Do I or don't I?

Hi everyone, hope you are all doing ok today. I am not sure what to do - I have had to come off Leflunomide as I lost the feeling in my tongue and the only taste I seemed to have was of salt. Have been off it a month as advised by my consultant and my tongue is back to normal, still have some saltiness though, but they want me to start now with Sulphasalazine but all my joints at the moment seem to be fine so am reluctant to take it. I am also on a clinical trial for an oral biologic and have been for 18 months plus take Hydroxychloroquine and Etorocoxib (Arcoxia) so do I really need one more? I started the Leflunomide in December last year as my hands and wrists were getting bad. Any advice would be very welcome.

6 Replies

  • I would think your Rheumy is aware that you're participating in a trial & has made his decision to start you on SSZ with that in mind. I'm minded to go along with your Rheumy, he'll have checked your latest bloods so will be aware your levels are ok & considers itls still necessary to try another DMARD. Think of it this way it's not really one more because it's replacing the LEF so you're on the same amount of meds. ;)

  • Hi Nomoreheels, thanks for your reply. Yes I think you are right as you say they have checked my bloods and should know if it's required. Everything is stable a the moment also the weather isn't bad which is helping keep it all good. I think Sulpha takes a while to get into the system and is a slow process so now is probably a good time to start. Just hope I don't get another nasty taste as lots have reported this but fingers crossed it will be fine for me. Xx

  • As you say you're in a good position actually, not really feeling you need the SSZ is a bonus, your joints aren't screaming for it to work! Try to stay positive & you'll be ok.... hopefully!!! :D

  • Looks like I might have spoken too soon! Decided to make a pavlova for Sunday's bbq at my sisters and used an electric hand whisk and oh boy have suffered in my left wrist since and odly my right shoulder so looks like the Sulpha will be needed! Wishful thinking that I would get by without it!

  • I'm sorry, it's hard to accept the need for another drug, isn't it? I keep wanting to just stop...and then I have a day or an event that reminds me it's not really an option. Best of luck on the Sulfa.


  • Thanks Azabat. Yes if only we didn't need any of them! I was diagnosed 2 and a half years ago and its taken a long time to accept it. I guess I was hoping I might get away with one less drug but no chance!

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