Side Effects of lefludomide

[Maggie_May]

Hi All,

Hi all, hope you are all having a nice Easter, just wondered if anyone has suffered hair loss with lefludomide ? 

[medway-lady]

No MTX did mine and it was horrendous, LEF is great for me, so much energy and the pain is gone. No swelling and so do you think it could be something else?

Everyone is affected differently so you should save the hair and show the RA team. I did that as I lost handfull, not a few strands on the MTX and was told unusual to be so sensitive to it but lets chuck it away right now.

I hope you have a sympathetic team and it gets sorted out.

I should add the side effects of severe tendon pain lasted for about 3 weeks with the LEF when I first took it but I'm so glad I stuck with it.

[Maggie_May in reply to medway-lady]

Hi Medway- Lady, 

I was on MTX first and started to loose hair and felt really rough all the time, though not in so much pain. I came off it and and only took Sulpha for a few months then went on to lef it isn't really helping much with the pain as I am only on 10mg. My RA Doctor wants to get me up to 20mg a day but is concerned as I have a very bad tummy plus other things. I have started to loose a lot of hair again  I have also been diagnosed with AS now. Hair loss is depressing isn't it, and with the lows of RA it is hard to keep smiling some days.

[medway-lady in reply to Maggie_May]

Hi Maggie May

Yes hair loss is awful but the LEF has not affected me at all, and to be honest I feel great learning to foxtrot !!

[brit2013]

Hi yes I suffered hair loss after taking leflunomide for 6weeks, still loosing hair but I'm told it can take upto 2years to clear from your system. 

[Hidden]

Hi, all of these different drugs become a blur in the end! I've just had a quick look back over my old posts and I lost a lot of hair too on 20mg leflunomide. The loss decreased when I went back down to 15mg but unfortunately the dose was not sufficient to control the disease. In my case the hairloss stopped pretty quickly once off the drug. I also suffered hairloss on mtx tablets but find I can tolerate injectable mtx up to 15mg. Have you asked to try that? x

[Maggie_May in reply to Hidden]

Thank you for replying, 

My Rheumy has said I could try mtx injections but we are both reluctant as I had so many side effects on mtx . My body just doesn't seem to tolerate these drugs. At the moment I am still only taking 10mg of lefludomide which is not enough to stop flare ups and I am in a lot of pain. It is depressing  looking at my hair now as I have hardly any  My hairdresser only charges me half  when I go for highlights and doesn't charge me for a cut anymore, though at the moment this doesn't seem like  a benefit !

I constantly tell myself that compared to what is going on around the world I really should be grateful that I only have RA/AS and hair loss to worry about, but some days I just can't do it. 

[Hidden in reply to Maggie_May]

I know exactly how you feel as I found the hairloss soul destroying. I ended up too scared to even comb mine in the end as it just came away so easily. I know we're all different but I tolerated metoject much better than tablets. In the end I also had Humira added in and the difference has been amazing. Has your rheumatologist mentioned biologics yet?

[Chalmers]

I have recently come off leflunomide as I suffered weight loss and hair loss.  This wasn't just the shedding of a few hairs, it was serious stuff.  At first my friends would say "no your hair looks fine but in the end when they started to say they could see I knew it was looking bad.  There was hair everywhere, the worst was when I washed it and so much would come out that  it would block the plug hole.  I eventually collected a weeks hair loss, put it in a plastic bag and showed it to my nurse, who could see how serious it was.  Glad to say that as soon as I came off it it has started to grow back, still not as thick as it used to be, but much better.  I  was on MTX before the leflunomide and I also suffered hair loss with that as one of the side effects.  I have always had a decent amount of hair and it really did make me sad to see it changing to this wispy thin mess, I also felt like my hair started to recede, thankfully the fringe was the first place that I could see it regrowing. 

[Maggie_May in reply to Chalmers]

Hi Chalmers,

That is exactly what is happening, I have a black marble fireplace and it is full of my hair every day. I dread washing it, and my hairdresser has said my hair line is receding at the kneck line. I am wondering if I should come off lef now but I don't want to go back on mtx. It seems we are in a catch 22 with this desease.

[Chalmers in reply to Maggie_May]

I totally agree with you, difficult to know what to do next.  I am on yet another tablet called hydroxychloroquine which is doing nothing for me.  The only thing that seems to help me is steroids, which they do not like to prescribe for any length of time.  Incidentally my hair now has more of a wave in it than before, it was dead straight.  I dreaded washing mine, in fact I left it much longer than normal to do it, strands would come away as I washed it.  Good luck Maggie May.

[Maggie_May]

Thank you Chalmers, I hope you have a good day.

[chrissie53]

I to am on Leflumonide,, luckily only slight hair loss, but the weigh loss has been very dramatic,, have lost over 3 stone,, nobody took me seriously until last visit to rhumy,, had cet scans colonoscopy, but nothing showing,, I,m lucky I don,t  get the swellings with the RA, just the severe pain, had the lef reduced to 10  mg now,,trouble is like a lot of people my body hates strong drugs,, have bloods done every 8 weeks, next app in June at Poole, so will see what they say,,

[Maggie_May]

Hi Chrissy,

I have also lost over a stone, didn't realise it could be from taking lef . I have just had a blood test for coeliacs but I doubt I have that as don't have all the symptons. The Rhuemy wants to rule that out so they know if the lef is upsetting my stomach too. There is so long between appts, I saw her in Feb and next appt is June ! I don't get swellings either but have a lot of pain which keeps me awake most of the night.

[medway-lady in reply to Maggie_May]

This happened to me and the real shock was the RA consultant was right! so gluten free now and feeling great. Theres no medication for Celiac just abstaining but its not hard although I'd fight someone who took my chocolate away. LOL

[Maggie_May]

Hi All, thank you so much for all the replies which have really helped. It spurred me on to take action so I rang my RA doctor and spoke to his secretary last week. He rang me yesterday and said to ween myself off Lefludomide. He is bringing my appt forward from June so we can find another drug. He also said to go to my doctor for a urine test as I could have an infection. I thought it was the Sulfasalazine that was making me go to the loo 3/4 times during the night. Maybe once that is sorted out I might get more sleep which I am sure will make me feel a lot better. I am still working and getting up at 6-30am for a long day childminding and it is getting harder and harder. Maybe, just maybe, after many years of struggle I might get sorted out. Hope you all have a good day.