leflunomide: Hi folks, I was started on leflunomide... - NRAS

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leflunomide

tillyrose
tillyrose
21 Replies

Hi folks, I was started on leflunomide about 8 weeks ago and I am sure you will all think I am crazy but has anyone noticed that they suddenly have a lot more wrinkles and lines while taking this, I have even had a couple of family members comment on it, the nearest I can come when trying to find anything out is that it can cause dry skin but that's all it refers to, they are on my face by the way, hope someone can shed some light on this, sophie.

21 Replies
oldestnewest
notsochunky

Yes when I look in the mirror I now see the face of an old women. My hair has gone white as well, and it is thin and like wire. Just thought it was me.

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tillyrose

Hi, I am so glad that you think it too, I was wondering if I was just being daft,I have to see the specialist nurse at the end of july and I am going to ask to go on something else, its bad enough the pain we go through without medication ageing us even more. best wishes to you,sophie.

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medway-lady

No thats an odd one, no offence intended but has your eyesight improved ??? lol seriously though dry skin can make fine lines more visable so I'd try applying more moiusture cream and give it a few more weeks. I loved LEF it put my RA ito remission until Omeprazole killed my kidneys so make sure you get the blood tests done if your also taking that.

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charisma

Yes, it wrinkled my skin everywhere, caused loads of skin cells dropping off everywhere, embarrassing; thinned my hair, dried my mouth and eyes. Been off it since 21st June and already a big improvement.

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tillyrose
tillyrose
in reply to charisma

hi there, seeing your reply has now made me realise what the problem is with my eyes, although I connected the wrinkles I didn't think about my eyes, since being on leflunomide I have hardly been able to wear my contacts at all, my eyes have been so dry, I have had to take them out after a couple of hours and no amount of drops make any difference, one more reason to come off it I think, best wishes sophie.

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AgedCrone

Are you eating & drinking as normal? I found on Leflunomide my appetite disappeared completely & I lost about 2 stone in 3 months.

I don’t think my wrinkles got any worse though.....

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tillyrose
tillyrose
in reply to AgedCrone

hi aged crone, no my appatite has stayed the same , shame I could do with losing a bit of weight, best wishes sophie

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AgedCrone
AgedCrone
in reply to tillyrose

It’s odd .....if you need to lose a bit of weight drugs seem to put it on....I could do with a few more pounds & a lot of my meds have made me lose weight!

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slou222

I didn't notice more wrinkles but it definitely has made my normally very straight hair look like I've had a perm. It's so strange! I read someone else had the same side effect...I thought I was crazy. I've been on leflunomide for 4 years.

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Jesnaskah

Hi,

I wouldn't doubt it. I tried 3 out of the 4 DMARDS, one after the other for about 4 months while on Prednisone the entire time. Ended up on Prednisone for a year and a half.

I look like I've aged 10 yrs in my opinion. I went from having a jawline to jowls, my mouth curves downward instead of up like it used to, and my cheeks have gotten so lax. Even my skin is not taut anymore, everywhere on my body, not just my face. I have weird fat pockets and my skin is just bad now. It's really sad. I'm in my 30s. AND I know we change as we get older, but I don't think it's "natural" for all this to have happened within a year and so quickly. It's gotta be the meds.

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tillyrose
tillyrose
in reply to Jesnaskah

hi jesnaskah, this is exactly what seems to be happening to my face too, its really depressing, I know that prednisone can cause fat pockets and moon face as they call it, but I am only on one a day and have been since before Christmas, that's why I am positive that its the leflunomide which I started 8 weeks ago. I will definitely be stopping it now, but just hope the next one I try will not have these effects, best wishes to you, sophie.

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Jesnaskah
Jesnaskah
in reply to tillyrose

Thank you Sophie! Wishing you the best as well!!!

Just wondering, when you say 1 a day, do you mean 1mg of Prednisone?

Also, when I first started taking it, I was really paranoid about the weight gain so I avoided, carbs, sugar, and fatty foods, and especially salt!

I did really well for a few months but couldn't keep up that lifestyle much longer. I had the moon face and although it did go down some, not sure if it's all gone yet, I feel like I'm coming out of this looking a whole lot different. But I think if you're super careful with what you eat, it will definitely help with the weight gain.

I was only able to tolerate lef for 8 days, it gave the most ridiculous neuropathy in my limbs. And everyday was getting more and more intense. No thank you!

MTX, I was in for 2 months and I just couldn't deal with the hairloss.

Lastly, plaquenil (hydroxychloroquione), I tolerated for about 2.5 weeks but I was in Hawaii at the time and it was causing me to have skin rashes as it was interacting with the sun (at least, for me) and then my neuropathy started creeping up again, so I quit.

I then decided I'd just stay on Prednisone since it technically made me feel the best. When you're going through the pain we have, you just want to get rid of it no matter what, and that's how I felt with the pred. It did just that.

Please let us know how you're getting along on your new med. I really hope it does wonders for you and don't have severe negative side effects.

Xoxo

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Pawz4me

I've been on leflunomide for a little over six months. The only side effects I noticed were a tiny bit of vertigo and a tiny bit of neuropathy-like sensation in one big toe. Those were within a month or two of starting it, and both went away within a few weeks. But we're all different, so I don't doubt what you're experiencing may be related.

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amatrx

I was diagnosed with RA 3 yrs ago and fibro about 3 months ago.

Now that you mention it, I am noticing a difference in the thin lines around my mouth and cheeks. I was terribly sick while on this med experiencing vertigo, off balance, severe diarrhea, nausea, and fatigue. I was finally taken off this med about 2 weeks ago and not taking any RA med at the moment. I am taking a med for pain and inflammation, and something for anxiety to help me sleep. I'm experiencing terrible pain in my hands, wrist, elbows, and shoulders. Also have pain and swelling in my ankles. My blood work showed my white blood count lower on each visit. Ill go back next month to decide what coarse we'll take from here. I'm terribly anxious and depressed bc we can't seem to find something to help me. This is not for sissys! I'm a very active person and can't do half of my old routine. What's hard is no one understands. I still try to do the work that I always have but the pain I endure later is so painful. I'm a cake artist and love my work, but I'm sure ill have to retire from this soon. Prayers for all of you suffering from this disease that there seems to be no answer for.

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tillyrose
tillyrose
in reply to amatrx

hi amatrx, so very sorry to hear the pain you are in , I presume you have been tried on methotrexate, iwas on that for a long time but had to stop it, I still got a lot of pain but it stopped me having flare ups which was good and the pain was manageable, I went for a whole year without being on anything because the new consultant refused to believe the agony I was in, I eventually completely lost it when I saw him and from then on he was different and hes trying me on other meds,leflunomide is the second one I am taking now, but it looks like I will be stopping that as well as it hasn't had any effect yet in any case, all the best ,sophie

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amatrx
amatrx
in reply to tillyrose

Prayers for you!

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Hezekiah
Hezekiah
in reply to tillyrose

Well done for losing it, sometimes it's the only way to effect change!

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RA22345

This is all very interesting. I switched from mtx to lef a couple of years ago and my skin has aged enormously since. I've put it down to ageing and skin drying out, but maybe drug related. I have also had real issue with dry eyes and had to take loads of medication for that. Costing a fortune in moisturiser and eye drops, but the leflunomide does keep my RA down.

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Girtonian

Yes, I've also noticed my face has aged, with more lines round my eyes and mouth, and it looks a bit jowly too. I'm 61 so thought maybe this sudden aging was to be expected, although I did wonder. Also I'm now very prone to bruising on my legs, arms, tummy, from things that wouldn't have caused bruising before. It's embarrassing to wear a dress or short sleeves because of it. And thread veins have started appearing on my face and chest, and the varicose veins on my legs are getting worse and appearing in places I didn't have them before. I also have dry eyes (I had that before, but I think it's got worse). Plus, uro gynae problems - dryness and atrophy - Which got radically worse about the time I started taking leflunomide (January this year ). I am only on the 10 mg dose of leflunomide as 20mg gave me high blood pressure and a rash. Also VERY dry skin on my lower legs. I started sulfasalazine in May but after 4 weeks realised it was making me feel low, anxious, tearful. Thankfully that improved when I came off it but I can't say I'm on top of the world! Just trying to stay positive. I was on Humira for 17 years and it was fab, but can't have it any more as I had breast cancer last year and the protocol says 'no'. I also keep to a gluten free and nightshade free diet, which helps me with my RA and hypothyroidism. (Hashimoto's) I hope that helps.

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Girtonian
Girtonian
in reply to Girtonian

Update- came off leflunomide a few weeks ago (fed up with feeling down and depressed, BP high, decided to use some Humira I had left from before my breast cancer treatment last year)and my uro gynae symptoms (dryness, atrophy, burning pain on sitting) are much improved. Might be coincidence but I’m pretty sure the symptoms started when I started on leflunomide in January. I thought they were related to breast cancer treatment I had last year, but now not so sure. I’m seeing a new consultant in October, who I’ve heard may approve me going back on Humira. I really hope so. I always felt so well when on humira.

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embroy

I have started Leflunomide about a week ago, still getting used to it, but yesterday I was very tired, don't know if it is the drug, or had a hectic week. Try putting vaseline when you go to bed at night time, might help, and have lots of water as well.

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