Tocilizumab

[tazman3]

I am due to start Tocilizumab Infusions in two weeks. Does anyone know the difference between infusions and injections? Does either cause less side effects or work better?

I have tried all kinds of drugs for RA and none have worked and most made me feel worse. I have no problems with injections at home, I just wonder if infusions are the best way to go. Also, after the first infusion, am I likely to feel strange? I have to use buses and don't want to make a fool of myself if I have a funny turn!

[springcross]

Hi tazman. An infusion is like an IV drip which is placed into a vein and medication is fed into the vein through the needle with a tube attached to it, usually over a timed release. An injection is a straightforward needle (as in an innoculation) which is injected into your arm or leg. I had intravenous infusions for eight years and didn't have any side effects from the procedure, although the drugs I was having at the time were not for RA. The method of the infusion or injection does not affect any possible side effects that may occur from the medication to my knowledge.

[Pat9442]

Hi. I have infusions of Tocx every four weeks. I travel to and from the hospital by car and bus and have never had a problem or any side effects. I began on weekly injections, done by me at home and they were fine too. But I found the syringe difficult to control so changed to infusions.Good luck whichever is chosen

[tazman3 in reply to Pat9442]

Thanks Pat, your reply was just what I needed. I've never had problems with jabs at home with other meds I've taken. But, I don't like having sharps bins in the house and having to make room in my tiny fridge! I quite like the idea of sitting with my kindle for an hour while my meds are dripped into me. Hopefully, this one will work.

[allanah in reply to tazman3]

Same as Pat!

[eastbournelady]

You have the infusion slowly into your arm via needle. You have it at hospital so you can be monitored for any adverse reactions especially on first one . I had Tocilizumab for a while but I got rash & swollen legs so had to come off but other people found it really good with no side effects. I also went by bus for it so no probs there. If you have any bad reactions they wouldnt let you go until recovered.

[sueathome]

Hi tazman3,

I was started on tocilizumab infusions about 7 years ago, every 4 weeks. After a couple of years I was switched onto weekly home injections, but after about 2 or 3 months, I found that they weren't as effective. I was told that they don't suit everyone, was switched back to infusions and have been on them ever since. I always travelled to the hospital by train & underground, and have felt fine on the journey home. Since the start of the first lockdown, my hubby has driven me to the hospital as the immunosuppression from the toci means that public transport wasn't safe. What I was advised is to rest for the rest of the day, and drink plenty of water for the next 24 hours to avoid to avoid headaches, which works for me.

Good luck and hope it works for you.

[tazman3 in reply to sueathome]

Thanks Sue, your reply is very thorough and covers all my concerns. I appreciate you taking the time to pass on your experiences. I have stored them in my brain files for future use!!

[Hairbraid]

Hi taxman just wondering how you doing I’mLooking at starting tocilizumab infusion next month have tried many meds infusion not worked or side effects how are you doing on it my consultant advised infusion as get in system quicker on a depo injection at moment so weary of trying new meds side effects etc

[tazman3 in reply to Hairbraid]

You might wish you'd not asked me Hairbraid! Tcx infusions for me have been a failure. I've had 3 in the past 9 months which really doesn't seem acceptable as they are supposed to be every 4 weeks. After each infusion, the bloods prior to the next one show very low neutrophils (white count) and I have to stop until they go back to normal. I have to be at the hospital day case unit for 9 am and don't leave until at least 2.30 pm.

I have now added high cholesterol/blood sugar side effects caused by the TCX and have just had to start taking statins. I didn't want them as I know they can cause muscle pain. I really don't need any extra pain! But, a doctor barked at me "do you want to have a stroke?" No choice then. I had a cortisone shot last week which usually helps a lot with the pain. Unusually, I'm still waiting for it to kick in and my pain is worse (statins I suspect). I've changed from Ibuprofen to Naproxen which is doing nothing for me, I have no relief and can't take anything in between the morning and evening Naproxen doses. Oh yes, I've also gained half a stone from 3 infusions of Tocilizumab.

So there you have it. It's only my experience and I know people, including my neighbour, who are sailing through pain free treatment on Hydroxy and Methotrexate. So whatever you decide I wish you luck.

I've already had a blood test following last week's infusion and the rheumy nurse rang me with my new instructions for Sarilimub to start asap.

[Hairbraid in reply to tazman3]

Thank you also looking at orencia infusion have had intolerable to humira so I’ll baricitinib as well can’t take anti inflammatory like naproxen make me illl stomach problems I feel for you still waiting for my depo injection to kick in tooo oh it’s no fun this disease 4 years nothing worked yet ❤️❤️❤️❤️

[tazman3 in reply to Hairbraid]

I was diagnosed May 2019 and the consultant suspected that I had been living with this disease for years before that. I was so relieved because I have felt ill for years. Nobody listened and I put it down to menopause. That consultant was excellent and knew his stuff. He is now being appreciated in Australia and I bet he is being paid much more too.

When I started TCX, I pushed for infusion rather than depo jabs. Someone on here advised it would be better. I've now been told that 2 depo jabs per month is better for me as the side effects will be gentler if split in two. Hopefully, I can get going with it and might feel better by Christmas. The times I've said that for various reasons!!

[Hairbraid]

Oh bless you I was diagnosed in sep 2019 but same had health problems for years my go is amazing I just feel depleted side effects from so many biologicals and not working hoping next time lucky we certainly face many battles lovley to chat to someone else are you on Instagram I am found a lot of spoonies helpful I’m jane bradley big hugs