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lucrezia
#1 Posted : Thursday, August 26, 2010 1:55:59 PM Quote
Rank: Newbie

Groups: Registered

Joined: 8/26/2010
Posts: 1
Hello to everyone here.
Just joined though I have had RA for some 10 years. Was pretty well controlled with Sulfasalazine and celebrex. last year suddenly got much worse with ankle problems which have meant i can no longer walk any distance without pain. I'm now going to begin Leflunomide and have been given an aircast boot to support the ankle which means I can now get out and walk. This has made a big difference and the exercise means I am sleeping better. Anyone care to share their experience of Leflunomide? It sounds a scary drug, though the RA nurse calmed a lot of my fears today when she explained it all to me. I think I scared myself silly by reading a lot of stuff on the internet.
Anyone got experience of any of the herbal/ nutritional supplements which are supposed to help this condition?
Its great to now have access to this forum and i wish I had joined the NRAS years ago!
smith-j
#2 Posted : Thursday, August 26, 2010 2:28:29 PM Quote
Rank: Advanced Member


Groups: Registered

Joined: 12/3/2009
Posts: 714
Hello

Welcome to the forum but sorry you have RA. This site is brilliant. There are many people on here who can offer you advice and comfort and there is always someone who has a similar problem or experience.

I tried Leflumonide but I am afraid I did have terrible headaches with it and had to eventually stop However, I know where are many people on this site who are successfully using this medication. I do think it is a case of trying out these medications. This could be the one for you. After all what have you got to lose and anything to lessen the pain is worth a try.

I do not taken any complementary medicines as I rattle enough with what I have take as prescribed medicines. My Rheumy Consultant did say to me not to bother with anything else other than what he prescribes. He also said forget the "diets" for RA. He said if they worked then they would be available on prescription!!

Keep posting and once again welcome.

Jackie
xx
Lorna-A
#3 Posted : Thursday, August 26, 2010 2:43:06 PM Quote
Rank: Advanced Member


Groups: Registered

Joined: 3/8/2010
Posts: 914

Hi,

I'm Lorna married to Ken and have 3 daughters. I have had RA for almost 3 years, I started out on the triple therapy and keep quite well now. Sorry you have RA but glad you have found us on the forum. I do hope they get the right medication for you soon and you see a big improvement. Take care Lorna Smile
dorat
#4 Posted : Thursday, August 26, 2010 3:20:37 PM Quote
Rank: Advanced Member


Groups: Registered

Joined: 12/3/2009
Posts: 3,157
Location: Huddersfield
Hi, welcome to the forum but sorry you have RA!
I am 60 and have had RA for 9 years, now on mtx and humira.
I have tried leflunamide, on its own and in combination with mtx. It didn't help my RA at all but there are lots of people who do really well on it, we are all different.
Hope it works for you.

Love, Doreen xx
Kathleen_C
#5 Posted : Thursday, August 26, 2010 4:30:14 PM Quote
Rank: Advanced Member


Groups: Registered

Joined: 12/3/2009
Posts: 1,689
Location: Durham
Hello, and welcome to the forum - I`m glad you`ve found us!

I`m probably not the best person to ask about leflunomide, as it did nothing to help my RA, and I had to stop taking it as it was playing havoc with my liver. It also gave me very bad hot sweats, which apparently is a fairly common side effect of that particular drug.

Having said that, it works well for some people, so I hope it does the trick for you.

Take care,

Kathleen x

LynW
#6 Posted : Thursday, August 26, 2010 9:04:10 PM Quote
Rank: Advanced Member

Groups: Registered

Joined: 12/4/2009
Posts: 2,127
Location: Thornton Cleveleys
Hi Smile
Welcome to the forum. A great place to be for support and information; lots of folk, lots of knowledge and a wealth of tried and tested experiences!

I'm Lyn, married to Mike, and we have four children, Abby 22, Ian and Jake 17, and Louis 15. All four in various stages of education! We live in Thornton Cleveleys in north west Lancashire. I was diagnosed with sero-negative RA 22 years ago and have since run the gamut of medication and had several surgical procedures along the way. Currently on Enbrel, Prednisolone and Naproxen and a jolly assortment of pain killers! Just trying to get a recent flare under control after cessation of methotrexate (due to neutropenia) and temporary stoppage of Enbrel for an op. All good fun isn't it ... not!!! Heyho!

I too have had Leflunomide but only for 3 months as it just wasn't doing anything for me. You may have better luck, it's a case of finding the drug that is right for you, which is one of the downsides as it can take so long. Fingers crossed for you. All RA drugs are toxic and come with huge lists of possible side effects, the thing is they are just that, possible so please don't worry too much about that.

I believe the only 'alternative' natural supplement which has been tested and found to have some effect on inflammation levels is the Omega 3 fish oils. Generally speaking others are not worth even considering and are extremely costly to boot. My doctor has always said "if they come up with anything I will be straight on the phone to you". Needless to say I'm still waiting but not holding my breath! It is generally advised not to take 'natural supplements' without the consent of your doctor as they can affect the take up and absorption of certain prescribed drugs.

Do keep posting, look forward to getting to know you!

Lyn x

My son, Ian, completed the BUPA Great North Run on 15th September running for the National Rheumatoid Arthritis Society (NRAS). You can read his story at http://www.justgiving.com/ianlukewilson

Rose-B
#7 Posted : Thursday, August 26, 2010 10:25:31 PM Quote
Rank: Advanced Member


Groups: Registered

Joined: 4/20/2010
Posts: 1,749
Location: Somerset
##Hello and welcome

I am Rose from Somerset aged 56. I was diagnosed end of 2008.

I have tried mtx and leflun but neither were suitable to be. Leflun gave me awful headache nearing
migrane/ However lots on here that have found it sucessful

Keep posting and good luck

Rose
Julia17
#8 Posted : Thursday, August 26, 2010 10:32:14 PM Quote
Rank: Advanced Member


Groups: Registered

Joined: 2/18/2010
Posts: 1,098
Location: farningham kent
Hi Lucrezia

A big welcome to the forum, glad you have found us !

I have been on leflunomide since Feb this year, I was fortunate not having too many problems. Had bad headaches for few days but used cold flannels and as I was feeling really flu like started taking it before bed and all seemed to settle down, it may be worth checking with GP on that point first. Really interesting that Kathleen has posted about really bad sweating, I have been getting it just recently, so now I know the reason why. Unfortunately it hasn t worked so now being put forward for infliximab. I only take omega 3 oils, I take the super strength, it is quite expensive however Holland and Barrett have been doing a good deal on their internet site.

Wishing you well,

Julia x
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