaring up again. Would you be allowed to just dip in and out?

Hi toddlerteaplease
Thanks for replying

I'm ringing my specialist Tuesday morning to explain and I will suggest this
Didn't think of this idea so thanks for this .

OP posts:
Toddlerteaplease · 25/08/2024 16:30

I wouldn't risk the RA flaring up again. Would you be allowed to just dip in and out?