Fed up!

Rituximab ineffective!

My rheumatologist confirmed my supision that Rituximab has not controlled my RA. I am rheumatoid factor positive & CCP positive & was diagnosed 13 years ago. In this time I have never been in remission. I am really struggling at minute despitate another steroid injection. My rheumatologist wants me to try IV tocilizumab but unfortunately my hospital (cumberland infirmary in carlisle) are unable to give me this treatment due to lack of infusion facilities!

I feel very angry & frustrated I am 44 years old & a single parent of 2 children. I have been signed off work for the last 5 weeks & I am worried about loosing my job. I just want the pain to stop & for my condition to be under control. I have new nodules appearing weekly & pain in particular in my feet, hands & wrists.

12 Replies

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  • So sorry you are struggling with this sero positive RA. It must be hard as a single parent of two kids and being in pain all the time is awful. Would you be able to get the infusions in a hospital further afield perhaps or is this not an option for you? I would have thought that if you need infusions and your rheumy has specified this then your health authority has to find a way of delivering them to you one way or another? But then I don't know much as I only have a sero negative RA which responds well to DMARDs if only I could tolerate them! You have my sympathy anyhow and I really hope things get sorted out for you soon.

  • Hi twitchy toes. I have been referred onto another hospital so it's a waiting game I guess. It's going to mean a day off work every month for treatment & nearly 2 hour drive for the treatment. So frustrating being ill all the time. This is my 2nd long stretch absence from work in six months. Worried about loosing my job.

  • Poor you - I can understand what a worry and strain this puts on you. I really hope the IV Tocilizumab works well and this makes it all worthwhile and means you can keep your job. Tx

  • Oh Rachel 43 I am so sorry you have been doing this for so long. I have only been doing it a few years and I am ready to scream so I have no idea how you have coped and being a single parent is hard enough without throwing that in too. I hope that you can get some positive news soon and they can do the infusions.

  • Tocilizamub is also available for weekly injection now - I've been on it for eight weeks now (sadly no improvement in my ra yet. .).

    Might be worth inquiring whether you can do this instead of infusion

  • Give it some time. It's hard to wait, I know. Perhaps your rheumy can prescribe a bridge to get you through until the tocilizumab is working to give you the full benefits. Sorry this is so hard for you.

  • I am on infusions of tocilizumab since June after failing Rituximab. My Esr and crp are now below average. I am going to try to change to weekly injections as losing a day off work every four weeks to journey to hospital is the only downside, as I have had no side effects other than my white cell being lowered, thankfully not to low. I still have pain in my hands, hips, knees etc but the doctor said its because of damage that has been done.

  • It's not a bad injection -needle is smaller than cimzia which was a nasty fat thing!

    It's also delivered by bupa rather than healthcare at home so that can only be an improvement.

    Hope it suits you:)

  • Thanks for info. I used to be on Hurmia injections and they hurt a lot, whereas mxt ones were fine. A nurse at the hospital thought that it maybe the preservative they had. Now have to find out how to get changed to injections as I would have thought that it would be better for the hospital with me not tying up an infusion chair every 4 weeks.

  • I've been informed it's not available in my area as an injection.

  • It's now available in injection.. here is some information on it.

    genentech-access.com/actemr...

    It's hard to wait for the drug to work so I am glad that your doctor gave you

    a steroid injection as a bridge to wait for the drug to work.

    If you have any co pays or costs for the drug, they have some assistance. It's

    worth it to check. You have to make a lot of money to not be eligible - most are.

    If you are taking a "statin" drug to lower your cholesterol, check with your

    doctor to make sure that the two are okay to take together.. sometimes this drug

    lowers the amount of "statin" that you need to be effective. Don't take my word

    for it, please ask your doctor. (I read about this one)

  • Thanks for the replies. Received an appointment for new hospital it's in April so a bit of a wait. Doctor has given me another sick note (work are not happy). It could be a while before I get my new drug so it looks like I struggle on. Been told I can have further steroid injections but getting worried now as I've had 9 injections in last 9 months.

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