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Date: 16.01.2006
From: matthew ludlam

Subject: leflunomide: anyone used it (and what about anti-TNFs)?

My wife has just been moved from sulfasalazine onto leflunomide and we're both frightened by the rather hideous side effects. Has anyone tried it and can tell us of their experiences. Also, is there anyone out there who has been prescribed an anti-TNF drug without methotrexate. My wife still likes a drink and I'm frightened of the long-term effects of taking methotrexate.
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Date: 17.01.2006
From: Trina

Subject: Re: leflunomide: anyone used it (and what about anti-TNFs)?

Hi Matthew,

I've not been on leflunomide but I am on the anti-TNF drug Humira without methotrexate. In fact I moved onto Humira partly because methotrexate wasn't working for me and I didn't feel well while I was on the drug.

It has really worked well for me - it's been the best result I've had with any drugs I've had in the past 20 odd years I've been having to take medication for my RA. Before starting on Humira I was on a cocktail of drugs including quite a high level of steroids. Over time (and with guidance from my doctors) I have been able to come off all medication except the Humira and I feel well for the first time in years.

I know I've been lucky that I have reacted so well to the anti-TNF medication and it is not the same for everyone but if your wife gets the chance to give it a go on anti-TNF she may find it helps.

Only down side - yes, there's always a downside - no one yet knows what the long term side effects are going to be with anti-TNFs (they are a completely new family of drugs used to treat inflammatory arthritis). The signs are good but until they have clinical evidence from a lot of people over a lot of years they can't say there is no risk...

I decided to take the gamble as life was pretty tough before with all the pain and stiffness and I hated looking like a hamster from all the steroids.

I hope your wife manages to find a solution that suits her. Best of luck..
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Date: 18.01.2006
From: matthew ludlam

Subject: Re: leflunomide: anyone used it (and what about anti-TNFs)?

Thanks for replying Trina,
It's really good to know that someone's been able to A, get hold of the anti-TNF drugs and B, get a decent outcome without methotrexate. The fact that you've been able to stop taking all the other drugs is excellent news, as it means there is a real alternative to suppressing the entire immune system (which always seemed a rather heavyhanded solution) - not to mention the benefits of not taking a chemical cocktail.
Would you mind if I ask a couple more questions? Firstly, does feeling well equate to better joint function and less stiffness as well as less pain and, secondly, how long have you been taking Humira?
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Date: 18.01.2006
From: Trina

Subject: Re: leflunomide: anyone used it (and what about anti-TNFs)?

Hi Matthew,

When I spoke about feeling well I wasn't actually referring to my levels of pain or the stiffness etc I was referring to how I feel generally. When you have active inflammation you feel generally unwell most of the time - it's a bit like feeling like you are going down with the flu, you feel fatigued and 'heavy' with no energy and not much enthusiasm for life. I also felt a bit sick and because I couldn't move around very well, very unfit. Added to that I felt a bit 'drugged' (sluggish in mind and body) because of all the medication I was taking.

Getting back to your question - yes the Humira has equated to better joint function, less stiffness and less pain. I can't say I am completely without pain or stiffness though but this isn't due to active inflammation it is due to physical damage that has occured to my joints over the years - sadly there is nothing that can actually fix joint damage as yet so I'll not be signing up for the London marathon just yet!

I know other people who now take anti-TNF medication and after being on the treatment for a while we looked back at before the anti-TNF and were surprised at how much we had got used to feeling unwell that we thought it was normal. It's only when you start to feel better that the thought occurs to you 'My God, this is what not feeling ill feels like!'

I've been on Humira now since July 2003
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Date: 20.01.2006
From: matthew ludlam

Subject: Re: leflunomide: anyone used it (and what about anti-TNFs)?

Thanks for your honesty once again Trina. It appears as though if you are going to take anti-TNFs then it makes sense to do so ASAP in order to minimise joint damage. It's just a shame the NHS doesn't see it that way yet. My wife has a consultant's appointment on Tuesday, so here's hoping they're going to take the option to start treating the disease more aggressively. The decision to pair Leflunomide and methotrexate appears to be mainly down to the prescribing guidelines where all second line treatments must be tried before third line treatments biological agents can be used. Am I being overly cynical in suspecting that the main reason for this pathway is cost rather than clinical judgement?
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Date: 13.02.2006
From: Donna

Subject: Re: leflunomide: anyone used it (and what about anti-TNFs)?

I have had RA for 24 years and have been on aspirin , different amounts of prednisone and methotrexate . methotrexate really helped me but in the last few years I have had to take more pred. in the winter. My Dr. has been pushing a TNF for a few years but didn't seem positive that I could lower my other meds, so I did't want the risk. I finally decided to try Humira last July and I have slowly worked down all of my other meds. I am sbout to drop off all prednisone and have gone down on the aspirin and Methotrexate. Like Tina said I didn't realize how bad I was you tend to ignore alot of the symptoms and struggle on. I think most Drs. go for the least side effect drug first, but they have proven they should treat RA aggressively so their is less permanent damaged. The TNF's are very expensive I am glad I only have to take it every other week. Do other people have burning after shot for about five minutes?
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Date: 09.06.2006
From: Nickie

Subject: Re: leflunomide: anyone used it (and what about anti-TNFs)?

Hi,

I've been on anti-TNF for 3 months and feeling much better generally. But yesterday when I went to see the consultant They want me to stop methotrexate as I'm not working well with it. I'm to start leflunomide asap. I'm nervous about it cos I don't want to change and then flare. How are people finding this drug if anyone is on it? How's your wife doing on it Matthew? Also, the consultant said you can drink about 2 units per day - just be careful with it.
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Date: 24.09.2007
From: Matthias

Subject: Re: leflunomide: anyone used it (and what about anti-TNFs)?

Hi again, it has been a few weeks since I last posted here. Originally I had enquired about Leflunomide, as my Wife had been advised to try it & we were both feeling freaked by the possible negative affects. She didn't go for it in the end, I persuaded her to try 'Litozin'/Rosehip supplements as I'd heard that they were proving to be an effective anti-inflammatory for Arthritis sufferers.

Weeks down the line and another trip to the local mineral hospital, my wife has been advised that Humira should be the next logical step for her, due to the overall failure of Methotrexate (And Litozin) to suppress the symptoms or advancement of her Arthritis.

We are quite afraid of the negative potential of anti-TNF's but accept that the potential benefits must be worth trying for. I was glad to read some positives here in this topic thread. At the stage before the treatment begins, I'm looking around for the reassuring stories and hoping they outweigh the negatives. Realistically, I know that how a medicine performs, is often subject to the unique physiological chemistry of the person taking it.

Anyway,I'm rambling, I'll drop a line in a few weeks to provide a 'progress' report on how my wife responds to Humira. Hopefully it will be another positive story.

Cheerio.
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Date: 30.09.2007
From: Kish

Subject: Re: leflunomide: anyone used it (and what about anti-TNFs)?

Hi,
I have been prescribed HUMIRA but I am in the States so no dealing with the NHS. The medication IS expensive here too but if you have good Insurance then it's no big deal - the finance side is another matter here in the States. Getting back to HUMIRA - I am still 50 - 50 on wether to take it or not (currently on SULPAHZALISINE) - see my other posts. Although I do not have RA I do have PA and my specialist gave me 3 alternatives and one was Humira. I prefer to take this as you only take it every other week and comes as prefilled injection - you just zap it on! Anway here is an execellent site - although it is States based it is very useful regarding info on TNF's or BIOLOGICS as they are sometimes called. My only concern is the LONG TERM effect - I've heard great things about this drug though. You can look at it this way - Drugs any drugs have side effects. The difference is that BIOLOGICS spare the body of broader side effects than drugs such as Methotrexate according to the PA foundation.
Here is a link to the forum - this is a very active forum - although it specificaly deals with PA most questions/concerns on HUMIRA and other biologics are discussed by members. Hope this helps.
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Date: 30.09.2007
From: kish

Subject: Re: leflunomide: anyone used it (and what about anti-TNFs)?

A site that deals with all types of Arthritis is the JOHN HOPKINS site - this site is good too - you can ask an EXPERT a question regarding your arthritis, medications concerns etc...try it heres the link:
http://www.hopkins-arthritis.org/arthritis-info/
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Date: 30.09.2007
From: Kish

Subject: Re: leflunomide: anyone used it (and what about anti-TNFs)?

Forgot the link to my previous post - here it is:
http://www.psoriasis.org/treatment/
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Date: 08.10.2008
From: Kirsty

Subject: Re: leflunomide: anyone used it (and what about anti-TNFs)?

Hi Matthias I've just turned 30 and was diagnosed with RA about 7 years ago. I've been on Leflunomide for about 6 months now and i'm about to start Humira as i have a fair amount of damage in my wrists and the inflammation and flare ups aren't controlled with what i'm taking already. I also take sulfosalazine and diclofenac. I had been on Methotrexate when I was first diagnosed but this made me very sick even reading about it makes me feel nauseous, and didn't seem to have much of an effect after a few years.
I enjoy a few drinks with friends and have carried on as I did before I started on any of the medication. I have regular blood tests to check for any effects the meds might have on my kidneys or liver and therefore feel I would be aware of any effects the alcohol might be also having. Obviously this isn't a medical opinion but i'm letting you know my thoughts as this was one of the questions you raised earlier in your topic.
I will be asking my Doctor again about this when I start on Humira, and can update you if this helps?
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