Getting course of truxima

[Csavo]

Hi I live in northern Ireland and was due my second course of truxima on Thursday but have received a letter not to attend and wait on a phone call from the team I am worried about not getting my medication as I am already in a lot of pain. Has this happened to anyone else and what was the outcome please

[Hidden]

Sorry to hear you are not getting your treatment, the hospital maybe think its a risk bringing you into the unit. Perhaps you can get some oral steroids in the meantime? Take care Kiki

[Lolabridge]

Hello. I think you need to be pushy now and let them know you are flaring and in pain. If you have a patient helpline number call that and if not ring your Rheumy nurse.

I had a call last week to tell me my F2F Truxima review is now going to be a telephone call! How can my joints be assessed in a phone call. So I made a fuss and said already flaring and will expect my next infusion end April anyway, which is exactly 6 months since the last. Did your latest blood results show inflammation? If so even more reason to push for your infusion.

Good luck.

[Csavo in reply to Lolabridge]

Am meant to get bloods done tomorrow in doctors surgery so they are back for Thursday so hopefully they will see something from them I've had a lot of problems with starting truxima such as kidney infections low on folic acid and also b12 and am on more medication so just dont know what to expect. Thank you for your reply

[StormySeas in reply to Lolabridge]

Hi Lolabridge

Just checking that you’ve had the specific blood test that shows your B cells are repopulating before you go ahead with a top-up infusion?

[StormySeas in reply to Lolabridge]

Sorry pressed send too early! Do you have your repeat infusions at pre-set intervals? Am asking as I read a post here from someone on RTX who was stressing the importance of having specific tests before infusions are repeated. Worth a read, I’ll try to find it....

[Csavo in reply to StormySeas]

Haven't had much information about what is happening hopefully I will find this all out when they ring me on Thursday will keep you updated

[Lolabridge in reply to StormySeas]

I’ve been sent a Blood test form by my Rheumatology dept so they will have some results before my Truxima review by phone so will get that one done first. They may send me another nearer my infusion date which I think may include the test you mention (immunoglobulins?).

No my bloods are not done on a regular schedule perhaps because I’m not on MTX and only on Truxima (plus 7g Prednisolone daily ☹️).

[weathervane]

Hi Csavo , im from the north as well. I had a 4-5 month delay in rituximab which I finally received in January, this was due to a back log . I called the gp and had a steroid injection which helped a bit as i was very sore , it did keep me going until the rituximab.

I had reason to call the rheumy nurse as hip bursitis was alot worse , it took a week for her to call back due to pressure they are under , so when I spoke to her on Monday she said no injection at the moment unless there is heat in the joint or i have a temperature , it was what I expected.

I would recommend calling the rheumy nurse for advice, she might be able to give idea about the length of delay.

I hope you get good news and a date thats not too far away best wishes and keep well, hope you are isolating at the moment 🌸

[GranAmie]

hi there, i'm on truxima too and hoping for my 4th set of infusions this june,. after initial worries have found it so good that annual infusions rather than 6 monthly are, so far, enough 4me. no longer have a rheumy / nurse helpline tho'. we've been told to ring the BT9 /MPH ward or secretary if there are queries but it may depend on which centre does your infusions.. hope this helps

[GranAmie]

How are you doing now Csavo? I'm in the same area and due this month for annual Truxima 'reboot' but have now been told am on waiting list, given no indication how long!. Hope they have sorted you out? Take care x