Lefluonomide

[Sjhoney]

Hi, might be starting on this drug, depending on blood results. Any reviews, good or bad? Ta 👍

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[AgedCrone]

Brilliant if you want to lose weight .....it completely obliterated my appetite, but had no beneficial impact on my RA, but many people do really well on it.

Hope it suits you...

[Sjhoney in reply to AgedCrone]

Thanks! I’d like to lose weight but I do like eating 🤨

[jojo_71 in reply to Sjhoney]

Hi!

I was well on it.. But had really bad cramps.. Etc! So also lost loads of weight.. But my specialist took me off it, when I went in and could not sit still. Lol.

I've not heard of other people reacting like that tho.. So good luck! As did work really well. Xx

[nomoreheels]

You did ask for bad as well. I had to stop this, or rather tell my Rheumy I was stopping it. I've had Carpal Tunnel Release before so know the symptoms & they started bilaterally early on. I then started with zinging in my legs that got worse so she ordered neurology tests. I didn't,t associate it with having started leflunomide but the Neurologist asked from my list I gave him which was most recently introduced & I told him leflunomide. He suspected it could be that. The tests confirmed what I reported & even though my Rheumy insisted they were rare side effects I said as LEF wasn't helping anyway I'd take my chances stopping it. She ordered repeat testing which showed improvement in all areas previously tested & a few weeks later they were all far better. I now have no symptoms at all.

It also raised my normally ok blood pressure. It is a known symptom & you're asked to have it taken for around six weeks when you have new drug monitoring blood tests. Mine settled after around a month I think.

I'm sorry it's not a positive experience from me but as my Rheumy said they are rare side effects so hopefully you'll have nothing but positive results. If it helps at all, especially should you find you do started having problems, I posted about it at the time healthunlocked.com/nras/pos...

[medway-lady]

One comment great stuff !

[Flatstanley]

It raised my blood pressure and I had to come off it

[Neverending63]

Raised my blood pressure and as I was already taking antihypertensive meds’ was not a good thing so I had to come off of it as well. Sorry it isn’t positive but you maybe fine on it.

[vonniesims]

worked well with Methotrexate for years, but it raised my blood pressure and my hair became very thin.

[Need2knowN]

Best one I’ve been on so far !

[Suzy-P]

I was scared by all the possible side effects but after thinking long and hard decided to give it a go - that was about 18 months ago and it works for me (combined with methotrexate). Maybe I have been lucky but we are all different. Another friend of mine has been on it for years - reckons it’s the only drug that has worked for him long term.

[Sjhoney in reply to Suzy-P]

That’s good to hear. Got a letter from my rheumatologist today and my inflammation is still high so am going to give it a go, nothing to lose I reckon 🤨

[Beviejon1]

Been good for me.

[ROBERT_CARMICHAEL]

I took leflunomide for a period in the 1990s and do not remember it doing much good, however I have bitterly regretted taking it ever since as it caused a peripheral neuropathy of my feet and lower legs. I get all sorts of symptoms of which pain has been quite bad in bed, also pins and needles, very sharp pains that feel as if I have stepped on a piece of broken glass etc. Gabapentine helps a fair bit but never gives 100% relief. I would say to Sjhoney that I may well be an unfortunate exception .

[Slife]

It worked fairly well for me. Watch your blood pressure though. Mine went though the roof (ordinarily perfect) even on bp meds. Had to stop it. Good luck.

[katrina1961]

hi im taking it but having to many side effects my hair falling out bad