Hi all sorry not been on much been having a bad time. Sitting here having my third steriod infusion. Hopefully this will tie me over while I wait for an appointment to start rituximab. God I hope this one helps. I am so frustrated at the moment. On a good note I am starting pain clinic 10 week course in couple months had the introductory session yesterday it's all group sessions which I usually find difficult but I found it a lot more comfy then I thought so all positive there

Hope your all doing well. Look forward to hearing from you :-)

4 Replies

  • I had 3 steroid infusions in one week, all 1,000 mg each. Had another two a few weeks later. Good luck with Rituximab, I have a couple of RA friends doing very well on it. xx

  • Hiya Jo. I'm sorry you've not been any better, really hope the steroid infusion takes over until you start your rituximab & more importantly it's the one that works for you. More positive about the pain clinic though, they can be a very helpful service for many. x

  • Hi Crazyjo I hope the Rituximab works for you I know a lot of people who are on it with great effect,unfortunately I had a bad reaction to it,so I am now on Abatacept but still struggling with the pain although I have a bit more movement,can't have everything lol. It has taken my Consultant 12 years to refer me to Pain Clinic for the pain in my neck(no pun intended) the Doctor I saw was very helpful he gave me injections in my shoulders which have eased them but as yet no joy with my neck,go back in a few weeks but I'm more hopeful for the next appointment. Hope every thing goes well for you xx

  • Hi Crazyjo, Ritiximab has worked for me when I had very out of control RA and constantly high inflammation and I doubted anything would bring it down. I had failed two anti tnfs the previous year in 2013 or should I say they failed me (Enbrel and Humira) and during this time I went so downhill and got very bad finger joint damage as well as other areas. I started Rituximab in April 2014 and my first duo of infusions worked very well till April 2015. That's another story to be posted soon, but it started to work noticeably after 6 weeks and took another few months to to return me to strength and more mobility. By November I was a different person but little things improved all the time since the infusions - I suddenly found myself reaching down for a bottle in a cupboard ( no not wine LOL!!) or reaching up for something I would not normally be able to do. Rituxi unlocked the madness of stiffness and constant flashing pains. The infusions are not painful or difficult - just time consuming and you need to be a careful about being near peole who have any germs for a few weeks after I was told and I did keep to myself the first few weeks. I hope you can soon get a date for your infusions. Hang in there! I wish I could have taken it instead of sticking two click pens in my leg for a year which did not do anything and if truth be told I should have been taken off them much earlier but .... Anyhow, we are all different and some things work for some and not for others, so hoping Rituximab is the one for you and let me know how it goes! It is not known as a fast worker so a little patience needed which is hard I know. They can soon see if it has started working by your blood results and that gives you a great encouragement. Been there and am again at the mo. There are a few Rituximab vets on here who know lots lots more than I do. I am still a novice really. I have just had one duo of infusions and awaiting next in a week or so. Good luck Jo! NK x

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