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Numptydumpty
Numptydumpty Member Posts: 6,415
edited 1. Feb 2012, 08:11 in Living with Arthritis archive
Hi everyone. I'm new to this forum. I was diagnosed with sero positive RA six years ago. I have tried sulphasalazine,leflunomide,humira and enbrel,with no relief. I am now taking 30mg methotrexate,400mg hydroxychloroquine,piroxicam,10mg prednisolone (which I'm trying to reduce but I'm having bad side effects to the increased dose of metho and I have to decrease that, so reducing pred at the moment is not an option). I also take zapain 30/500,(what a good name hey, if only it lived up to it!) and gabapentin. Then of course there are all the side effect tabs. Alendronic acid, folic acid, calfovit d3, omeprazole, ferrous sulphate, and hypromellose eye drops.And I still feel like she hit.Now rheumatologist is pushing me to try retuximab,which I have refused, much to his annoyance. I have a bad feeling about it . I can't explain why. Or maybe I just think enough is enough. Am I being stupid?

Comments

  • suzygirl
    suzygirl Member Posts: 2,005
    edited 30. Nov -1, 00:00
    Hi and welcome to the site. You have been through a lot, I tend to trust my gut instincts, so I don't blame you for not trying a med. However I don't know a lot about that med, so am not really qualified to advise.

    This site is great for support and a good giggle, I am sure others will along shortly.
  • Numptydumpty
    Numptydumpty Member Posts: 6,415
    edited 30. Nov -1, 00:00
    Thanks suzygirl. It's good to get things off your chest now and then. It will be great to talk to people who understand.
  • barbara12
    barbara12 Member Posts: 21,257
    edited 30. Nov -1, 00:00
    Hi Numptydumpty
    And a warm welcome from me, I do love your user name.. :D
    I am sorry to hear how much you have been through, and all the meds you are on, you really have come to the right place, and like you said its good to talk to people that understand some of what you are going through.
    I do hope to see you posting more very soon.
    Take care x
  • prefabkid47
    prefabkid47 Member Posts: 1,316
    edited 30. Nov -1, 00:00
    Hi Numptydumpty
    Welcome to the forum,sorry you had to find us as we always say.
    You will find us a supportive crowd and full of knowledge gained from personal experience.
    If anytime you want a bit of light relief you can always join us on the Chit Chat forum.Please keep posting we are always happy to listen.
    Ron
  • tillytop
    tillytop Member Posts: 3,460
    edited 30. Nov -1, 00:00
    Hello NumptyDumpty and welcome from me too. Love the name!

    Please don't think for a minute you are being stupid - I understand completely where you are coming from, having been in a similar situation myself not that long ago. I had, over the past 16 years, tried just about everything going and I was lucky in that I did get relief from some of them. Nevertheless, due to limited effectiveness of some and allergic reactions and unacceptable side effects from others, a year or so ago, I found myself pretty much where you are. I was fortunate in that my consultant understood my concerns and was happy with my decision to delay going forward with another biologic So, after 9 months or so struggling on meth and ever increasing doses of pred, I went for the Rituximab. And actually, despite my worries, it has been fine so far.

    I feel sad for you that your consultant is pushing you into a decision you are not comfortable with though because I feel that his role is to advise and to help you to make the decision which is right for you.

    The "enough is enough" feeling will, I am sure be familiar to many of us here and I have lost count of the number of times I have said "that's it no more appointments, no more drugs" and had a good old rant about it all. And I know from experience that, whilst ranting might make me feel better for a short time, it doesn't actually achieve anything cos I know, deep down that I don't really have a choice. One final thought and then I will stop rambling :roll: Is it just Ritximab you have a bad feeling about? If so, could you maybe ask your consultant about Infliximab maybe or one of the newer biologics whose names escape me?

    Thinking of you.

    Tillyxxx
  • frogmorton
    frogmorton Member Posts: 27,474
    edited 30. Nov -1, 00:00
    Hi Numptydumpty

    just wanted to offer my support and sympathy for the position you find yourself in.

    l know if l were you l would keep buying myself time while l think about it all.

    Maybe you can start a rituximab thread on here and see how people are doing on it at the mo??

    Love and luck

    Toni xxx
  • julie47
    julie47 Member Posts: 6,041
    edited 30. Nov -1, 00:00
    Hi Numptydumpty

    welcome to the forum from me too.
    I am so sorry that you have had such bad 6 years with the arthritis and that nothing seems to be working :( I hope that very soon you and your rheumatologist come to some conclusion on what to do next and I have my fingers crossed that what ever you decide , it works.

    Love Juliepf x
  • Numptydumpty
    Numptydumpty Member Posts: 6,415
    edited 30. Nov -1, 00:00
    Thank you Barbara, Ron, Toni and Julie for the warm welcome. Thank you also Tilly, I'm glad to hear that you are having some success with Retuximab. It is mainly Retuximab I have bad feelings about, but I'm not keen to take any biologics to be honest. My Rheumatologist says I can't try any others until I've tried Retuximab. I don't do well on anti TNF. Anyway I'm glad I've found this forum, and look forward to posting in the future. Numpty
  • DebraKelly
    DebraKelly Member Posts: 398
    edited 30. Nov -1, 00:00
    Welcome, love your user name btw!

    Firstly this is a great forum to share your views and concerns.
    Everyone on here is very helpful and understanding.

    I would have a chat with your doctor regarding your medication. If he/she doesn't listen then seek a 2nd opinion from someone else.

    I have been on Meth for a while now and found it very effective.

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