Hi, this is my 1st post. It is surprising how many people are suffering which makes me feel i'm not alone. I am  57yrs old and have had R A since i was 28. Tried everything like you do as you tend to run out of options. Been on a 5 year drugs trial but am currently having 6 monthly infusions of Rituximab for the last 2 years. Under control but still room for improvement.

19 Replies

  • Welcome!

  • Welcome to our club. XX

  • Hi & welcome . I had my second infusion of this year  last Friday. My first two last summer , willing it to kick in very soon .xx

  • What infusion are you on then ? I have had my fair share over the years. My only advise would be to be patient as it may well take a few to see and feel the results. I know it's "easier said than done" - lol.

  • I'm on Rituximab infusions & take Leflunomide .xx

  • I'm also on Leflunomide which has just been put up to the max dose of 20mg. It is however making me have 3-4 flare ups a week instead of 1-2. The hospital has agreed to go back to my normal dose of 10mg. I am waiting for my next infusion booked for June.

  • Hope June infusion goes well for you xx I take 20 mg of Leflunomide , that's what I've been on since the start of them .I have one of those tired out but not done a lot days , just having a cup of tea & then back to bed & read awhile . New day tomorrow. Have a good as it gets weekend & hopefully some sunshine .xx

  • Hiya! You're definitely not alone - 690,000 of us in the UK apparently. You've had RA a long time, do you have much bone damage?  I developed it when I was 23 so can sympathise with you. It takes its toll in so many ways, not only the physical. I hope the Rituximab has made life a whole lot better. 

  • Yes lots of bone damage mostly done in the early years. Time was wasted with Diclefenic and took too long to get on top off. I still consider myself lucky for some of us are in wheelchairs now. I've had a TKR, big toe straightened with metal pins in, all knuckles replaced on one hand and part of shoulder bone shaved down. Still manage to work part time.Yes i agree it takes a toll on you physically and mentally that nobody tells you about. It's a constant battle of wills too lol.

  • Welcome to the club.So pleased you have found something that works and you keep well

  • Thank you for your kind words. Hope you are keeping well.

  • Just to add my welcome. Well, you're an old hand at this so I'm sure you'll have lots of experiences to share! I hope you feel less alone being here with us, there's always someone around to talk to, discuss options, rant at or just have a laugh, sometimes inadvertently but nevertheless it can brighten the day. 

  • Thanks for your welcome. Great feeling to know so many others out there especially as there doesn't appear to be a group that meets within my area.

  • Welcome!!!  I started a few weeks ago and found out like you, so many folks suffer with this disease, we're not alone at all.  Anther thing that surprised me is on how good some meds work on some folks and not at all on others, especially when it comes to side effects.  Some people have a real battle and some none at all....go figure?  Anyway, I was on methotrexate for like 20 plus years both pill form then injections.  Well, finally the methotrexate stopped working so I went to other meds for a few years.  Well, after a few years I Thought I'd give methotrexate a try again because it worked so well for so long and it worked great for like 3 years.  So?  Just a thought, maybe you could go back to an old med in the past that worked good for you, of course under the supervision of your Rheumatoligist.  Blessings and welcome once again to the club.

  • Thanks. Good idea to possibly try old meds again. Gold injections were the longest meds taken - 7 years. Always have trouble with bloods after a while. Hence, i now have a needle phobia. I'm a baby and still have to look the other way lol.

  • Quite a nice relaxing piece of music. Brought back memories of years ago walking our dogs in Cannock Chase.

  • I do like your last sentence as it really sums it up - 'under control but still room for improvement'.    I think we have had it long enough (I started at 19 and now 49) to know we will never be perfect but that is still the dream.   Hope ritux keeps working for you.   Farm

  • Thanks for your concern. We may never be perfect but who want's to be ? It's what makes us a special individual person lol.

  • Hi and welcome I only joined a couple of days ago everyone's really nice on here great people x

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