Still trying to keep up the optimism

[HeadInASpin]

Hi everyone, some of you have been kind in giving me advice over the last few months when I’ve been finding things difficult so thought I’d post an update. I finally got my review appointment yesterday with a consultant I’ve not seen before, who concluded that, with a DAS28 still over 6, the methotrexate isn’t working. She’s added Leflunomide and said to try it and see how it goes and be optimistic! Whilst I am usually a sunny and optimistic person I feel my glass of optimism is actually quite empty at the moment so I’m looking for a refill. Has anyone got any tips on how to maximise success on these two drugs or keep side effects down to a minimum? I’ve been tolerating 20mg of MTX reasonably well so far.

[AgedCrone]

To be truthful thinking too much about side-effects will not help…..many people do really well when something is added to methotrexate…..so although it is not easy do - try to think positively. …& don’t get too depressed if you don’t miraculously feel wonderful once you start Lfl …..that second drug can take up to six months to kick in.

As is often said here, RA is a marathon not 100M sprint. When I was first diagnosed, I was always very thankful it was back in the 1990s when a lot of new drugs were coming online….. I went through many DMards and in 2016, I went onto the biologic Rituximab and I haven’t looked back since then…..but I was diagnosed in 1997, so you see what I mean about marathons?

Just take it month by month,& try to be grateful to be diagnosed in the 2020s, not in the last century….when people really did have a hard time of it.

Hope the Leflunomide is a success…& please do stop thinking about side effects!

[Amnesiac3637]

Agree with AG. Side effects are usually transitory whilst your body works out what the hell it is you’re now feeding it and as soon as you build up a tolerance the usual ones like nausea/diarrhoea will ease off. If you’re unlucky the new drug won’t suit you and after a trial you may have to try another. It is a marathon not a sprint as AG so rightly says.

When people look at the side effects of drugs don’t forget that every single one that anyone has ever experienced has to be listed due to the ‘don’t sue me’ culture but if it says 1 in 10 people get a side effect, nine won’t !

If you’re doing well on MTX and Lef is added you may find your glass is brimming over. It won’t be anything you’ve done or not if it isn’t and you can’t really make a difference to how you respond apart from the usual caveats of eating well, getting enough sleep and keeping down stress, etc. Do hope you do well, stay optimistic and best of luck!

[HeadInASpin]

Thank you. I'm not looking for problems I'm just desperate to get the most out of any treatment offered. I really appreciate your wisdom and I'm going to give this treatment a chance, I really am so that I can enjoy my beautiful grandson.

[sylvi]

I agree with what has been said. Give the drugs a chance and maybe you will get some benefits from the drugs, xxx

[Beata0102]

Hi HeadInASpin. I take Methotrexate 20 mg together with Leflunomide 10 mg and Etoricoxib 60 mg. So far I have no side effects and I feel good.

[HeadInASpin in reply to Beata0102]

Thanks for the reply. Like I said it's more the success than the side effects that I'm interested in, so it's great to hear that you're doing well. Long may it continue for you! I've felt so poorly this last year that if you told me standing on my head would work, I give it a go! 😆

[ragurl]

Give it time to build. I am taking 10mg daily of leflunomide with Humira. It makes the Humira work better. It took a few months. I have been on the combo for 15 years with Celebrex and low dose prednisone 5 mg. My quality of life is great. I have had RA for 35 years. Good luck