Meds not working

Sorry, long post. I've had rheumatoid for over 30 years had ups and downs but then found methoxide alongside retuximab infusions every six months or so.

Anyway long story short became intolerant to methotrexate and have now been on sulphersalerzine for nearly a year, hadn't had infusion for a year and low and behold had a massive flare, was given the infusion and I'm now nearly eight weeks down the line and the morning stiffness and pain lasts nearly all day.

I was given a course of steroids and it didn't touch it, it's mainly in my knees and the rhumatology nurse said it's just wear and tear.

I don't know whether to now just get on with it or call them?

Comments

  • stickywicket
    stickywicket Member Posts: 27,764

    Unfortunately, oral steroids won't help 'wear and tear' aka osteoathritis (OA0. Many of us have it because our inflammatory arthritis (RA for you and me) wasn't got on top of early enough. Sometimes it takes a long time to find the right DMARD.

    With OA we just have to help ourselves with a regular exercise regime, sensible diet and, when necessary, pain relief. Why not ask to be referred for physio and / or a Pain Clinic?

    I'd want to know, though, from rheumatology, why you've not had rituximab for a year. Is there a medical reason? Is the sulfasalazine holding back the RA? If not, why no ritux?

    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • Thanks for this. I'll ask re physio.

    I've no idea why they didn't contact me if been "well" all year. I'm not entirely convinced the sulphersalerzine works as well as the methotrexate for me tho

  • GeorgePS
    GeorgePS Member Posts: 4

    Ive been on combination of sulphersalerzine & methotrexate since 2003 which worked really well for many years. Perhaps combination of both may help.

  • Ionepam
    Ionepam Member Posts: 1

    I have just had my 1st 2 Infusions of Retixumab , now just on Methotrexate Injections weekly

    I am in agony 😢😢

  • Sending hugs