Leflunomide.... I'm about 2 weeks in!: I am feeling... - NRAS

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Leflunomide.... I'm about 2 weeks in!

Graceusha1 profile image
10 Replies

I am feeling better! Hope my liver enzymes stay ok,lol

That doctor has given me a diagnosis of inflammatory arthritis

What the heck does that mean? Feel good except for annoying scalp inflammation

Maybe it's all in my head

Lol!!!!! Anyone???? THANKS FOR YOUR FRIENDSHIP!!!! Usha in fla

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Graceusha1
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10 Replies

I suggest you visit the NRAS website. nras.org.uk/ You will find all the information about Inflammatory Arthritis, and many other types of Arthritis. There are several booklets you can download, or send for (free of charge) that will give you all kinds of information and advice. One is about all the drugs you may be offered, including Leflunomide. And don't ever think it is all in your head. It isn't. All the best. xx

Graceusha1 profile image
Graceusha1 in reply to

Thank you so much for your helpful and kind reply! All the BEST! Usha

Glad you are tolerating that drug and feeling better!

As poems says, good info on NRAS (UK nationwide organisation) although treatment in the UK differs from that in Florida.

I had thought MTX was to be changed to Leflunomide at review last week.

But GOOD NEWS! It was not RA flaring since August, but OA.

No sign on ultrasound of any RA inflammation or swelling there.

Permanent RA damage to bones showed up with secondary OA and also unrelated OA.

But it was a good outcome of nearly two years on MTX and hydroxychloroquine for severe double seropositive RA; an unexpectedly good prognosis!

My current dose should be reduced at next review in three months!

Good luck with understanding more about IA. :-)

Graceusha1 profile image
Graceusha1 in reply to

Thankyou!!!!! please keep in touch!!! Usha

medway-lady profile image
medway-lady

I've ben taking LEF for over 3 years, so 2 weeks is very early days yet. It can cause some bad effects that do go, so just be aware it is early days and hopeful but not too over confident just yet. I love it and its put my RA into remssion and has no side effects at all. I even had an operation last year and it was not stopped as it does take 12-14 weeks to work ! x

Graceusha1 profile image
Graceusha1 in reply to medway-lady

Great!!!!!! I am very hopeful!!! Thanks for taking the time to write! All the best, Usha

AgedCrone profile image
AgedCrone

Leflunomide has the side effect for me of completely wiping out my appetite...I'd go all day just eating a piece of fruit & never felt hungry.

So do watch that.....I lost 12kg before I realised what was causing it.

When it suits you it seems very effective...I know a woman who has been on it for 7 years & she cannot understand how it affected me!

Hi Usha my rheumy said same to me at first, some kind of inflammatory arthritis and rheumatoid is most common, so i assumed it was catch all term for all of them eg psa, as etc. not till i had high positive anti ccp blood test that he diagnosed RD. Hope that's a help x

lickum1966 profile image
lickum1966

I am also on leuflomine and your right I feel better than I have In the last ten years but I am reconsidering getting off the side affect are just to much my hair fell out in plugs that did not bother me I just cut it off than I began having headaches severe stomach aches and diarrhea st first I thought I had the flu but II did research and it was the medication I have been ion it 2 mos now my urine looks like orange tea and smells awful so started drinking a gallon of water s day I usually only about 88 0z ‘s a day the 128 oz equivalent to a gallon is makes me fell bloated but the medication is wonderful but it has some really bad side effects one more thing it messes with your teeth I have beautiful teeth I kept up with the dentist all my life and my mouth became very senisative to hot , cold , any food I got ulcers in my mouth the roof up my mouth is peeling and my two back teeth have cracked this all in 2months but my body feels great but I have to stop taking it usually side affects stop after you’re bidy get used to eat but mines are to severe so back to the Rheumatologist I am like so tired of these meds good luck I wanted to let you know in case things Star happing to you and you don’t have to double think yourself it is the leuflomine good med but I guest it is not for me. Read about is as much as u can you would be shock but what do we do we just want some relief some hope.

lickum1966 profile image
lickum1966

I was one of the first patients on Enbrel when it first came out in November of 1998 I waited a whole year for meds for RA there were none when I was diagnosis iit was a mircle drug I was unable to walk Enbrel change my life but I had to come off it gave me a severe blood infection a year later I have been on every thing I will be going on Humira next I hope this will work without problems .

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