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New Member

Bill2710Bill2710 Posts: 2
edited 22. Nov 2018, 04:38 in Say Hello Archive
Hi,
New member from the U.K.

I have had RA now for 7 years and I am now on a course of Rituximab. I started with Methotrexate followed by sulfasalazine and then leflunomide. I also have markers in my blood for Lupus so was put on Rituximab fairly quickly.

I have now had 5 courses of Rituximab which is a magic drug and has allowed me to be mainly pain free and with flexible joints. For some reason this last one has not worked. My RA is now back to the level it was 7 years ago.

I am now waiting to start a new drug called Baricitinib that is taken daily in tablet form. I am waiting for the results of a blood culture before starting the drugs. I have had injections into my right wrist in the meantime and now need the same in my left wrist, thumb and forefinger.

Has anyone on this forum who has been taking Rituximab found it to stop working.

My Rheumatologist has retired and in typical NHS fashion has not yet been replaced. Result total confusion. I do not now know if I will get my new treatment or even the injections I need.

Comments

  • moderatormoderator Posts: 4,082 mod
    edited 30. Nov -1, 00:00
    Hi Bill2710 and welcome to the forums.

    The efficacy of drugs can certainly "wear off" and in effect stop working effectively for pain relief. I'm sure our members will relate personal experience and what they did, giving you more detailed information.

    I came across this news item on the Arthritis Research website about Baricitinib. I hope you find it useful.

    https://www.arthritisresearchuk.org/news/general-news/2016/april/new-rheumatoid-arthritis-drug-can-succeed-where-others-fail.aspx

    Hope your arrangements with your local NHS get sorted out quickly. Do come and tell us how you get on.

    Best wishes
    Brynmor
  • stickywicketstickywicket Posts: 25,993 ✭✭✭
    edited 30. Nov -1, 00:00
    Hi Bill and welcome from me too :D

    As Mod Brynmor says, meds can suddenly stop working for no obvious reason. I've never done the biologics but it's happened to me with DMARDS. I don't think in terms of pain-free because that's never been an option but, if the meds are working - or not - it will show in our blood tests.

    It must be quite worrying knowing that your rheumatologist has retired and there is, as yet, no replacement. I think, usually, when we come off one treatment, we have to give the drug time to get óut of our system before embarking on another but,even so, you'll want the new one asap. I wonder if it will be more likely to go ahead just because it's in tablet form rather than an injection or infusion. I hope so. I also hope you'll soon have a new consultant.
    “There is always a well-known solution to every human problem - neat, plausible, and wrong.” H.L. Mencken
  • dreamdaisydreamdaisy Posts: 31,567 ✭✭✭
    edited 30. Nov -1, 00:00
    I've tried a few biologics and they all share similar characteristics in that they did nothing to ease pain or improve joint mobility, possibly because it was all too little too late. I am currently taking humira and meth by injection and know they are working because my bloods are lovely. I feel better in myself when I have to stop them for an infection which is always pleasant but, like all things pleasant to do with arthritis, that's short-lived.

    Those addicted to alcohol or drugs need more and more to get the same 'effect' because their tolerance grows, as does ours to the medications. This must be a horrible setback for you, you've known better (if not good) times and now that appears to be ending.

    I am eight years in with my current mix and am under no illusion that things are not as good as they were (my definition of good is very elastic and many wouldn't associate the word with how I feel :wink: ) but my situation is complicated by osteoarthritis which was diagnosed in 2011. I began psoriatic arthritis back in 1997 and medication in 2002. An accurate diagnosis in 2006 changed nothing know the meds front, neither did it make me feel any different about it. It is what it is, it will do what it will do and it won't go away are all facts. This must be a proper setback for you having known the better times when experienced how a drug should work and I hope the new regimen brings at least equal success. I have run out of options, my trust will not find another anti-TNF but, hopefully with the arrival of the bio-similars, I might stand a chance of trying something different when the inevitable happens. Good luck and please let us know how you get on. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • ElizaEliza Posts: 1
    edited 30. Nov -1, 00:00
    Hi
    I want to introduce myself but don’t seem to be able to find the right place to do this. Keep clicking on Say Hello and getting nowhere. Advice?
  • moderatormoderator Posts: 4,082 mod
    edited 30. Nov -1, 00:00
    Hi Eliza and welcome to the Versus Arthritis forums.

    Here's a quick step-by-step guide to posting:


    To start a new thread, visit the forum where you wish to post: in this case, here in Say Hello.

    Then, click the button labelled Post New Topic. You will be taken to a form headed Post A New Topic :D

    Next, fill out the Subject box and then click in the larger Message Body to write your introduction.

    When ready, scroll down the page a bit and click the Submit button to post your message to the board.


    Do tell us a bit about yourself and your experience with Arthritis. Feel free to post questions or ask for help: we will all do our best to answer them.

    Best wishes
    Brynmor
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