Tocilizumab and rash: For the last nine weeks... - Vasculitis UK

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Tocilizumab and rash

BronteM profile image
9 Replies

For the last nine weeks I’ve been self injecting with tocilizumab.....and really pleased with the result. It’s taken time to settle in, but I’m a lot better than I was before I started. Ten days ago I had a molar out at the local hospital and they insisted that I must take clindomycin (antibiotic) for a week after that. Now this rash. Don’t know whether it’s from antibiotic or tocilizumab, so am not giving myself today’s injection. I rang my clinic, and they don’t seem too perturbed, just told me to miss this week’s jab and see my GP if the rash doesn’t settle in a couple of days. F

Has anyone else had anything similar? No GP appointment available with someone I know until October 21st!

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BronteM profile image
BronteM
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9 Replies
PMRpro profile image
PMRpro

Clindamyin has rashes/hives etc as a side effect. Seems strange it didn't appear until you stopped it though.

I'm fairly sure that TCZ can cause rashes too.

BronteM profile image
BronteM in reply toPMRpro

It may have started a bit earlier - it was only last night that I started itching in my hair, and this morning I noticed the rash. For the previous 2/3 days I’d been taking more notice of the awful effects the clindamycin was having on my guts!

Chrisellie profile image
Chrisellie

In the inflammation leaflet it says very common side effects include rash and itching. There are some very rare side effects.Stevenson-Johnson’s Syndrome. But yours doesn’t look that bad. It may just be a result of the antibiotics. I would go for an emergency appointment with any doctor though, just to be on the safe side.

Oh.. Is it a rough texture?

We are supposed to stop injection while on antibiotics.

BronteM profile image
BronteM in reply toChrisellie

You’re right I think, but I have just organised a way of getting a photo of the rash to one of the clinic nurses. I can also try to make an appointment with the nurse at our practice who has a much more practical approach that isn’t totally hooked to the appointment system! Will look up Stevenson Johnson syndrome too.

Chrisellie profile image
Chrisellie in reply toBronteM

Hi how did you get on?

BronteM profile image
BronteM in reply toChrisellie

Thank you for asking. Well I’m still itching and the rash now stretches from the top of my head to my knees, but it does look less angry. I’ve learnt quite a lot in the last few days! Firstly that cetirizine is not as innocent as my GP suggested, and you can take too much and set your guts off again, as well as ending up with mild palpitations. So now I’ve swapped to piriton and feel a lot better in myself, though I don’t think it’s as effective.

I’m hoping that the rash is caused by the antibiotics. A friend who was a Boots pharmacist for years tells me that they can stay in your system for up to 12 weeks after you’ve stopped taking them. Clindamycin has a half life of 5.5 days so if it was that there’s still quite lot left.

Clinic has told me to skip the next tocilizumab jab and I have an appointment with them on the 18th.

Chrisellie profile image
Chrisellie in reply toBronteM

Just goes to show. I also had to miss an injection, due to antibiotics.

My vasculitis rash isn’t quite as blotchy as yours and with no itching at all. hope you get to the bottom of it soon.

AndrewT profile image
AndrewT

Dear BronteM,

My 'Gut' feeling is 'Don't worry too much'. There are a Good Number, of reasons why you might be getting a rash and, if you are still Feeling Well, I would suggest a more benign explanation. Some Drugs can 'Interact' with each other and, since we ARE all different, you might get a Reaction, when someone else doesn't.

DO make that Appointment and GO AND 'SEE', your Doctor/ Consultant. Tell Him/ Her when the Rash started, how Long it lasted and ANY other relevant information.

I'm sure that you are 'Fine' but, if you are Not, THEN CONTACT THE HOSPITAL!

Best Wishes

AndrewT

BronteM profile image
BronteM

Thank you, Andrew. The rash is a lot worse and much itchier this morning so got an emergency appointment with GP. ..... he’s sympathetic, thinks it is probably the antibiotic that’s caused the problem, but can’t offer much except antihistamine and time! Cream - far too large an area, and baths etc won’t make much difference either. Really I’m nervous because my skin is now so thin that I daren't scratch it, but the itching is driving me mad.

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