Hi, I’m so pleased to have found this community.
I was diagnosed with GCA in October 2024 after a rough few weeks.
I was started on Prednisolone 60mg in September and am now down to 4mg and also self injecting Tocilizumab since December 2024.
However I’ve been having an allergic reaction at the injection site for the last 3 weeks getting worse each week despite taking antihistamines as recommended by Vascular CNS and just wondered if anyone else has experienced this.
Hi I've been on it for over a year now. And the last two injections I got a reaction. The reaction was very sore and 4 weeks later still have marks on both injection sites. I was injecting at my stomach area and this week switched to my buttock and so far no reaction tg. If I was to react it would happen immediately after injection. So all good this week, fingers crossed it stays that way as the reaction can be quite sore/itchy. Hope this helps.
Thank you Headpain24, I thought it was strange that I’ve been injecting since 1st Dec and only got a reaction 4 weeks ago but maybe not so unusual. I still have marks at 3 injection sites and it’s got worse with each one, I’ve injected this morning so fingers crossed.
Also over the last few weeks I’ve been getting mouth ulcers which are putting me off eating hence more weight loss.
Have you told your rheumy unit? Mouth ulcers have been reported as being caused by TCZ - colchicine enabled further use of TCZ, But they are also mentioned as a common side effect.
Hi and welcome!
I've been on TCZ for 3 years and so far haven't had a problem though I know injection site reactions are not uncommon.
What do you use to clean the injection site? Has that changed at any point? Do you let the surface dry before injecting? I used to react to the alcohol wipes they use to clean skin before injections so that is a possibility.
I haven’t changed my wipes but might try that, although at first it was 2-3 days before the reaction came up. Last week it was straight away. Thanks again
When the nurse came to teach me how to inject myself she told me the use of antiseptic wipes had been discontinued. It used to be a thing whereby you wiped the area prior to injecting but now stopped. I'm in Ireland is this the same everywhere?
That's interesting - because when I replied I was thinking about that. I used to be a phlebotomist and a study was done way back then that showed there was no increase in problems when no alcohol was used prior to taking blood. We had a patient on one ward whose veins were awful and the doctors were messing them up trying to get blood out because they all had this awful rash. Our boss approved us not using alcohol and for a whole week we nurtured a very precious vein. We left instructions not to use alcohol - and returned on Monday morning to find we'd been ignored ... All gone vein.
Hand washing and washing and drying the skin is enough they said. I must ask.
And some further reading - apparently the Green Book, that source of all wisdom, says you don't need alcohol on clean skin, soap and water is adequate.
hospitalnews.com/the-alcoho....
I’ve been on it since 6/24 and have had injection reactions on and off since 12/24. I vary the site and use alcohol but have started to leave it out of the refrigerator for an hour or more and no more injection site reaction!
Were you not told to take it out 45 mins before anyway?
Yes but I extended the time after I started having injection site reactions and I haven’t had any since.
Thanks, yes I leave it out for an hour while I’m out with the dog. Someone else suggested maybe try 2hrs. I injected yesterday and the allergic reaction started overnight.
sorry you are having these allergic reactions. Aussie here, we ve been told clean dry skin is all that is required and that alcohol wipes no longer deemed necessary. The instructions on the Needles say leave pen out of fridge for 45 mins to warm up.
Thank you, everyone has been so helpful, I’m so pleased to have found you all.
Tocilizumab 
Allergic response to Nitrofuantoin
Reducing tocilizumab injections
Allergic to prednisalone.
