Developing allergic reaction to Tocilizumab…

[Brushwork]

Why does my body feel the need to be so overly defensive?

It all started really well with Tocilizumab, no injection site issues just quickly effective RA control. The magic substance was found…

Over the past 3 months or so - it started with a bit of redness at injection site and a tickly cough that lasted just a few hours post injection - then the site redness lasted longer and become lumpy and the cough lasted long - the site redness became itchy for a day the cough more irritating, waking me at night but at first this only lasted a day or so. Now; the injection site is red, raised and itchy for 4 days and the tickly cough longer.

At the same time the RA gremlins are breaking free causing more pain and stiffness, but no swelling yet! Fatigue is returning to my life also...

Oh, how I enjoyed the freedom of such wellbeing, and still am, just not quite as good... Well, it’s still giving 80% health and well being… but I was at 95% in the first 4 months.

Should I try antihistamines? I may call the biological nurse on Monday?

Go gently

[Lolabridge]

Do call the nurse and say you’re having a reaction and that your RA gremlins are returning. Hope it’s a short term problem and will pass.

[sylvi]

I would ring your rheumy team looking after you darling to be on the safe side.xxx

[Moomin8]

If it was me, I'd have been on the phone already tbh. I used to take an antihistamine when I had Cimzia because I had a bit of a funny throat afterwards, which calmed down as time went on. When I started Idacio, I had the same thing. However, I haven't had a site reaction. You must definitely call this one in ASAP. Great to hear that you've had some relief though.

[Marionfromhappydays]

Oh flippin eck.

Yeah as the lovely folk above say I'd contact rheumatology and they might be able to help, hope they can. X

[Maggsie]

Hi there, I have a similar tale re Tocilizumab. Not injection site and cough but mouth ulcers and cold sores. It worked so well for 4-5 months but post covid jab started to get these reactions. The rheumy asked if I wanted to change but I suggested cutting back to injecting every two weeks. This does seem to have settled things down and I'm now trying every 10-11 days. I really dont want to give up on Tocilizumab unless its absolutely necessary as it's the best thing I've tried in the last 4 years. I remember when I went to the hospital for my first injection they gave me an antihistamine so if I were you I would try an antihistamine on injection day (subject to rheumy approval of course) Good Luck

[Neonkittie17]

Oh gosh .. I am sorry to hear this. Similar happened to me with Enbrel in 2013. Worked like a miracle in two hours then after five weeks huge rash and reaction on the site and it stopped working. Call the Nurse now, Brush. x

[Vonnie10]

How unlucky I’m on tocz and doing ok ...maybe there are some options like what others have said.. goodluck x

[creakybones]

I would phone your Biologic Nurse and take advice. I had to stop taking my Tocilluzumab as it gave me such bad chest infections, I am turning it around now after about 4 months now without it my chest has settled. It is always great when you get relief from a newish drug but sometimes the long terms side effects not so good. Good Luck

[Brushwork in reply to creakybones]

Oh gosh. I am waiting to hear back from Rheumy, biologics nurse advised taking antihistamine in meantime. My cough is ticklish but with a bit of tightness in the upper respiratory area, I’m a bit concerned about it, but afraid to come off the drug that has given me so much relief.

Thank you for replying Creakybones, and I hope to find a better magic drug soon.