Update to is there an equivalent alternative to methotrexate

[Garnacha]

Thanks to everyone who replied to my post yesterday, sent email to private consultant & he's just rung me.

With regards to my arms & how it looks as if my skin has bled he said its due to: sun exposure over the years especially as I'm fair skinned, steroids & medication.

With the pins & needles it's neuropathy possibly caused by lefluminode, the option was to stop it (which I wasn't that keen on as I do think it was starting to work) & go onto sulfazine, I was worried that as this can take up to 6 months to work I'd be back at square one but he said that lefluminode can take a while to get out of the system so potentially could still help whilst waiting for sulfazine to kick in however, we're going to try reducing lefluminode down to 15mg instead of 20, if there's no change with pins & needles or the pain gets worse I'll have to try sulfazine.

With the pain in my back, side & front he said it does sound like inflammation & not caused by methotrexate which is a huge relief, if there's no improvement in a couple of weeks it maybe worth having physio or seeing a Chiropractor (I have to say though if it gets any worse I'll get back in touch with GP).

I mentioned that I believe the NHS rheumatologist also conducts private consultations at spire, he knew this consultant & is quite happy to give him my notes if needed.

Good phonecall although I'm not convinced the pain in my back, side & front will improve as it started when I was already on methotrexate, time will tell x

[nomoreheels]

Generally a good call then. I may have mentioned this before but I came off leflunomide because it caused peripheral neuropathy & bilateral Carpal Tunnel. Your Rheumy was on the ball there I’d say, unlike mine who somewhat reluctantly initially referred me to Neurology for tests whilst still taking it & repeat ones after I halted it, proving the LEF was the cause.I hope your mid pain eases & goes soon.

[Garnacha in reply to nomoreheels]

Yes it was you that said it could be lef that causes low b12 & neuropathy, so thank you, I did tag you in my post before as I couldn't remember if it was yourself, helihex or someone else 🙄🤣 he's already sent the letter to gp & copied me in he's very good just a shame he doesn't do NHS anymore x

[medway-lady]

I was warned about skin issues when given steroids for an AKI. Luckily was only for a few months so no long lasting effects. I didn't get on with MTX and went on LEF which worked well for a long time but now on Azathyoprine which also worked well for a long time on its own without any side effects as well. Although now with a biologic. I had horrid pain for a few weeks (12 or so) with LEF but then one day they went and I went into remission but it was in my hands and wrists which is where the RA is most apparent. How long have you been on the LEF as it might be same sort of thing as the drug gets to work on where the RA is mostly active. I mean I don't know but the pain in my hands made me cry and was worse than the RA and I could not hold a cup some days but it did just suddenly go and the world had colour again. I really hope you're sorted out soon and pin free as asap.

[nomoreheels in reply to medway-lady]

Love that analogy - the world had colour again! It does feel like that when there's a breakthrough in pain. Definitely a monochrome day for me today!

[Garnacha]

Thank you, I've been on lef since March & Increased the dose from 10 to 20mg in September, until I got the chest infection it seemed to be starting to work, the pain in my ribs has been & still is so bad that like you I've been in tears, just hoping things start to get better ASAP with the reduction to 15mg of lef x