Tocilizamab infusions/injections advice please ...

[Rosie_rabbit]

Evening everyone, I posted 2 months ago following my first infusion of Toci at the end of May. I had really bad side effects for about 3 weeks, so much so that my rheumy said I shouldn't have it again. Within days of my appointment with him, which was 3 weeks after the infusion, the side effects wore off and I gradually felt better and better. The best in fact I felt in a long time. Then about 10 days ago I hit the floor like a rock which is where I've been ever since.

Three weeks post infusion my crp was about zero, now it's gone back up higher than before the infusion.

So, I'm wondering if I could have felt the benefits of the Toci for so long after infusion, if indeed it was the Toci, but nothing else has changed to have made me feel better. So from weeks 4-7 post infusion I was feeling great, well relatively!!

When I saw my consultant he didn't suggest a plan as he wanted to review me, more bloods, scans etc. He said he had never come across anyone who had reacted badly to Toci (and this is a big London hospital). I've an appointment tomorrow, hopefully to discuss a plan.

Now although I felt utterly awful for 3 weeks post infusion and I don't want to repeat this, I wonder if I might do better on Toci injections. My hospital is in the process of switching to injections and at least if I react badly it shouldn't last so long, but the benefits were really good and I've seriously been considering asking for this tomorrow and wondered if anyone had any experiences to share please?

I've previously tried 2 other biologics, Cimzia and Abatacept which didn't help enough. I always injections at night but on one occasion I forgot and injected the following morning. All that day I felt awful, similar to the post infusion side effects but it only lasted about 12 hours. So perhaps I just slept off my side effects, who knows. Of course the rheumy may not let me try the Toci again, but though if I've any experiences from you guys to share, bearing in mind he's not treated anyone who has had any side effects, then perhaps I could persuade him because I really hope it might work.

Lastly, I go on holiday in 2 weeks, camping of all things !!! So whatever we decide it's not going to happen before then as I won't risk any side effects of starting anything new before then. But, as I said I'm on the floor now, can't see me packing let alone pitching a tent. I'm taking 10 preds, meloxicam and 20 metoject ...any suggestions on a short term fix??

I know it's the rheumy job to come up with the answers, but I sometimes feel that a little suggestions never hurts. Oh and I'm really not asking for medical advice as I know we don't do that on here, just some ideas to discuss with the team tomorrow, sorry I've left it a bit late haven't I!! Thanks in advance everyone

Rx

[bassiefromholland]

Hi Rosie, that your CRP was almost zero is well known by toci , my Rheumy Saïd toci settles on you IL6 (protein) and the CRP is unrelyable. ask your Rheumy for that. It is a risk when you have infections because they can't see it in your bloed. I have had 4 infusions of toci, and though my CRP was three it doesn't have any effect. So I will start Humira in August after an ablation for arrhythmias of my heart.

Wish you all te best again and hope it will come together!

XxxxBas

[Rosie_rabbit in reply to bassiefromholland]

Hi Bas thanks for your rely and I'm sorry that the Toci didn't work for you but hope you have better luck with Humira.

I saw the specialist nurse today and she said she needed to speak to the consultant who wasn't there but I'm seeing him mid September so gonna have to wait n see what plan he has then. The wait is annoying but I don't want to change any meds before going away.

As for managing in the meantime, the only way is a short term increase in the preds which I'm not happy about but soooo want to enjoy my holiday so will increase just for this period. She said any increase would have to be short term so I'll try and get levels right before I go away.

Rx

[LS1957]

Hi I started Toci infusions in April two weeks after a steroid injection - first two infusions worked wonderfully but it's been downhill since - it's been one thing after another and I have had to ring my Rheumatiod nurse cos the pains in my feet are horrendous - up at 4am today with the pain - I also have a dreadful cold I can't shift - my consultant wants me to continue with the treatment to see if it settles x gut feeling my initial good luck was the injection with the treatment x I have also just spent the weekend camping with our grandkids good fun but not easy but I won't give into RA. Looking to speak to a nutritionist to see if they can help as even though I am at slimming world I have put well over a stone on with this treatment x good luck x