Leflunomide

jaesparks

Hi Pip`s (people in pain) its been so long since i have even wanted to talk to anyone about this but today i feel i have some positive input.
I was told just over 2 yrs ago that i had ostio/ruhmitoid and inflamitory arthritis and spent the 1st year in agony trying to keep up with my one year old boy all that aside, did the diets cut out all and everything,didn`t work, took 30mg of steroid everyday (that makes you a nice cheerfull daddy NOT) up to 200mg of diclofenac and lots of codine to help me sleep, and of course the inevitable jabs to stop you totally giving
Life not good, absolutlely no person can understand your pain..........!!!!

Then came Leflunmide 3 months of bloods every week then every two 6 months to come off steroids and diclo haven`t had a jab for 6 months nor have i used codine for at least 4 months.

I feel tired but I AM NOT IN PAIN i know this drug dosen`t suit everyone and it took a long time to get used to it in my system but it is working.

I know there is no cure for this thing but there are ways to hold it off i suppose i`m just trying to say give the drugs a chance and steer clear of some of the crap you can read on the net yes my hair is thinner yes i go for lots of blood tests and some days i feel like **** but I have a quality of life now that i didn`t think i would get back.

I now have fun with my two year old instead of wishing i could please feel free to ask any questions happy to help Jae

frogmorton

Jae

you know I very nearly ignored this thread as I have no experience of thie drug.....but I am so glad I didn't

What a lovely and reassuring story you tell.

I hope it reassures others as is has me and that your healthier life is very very long-lived.

Love band thanks

toni xx

jaesparks

Thank you but i believe this is a marathon and not a sprint

tillytop

Hi Jae

I was so pleased to read your post and to hear of your positive experience with Leflunomide. It's really lovely to hear from people when they are feeling better because often when people feel better they seem to disappear from the forum and, whilst it's good that they perhaps don't need the forum anymore, it does mean that the forum posts tend towards those who are still struggling (if that makes sense).

Really do hope you continue to do well on Leflunomide.

Love Tilly xxx

jaesparks

Thanks Tilly will keep people updated x

Jae

dreamdaisy

I am pleased to hear that it has worked for you: I once spent an entire Easter holiday in bed with the blackout blind down as I couldn't stand the daylight thanks to the lef headache but hey-ho, we are all different. I hope it carries on being as good for you as it has been so far. DD

frogmorton

Bumped up to help mig
xx

dreamdaisy

bumped again.

suncatcher

Thanks for your reassuring story this drug helped me also. It is so reassuring to get a drug which suits Ive had plenty which did not. I do not go to hospital much now i was there every month now i feel pressure is off a little and things will never be perfect but it is a load off. I am pleased it has done wonders for you too enjoy being a mom. Mine is six now and i feel more of a mom. ENJOY JOANNE

mig

Hi everyone,good to hear good news about lef, only been on it three days so dont really know if its going to suit yet.this is only my second meds couldnt hack methotrexate was dreading feeling like that again.Am also on naproxen and hydrocodine.Mig

RA2010

Hi there - I'm another that seems to be doing well on lef although did also have to wait a bit for it to work - have been on it since end of March...

Initially it did nothing, and then my white blood count started decreasing as it did with meth (resulting in me having to come off it) so they got a bit concerned and almost stopped it...I did also have a steroid injection (depo type) 3 weeks ago, and something between all of that (oh and a holiday in the sunshine!) has done wonders! I even forgot to take my medication last night and whenever I've done that in the past have such painful feet the next day without my anti inflammatory I can hardly walk, but today hardly noticed it! It seems to have had the added benefit (side effect apparently!) of losing weight, so good news all round!
:P

nikkinoo

I was diagnosed with PSA in March of this year and started Methotrexate, which didn't appear to do anything to help. So two weeks ago my doctor started me on Luflunomide, and gave me a steroid injection :eek: . Now I guess that I won't have seen any effects from the new drugs yet, but the swelling in my hand has definitely improved, although my toe still looks like it belongs to someone else . What I want to know is if I will ever feel "normal" again... i.e does the tiredness reduce, will the swelling go completely etc. I know this is still really early days for me, and there are some of you out there in a really bad way with this, but when I got diagnosed my Dr told me to research it on the internet... bad move, spent the night crying my eyes out and I've tried to avoide all topics of PSA since. The only time I allow myself to think about it is when I see the DR otherwise I deny it's all happening. The only give away is the pain I'm in almost all of the time.

Can anyone offer me anything positive???

workhousemum

To Nikkinoo

Just read your post. Please don't feel downhearted. I was diagnosed at the age of 23 before having two children. I am now almost 66 and have two wonderful grandchildren and two more on the way, still have pain but manage to get around. Have been on Methotrexate for 20 years, now going on to Leflunomide. Will let you know how I get on. Chin up.

workhousemum

Well can't go on Leflunomide - too much inflammation, it's got to be anti-TNF, even though I had breast cancer 11 years ago. Let's hope all goes well. Should be on it in a couple of months. Will let you know how I get on. Need to get the inflammation down to play with my wonderful grandchildren! :roll:

mig

Hi all,thanks for bumping this post,im feeling positive at the moment im hoping its the lef and not just the steroid jab,start taking 20mg every day from monday have had no probs with it at all,its good to hear someone else has positive things to say about it.thanks again.Mig