Leflunomide

[chrissie53]

I have been on Leflunomide 3 months now, and am coping very well on it,, my only concern is the weight loss side effect,, gone from a size 18 to 12,, costing me a fortune in clothes and i love being slimmer,, but will it settle down eventually,,,

[Livingston]

I've been on it 5 weeks & it's making me very, very hungry. OK just now as I could do with gaining a bit, but no good in the long term. Maybe we'll meet in the middle!

[Hidden]

Have words with your RA Nurse

BOB

[Heathersmum69]

Hi, I have been on it for a week now. So far so good , except yesterday I came over all shaky and out of the blue I burst into tears.

I do hope I lose some weight, two stone would do. 😌

[sallyeb]

I found when I started lefluomide I lost weight too. I just didn't fancy food so didn't eat. Not really a good start. It soon settled down though x

[chrissie53 in reply to sallyeb]

I went of food for awhile,, i have to force myself to eat

[Ali_H]

Hi Chrissie,

That's a lot of weight in just three months so I would get my blood sugar levels checked to be sure that something else isn't going on.

All the best

Ali

[chrissie53 in reply to Ali_H]

blood is fine,, having them done every 4 wks

[Cagsie]

They reckon you should only lose 10% of your weight. I've been on it for a few years now and the weight loss settled down. ( still fat ). You weight sounds more, have a word with your Rheum nurse just to be on the safe side. Good luck x

[Katheryn13]

Woah...I'd take the weight loss. 😱 but glad you're feeling better in yourself as well.

[Hidden]

I was on Leflunomide for three months after 9 months of trying other DMARDS and I lost 35 lbs. which was ok because I was overweight. My weight has levelled out now that I am off DMARDS and started CIMZIA 4 weeks ago. I am working on building muscle strength and getting in shape.

[Kathyfitz12]

The same has happened to me....I have gone from size 14 to size 10 ....as you say expensive on clothes. I asked my rheum you if Leflunomide could be causing it when I had lost 12kg.....he sent me for an endoscopy as I just could n't eat.,all was clear & I feel OK & I,m nit in pain.

I have only been on Leflunomide since April .& it seems to suit me, so I am going to stay on it.

Does Leflunomide cause hair loss? I seem to be moulting!

Has anyone else experienced this weight loss? Does it level out...I don't want to lose anymore.....size 10'is as far as I want to go down to.

Kathy

[Hidden]

Hi

A others have posted this does seem to be quite a big weight loss and, as with all side effects, it is important to talk to your nurse about this. Interestingly I found a study (quite a small one and quite old now) which looked at this issue, you may be interested to have a look at it: ncbi.nlm.nih.gov/pubmed/113....

In response to the question about hair loss and leflunomide, the ARUK leaflet on this drug suggests that hair loss is rare and usually minor.

Best wishes

Lorraine