Hi, Welcome!

The community is a safe space for people living with and connected to arthritis to ask questions and share experiences. Get started by registering here and posting your first comment or question!

Sign In with a Versus Arthritis account

However your life is impacted by arthritis we want to understand more about you so that we can make sure we continue to develop our information, support and services such as the online community.


If you've not already, please take 5 -10 minutes to fill in our survey. All information you provide will remain anonymous and be treated in the strictest confidence. TAKE OUR SURVEY

Tocilizumab IV to Subcutaneous injection

Hi I’m new to the VA and wondered if anyone could help, I’ve very anxious as I’ve been told I am to switch from IV Tocilizumab to Subcutaneous injections, I am absolutely panic stricken, partly because I Cannot stand Needles and am I am frightened of injecting myself. I don’t have anyone else to help me, as I’m newly separated from partner which has left me with reoccurring PTSD! I live with my son who has Dyspraxia. My Bloods have been really fluctuating this last year due to my dosage adjustment and were just boarder line last month. I’m due to go tomorrow for first injection but I’m not going! I’ve not been out my house for 5 weeks, I’ve not been able to get blood tests done because I just can’t go outside, let alone to clinic which is miles away. I’m really worried, but my Rheumatology Dept just won’t listen hence why I’m just not bothering to go! I’ve tried to communicate my fears and concerns but they just fob me off with your be alright! I’ve had IV Toc for 4 years and it’s worked well for me. Has anyone had to change over at this difficult time and what have you experienced side effect wise. Absolutely terrified! (I have Toc mono therapy partly because I’m hyper drug sensitive and allergic to loads of drugs) fear I’m going to get very sick...My Rheumatology Dept told me all IV Toc has been taken to Use on Covid Patience?

Answers

  • AnnjAnnj Posts: 60 mod

    Hi Pmr650,

    Welcome to the forum. I'm so sorry to hear that you are struggling and worried. Have you been told why you are going to switch to injections? Was the reason given the use for Covid-19 patients? It's not a good situation to be in if you feel your Rheumatology Department haven't been listening to you, especially if you are feeling very scared. Have you told them that this has left you feeling unable to attend your appointment? I can hear how difficult you are finding this, but it's not a good idea to just not turn up without telling them.

    The Versus Arthritis helpline is open from 9am. It's free to ring and available on 0800 5200 520, possibly talking to someone might help?

    with best wishes,

    Ann

  • Hi Ann

    Thank you for your reply.

    I have told them, several times they certainly know about my needle fear as each month I go for my IV I sit ridged in the chair looking the other way. Recently they have been less concerned to be honest I was forced to complain when a nurse made a mistake with my IV pump and mis programmed it for 30 mins instead of 1 hour! Huge headache that lasted 3 days after that. The nurses even tried to cover up their mistake! Don’t tell anyone it will be okay! I got an apology 1 month later...it was decided months ago that I wasn’t a good candidate for self injecting because of the one size fits all dosage and because it took a while to get my dosage right I was discounted from switch from IV to Injecting. Yet here I am! I asked for blood review last month again fobbed off with see how it goes neutrophil count was really low, as were many others..just ignored again..

    If I do call I will be told “Your be Fine” Don’t be silly we know best! My 1st infusion 4 years ago Was horrendous I reacted to start with to the Tocilizumab took 2 hours at the unit for 6 hours! horrible side effects for months then it settled.

    Feeling pretty terrified by everything! Don’t know what to do!

    • Yes the reason for no IV was because it was being used to treat Covid-19 patients!
  • Sharon_KSharon_K Posts: 161 admin

    Hi Pmr650

    I wondered how you were feeling today, and if decided to go in for your injection after all. Let us know how you are getting on. Also don't forget we have a free confidential Helpline service that you can phone for support and information on 0800 5200 520. They are open 9am-8pm Monday to Friday

    Sending Best Wishes

    Sharon

  • Hello Sharon,

    I Went today and had my first Subcutaneous Injection, it was stressful and heighten my Anxiety to off the scale levels. My bloods had shown some improvement thankfully and it was confirmed by consultant that NHS England have issued the directive to move all IV patients to SI, according to my consultant it’s not a choice, and will remain until whenever more IV drugs become available to use on RA patients and no time limit has been set....very reassuring. To be honest my Rheumatology have been trying to move as many patients as possible into injections for a very long time, to lessen the the number of patients in the day care unit....I spoke with my sister of the unit she was very kind and helpful regarding my needle phobia...I did give the injection to myself it wasn’t a pleasant experience I felt physically sick! and still feel anxious & very tired out

    This is from my Consultant

    I appreciate this is a very worrying time for you and all our patients. I am afraid we do not have any choice in the matter about switching patients from IV to subcutaneous Tocilizumab. This has come as a directive from NHS England to hospitals and is therefore not in the public domain. We have had no choice in this matter and were instructed to make the switch as soon as possible by NHS England. 

    The hospital has only sufficient IV Tocilizumab for a few patients as the rest has been sent to NHS England. We have already given this treatment to 3 patients in the Intensive Care Unit who had life-threatening Covid.

    If you do not get on with the subcutaneous Tocilizumab injections, then hopefully once the pandemic has passed, we should be able to switch you back to the IV Tocilizumab once we have sufficient supplies again.   The company has conducted trials of switching patient from IV to subcutaneous preparation and almost all patients have not had any problems with this.


    Thank you for your reply and support.

    Best wishes

    Paula

Sign In or Register to comment.