Hi just hoping for some feedback on Tocilizumab ( wish they came up with easier names 😀) RA active again after few years on Humira and they have asked me to consider this . Apart from Humira everything else causes me sickness so feedback on Side effects experienced most welcome.
Thank you
I've been on tocilizumab for nearly 2 years now with minimal side effects. The only side effect I have is the obvious low immune system and easier bruising. I had failed on both Enbrel (after 2.5 years) and Humira (after 4.5 years) before starting the tocilizumab. It worked very quickly for me (24 hours!) and my CRP went from 179 to 0.3. Obviously it would work differently for everyone but I've been very pleased with it. Hope this helps
Thank you Ruth x
Hi Pennyjones1
I started Tocilizumab 6 weeks ago. I'm afraid that it has not worked for me so far. I'm having worrying side effects and had to miss one injection because i got a sinus infection after my third dose for which i needed antibiotics. I have been in flare since my second injection and had to have a steroid injection to alleviate the symptoms. Now that has worn off and i'm back in flare. I've been in touch with the rheumy nurse again to discuss things and as i have only had 4 injections so far and it can take up to 12 weeks to work, I am going to persevere for a bit longer. Naproxen is helping to ease things a bit.
As for the side effects, for me they are dizzines and nausea after the injection for a while. I have developed muscle aches in my upper arms and shoulders and calves. I feel lightheaded a lot and a bit disorientated. My knees have swollen which is a first for me as I have never suffered with my knees before. The knee thing might not be a side effect but disease progression.
Hope it works for you as it did for ruth. Best wishes and as your post was 16 days ago perhaps you could let us know how you are doing.
Hi Thank you, I still have not fully decided. I am seeing a hand specialist end of March so have decided to wait till then.
Hi Penyjones1,
I have been on Tocilzumab since the Autumn of 2015. The blood results have been fantastic, and the disease control is great, when I am well enough to go ahead with the treatment. but I have problems with side effects and infections.
I am in my 60's and had Rheumatoid Arthritis for a full two years prior to diagnosis and beginning appropriate treatment in 2006. Before the end of 2009 I had had both hips and both knees replaced and the surgeons wanted to proceed immediately with replacing both shoulders and both elbows. I attribute the severity of the damage to my GP's delay in diagnosis.
I cannot tolerate the regular dose for my weight so I have infusions at half the normal dose for my weight rather than injections.
Since being on Tocilzumab I have experienced dramatic hair thinning.
It is no fun living with RA
AARA
I have been on it for 7 months. Helped with the systemic side ie no more pericarditis and inflammation in the lungs. No side effects... hips and hands still painful. Platelets lower than normal but rheumy not sure if it's related to the drug
Tocilizumab & Travel 
Tocilizumab infusions
Tocilizumab injections
Tocilizumab injections
Changing to tocilizumab
