leflunomide?: hi i had an appointment with my... - NRAS

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leflunomide?

pam-82 profile image
9 Replies

hi i had an appointment with my rheumatologist yesterday, he is wanting me to start 10mg of leflunomide as he is treating my symptoms as psoriatic arthritis, however i am very unsure of what to do, im 32 and having read thru a lot of post on this site my symptoms seem very mild at this stage i suffer with daily pain in a few fingers (not server) and when i have an outburst it is painful in my ankles, wrists and hands but not unbearable i have been managing with ibuprofen and paracetamol, should i start on this medicine at this early stage to help the later stages that will come or carry on as i am at the moment? any advice would be very helpful! thanks x

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Louise09 profile image
Louise09

Hi Pam, I am taking Leflunomide 10mg and hydroxychloraquine 400mg daily. It is all very scary and the only advice I can offer is: you do what you feel is right for you. I look at it this way, DMARs help to prevent damage to your joints and I don't want any damage so I'll take the drugs!

I'm 42 and was diagnosed officially in 2008 so not much older than you are now and it scared the c**p out of me but with the right support and understanding we can do anything we want. Put your trust in the specialists, after all they have trained for blummin' years so they can help people like us.

Good luck. Lxx

Leflunomide at 10 mg a day arguably isn't exactly heavy duty. I too have PsA and the more I learn about it the more I fear the 'added extras' it can bring, as well as joint damage (which I already have). Everything I've learned suggests that the sensible thing is to take drugs that dampen down the disease as systemic inflammation is not good news for our general health. Starting a DMARD such as Leflunomide as early as possible also gives the best chance of drug-induced remission I believe. I think I probably had undiagnosed PsA for ages and I do wonder whether I'd have escaped joint damage had I started treatment much earlier. Additionally my PsA is very resistant to treatment, I seem to get so far and no further with every drug I try - I often feel okay but the disease is always active. So I also wonder whether it would have been easier to tame if I'd started treatment earlier.

Tinwoman2 profile image
Tinwoman2

Hi Pam, I have been on leflunomide since I was 16, so 30 years and I have not had any adverse results from it. Take it with food, it could possibly help you.

Good luck & I hope you find what works, soon.

Christine

leslaki profile image
leslaki

Hi pam82, I have PsA, I am on Leflunomide 20mg daily. Have been taking them for approx 2 yrs now with no adverse effects, phew. I had been on Methotrexate for maybe 3yrs and was very ill with it. So Leflunomide has been a blessing for me. The meds are managing PsA very well, so I would give them a go Pam

pam-82 profile image
pam-82

hi, thanx all for the advice, im still unsure but im going to have a chat with my doctor and just get abit more info, think im just looking in to it abit to much and scaring myself tho!! x

sparker profile image
sparker

Hi Pam

I feel completley differently, I believe that if you are not sure you need the drugs then wait. I have recently stopped taking my drugs and have found that the side effects were in fact making me quite Ill. I don't think that drugs are the only answer, I think that they are only part of the answer. I believe that a positive attitude, excercise and a healthy diet all have their place in combatting this horrible disease. Good luck with what ever you decide. Steph x

Karen77 profile image
Karen77 in reply to sparker

I agree with Steph. I am following the Paleo Autoimmune Protocol (Sarah Ballantyne's The Paleo Approach, which also focuses on nutrient dense foods, exercise and stress management), and I feel like it's actually working. I stopped methotrexate 3 months ago, and haven't missed it one bit. I've also challenged myself to halve my NSAIDS (still at high dose), and I think that is helping too (the drugs exacerbate leaky gut, and getting your gut healthy is, in theory, necessary to getting your AI under control. Anyway, I recommend this approach to anyone who is anti-pharmaceuticals, or who is at the end of their rope with trying several drug therapies without results. You have to make yourself as informed as possible and do what feels right for you.

reef profile image
reef

Hi Pam,

I think you and I are at a similar stage in PsA. 'Small' pain in wrists, slightly swollen ankles and golfer-elbow but it's manageable. However, when I saw the consultant she suggested sulfasalazine only to change her mind later due to a complication. I already use azathioprine for my other auto-immune skin problem and apparently it can be a dangerous mix. So I've been told to wait and see how my symptoms develop. I have read recently that early treatment for PsA with aggressive doses leads to better results. For me, if it was not for azathioprine, I would definitely go with early treatment.

Good luck.

pam-82 profile image
pam-82

hi, there are so many different views on this subject I am much of the same opinion as you steph and Karen, iam going to go down the more natural route for the time being I think as I class my symptoms as mild at the moment and would like to hold off the more serious drugs until such time i feel i need them. thank you all for your comments they have been very helpful x x

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