Ciclosporin treatments and wrist injections

lily
lily Member Posts: 160
edited 5. Mar 2013, 17:20 in Living with Arthritis archive
Goodevening

I received a letter from the hospital and basically they are now looking at giving me Ciclosporin and wrist injection,

Ive been on sulfasalazine,leflunomide,methotrexate and humira and none have had the desired effect :(

Im prepared for the ciclosporin but dont want the injections as they do not work at all for me, over the last year ive had the injections in my right hip, all through one hip and into the other,the wrist and just in january the left shoulder.

I just want a treatment that will make me feel at least human, so sick of not being able to do the simple things for myself.

Sorry this is sounding like a poor me thread, just want help

Many thanks for looking

Lily

Comments

  • valval
    valval Member Posts: 14,911
    edited 30. Nov -1, 00:00
    hi lilly i know how you feel it awfull but unlike you i found injecrions great i rested for 24 hours after and they lasted over a year such a relief i have been on some strong drugs for nhl and one of the side affects of the treatment is my arthritis is in remision and to be honest it might only last 6 weeks but boy does it feel great a desperate way to get relief but heaven so good luck on ciclospori hope it works good luck and (((hugs))) to keep you going val
    val
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Just because they want to try something doesn't mean that you have to go along with it. As a patient you have the final say about what treatments you will or will not take. I never had much benefit from steroid injections and the same applied to the cyclosporin but you never know, it may be the one for you. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • stickywicket
    stickywicket Member Posts: 27,764
    edited 30. Nov -1, 00:00
    It does wear you down when treatments don’t work. It seems odd that they have persisted, and still are persisting, with the injections if they don’t help you at all. Have you been advised to rest the injected joint for 48 hours afterwards, Lily? I’d guess that you can always refuse the injection if you don’t want it.

    Have you tried the meds you listed separately or in combination? I know ciclosporin can be used to treat RA but I don’t think I know anyone on it. I hope it works for you.

    As for not being able ‘to do the simple things’ I guess quite a few of us are in that situation. Have you read the ‘Simple Ideas…’ thread near the top of the page? It gives tips on how to tackle things differently.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • lily
    lily Member Posts: 160
    edited 30. Nov -1, 00:00
    Thanks for the replies.

    Ive rested 48 hours after every injection in fact the one i got from hip to hip( and all in between) i rested for a week,

    Im on my own with my 2 youngest and it can be difficult feeling like a lab rat.

    I am now of the mind to refuse the injections as they are a waste of time, the treatment i will try, hoping this is the right one for me.

    Ive never been offered the meds in combination just separately so may ask if it would be possible for me to do this

    Once again thank you for your thoughts

    Lily
  • stickywicket
    stickywicket Member Posts: 27,764
    edited 30. Nov -1, 00:00
    lily wrote:
    Ive never been offered the meds in combination just separately so may ask if it would be possible for me to do this

    It seems quite common practice, Lily. I've only ever had methotrexate with hydroxychloroquine but others take various combinations of DMARDS. I guess you can always ask for nothing.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright