The rash got worse when I had my cimzia

theresa4

Well since my last visit I have been prescribed with antihistamine apparently the strongest dose but that didn't help when I injected my cimzia on mon eve. The rash is now on my arms quite bad and a sprinkling on my legs and face the gp felt it more than coincidence this time) I emailed my rheumy nurse who claims it's unusual but I have to stay off it and go next Tuesday. My problem is that on the cimzia website it says one of the possible noted reactions to cimzia are rash itchy down arms ???? It also says you have to come off it. My issue is this nurse specialist is seemingly unaware of noted possible side effects and these are the people who I am relying on for my treatment and care. Hope u can come with me On Tuesday 2.15 as I think I may need support if I have to come off this biologic cos that will be 4 fails and I'm worried they won't want to risk more money on me ;(
Theresa x

tillytop

So sorry that the rash has got worse Theresa.

I know and understand that you are worried about what will happen if you have to stop Cimzia permanently, but please, please, make sure you push really hard to get someone to acknowledge that the rash is a known side effect so that they can check it out properly. I spent getting on for two years getting sicker and sicker while trying to get someone in the medical profession to acknowledge that I was having an allergic reaction to Humira, (despite my many and varied symptoms being listed as "common" or "very common" on the information leaflet) and I wouldn't want anyone else to go through this.

Will be with you on Tuesday Theresa - please do let us know how you get on.

Love Tilly xxx

julie47

Hi theresa
I am sorry that the rash seems to be getting worse.
It is worrying when you think the specialists are not up to scratch.
I will be there for pocket duty on tuesday.
Perhaps you could write a list of questions.
Take care
Juliepf x

salamander

Hi Theresa, I've been put on an anti histimine for my rash too and but it doesn't seem to be getting any worse. Like you, would be very upset if had to stop Cimzia so best of luck on Tuesday.

dreamdaisy

I often wonder why we expect so much of medical professionals - I think it's because we are individuals, who know our own situation inside out so we think they should be equally adept at remembering everything about us. They cannot. Just think about the range of drugs and side effects that rheumatology nurses are supposed to 'know' about, factor in that the manufacturers warn you about every side effect in the book (whether relevant or not), also factor in that we all react so differently to these things, and then factor in that as patients we are one of hundreds, if not thousands, in that rhematology department, it's no wonder that sometimes they appear to 'lose the thread'. Poor things.

Having said all of that, I think that it is generally accepted that rashes are a standard side effect of many of these medications, so they should be a little more alert to them. If the anti-histamine isn't being effective then yes, it would appear that something more deep-rooted is a factor here. I sincerely hope that they don't take you off it, because it has had some benefit? Am I right in thinking that? (Sorry, I do try to keep up with a few people on here but not being on top form myself at the moment I am dropping the ball here and there!) Although the anti TNFs are lauded left, right and centre they are not the wonder drugs of the age for everyone, as you and I both know. Let us how you get on, we will be there in spirit on Tuesday. DD

frogmorton

Hi

i am so sorry about that rash....I do hope all is well and 100% will be there for you on tuesday.

Hang on in there. You must be very worried :sad:

Love

toni xx

theresa4

Thank you all for your kind words. And DD your right I am being a bit harsh on the rheumy nurse I suppose I'm just lashing out. It was working a bit before Christmas but since restarting it hasn't really helped at all and that's when the rash started. I think my immune system has decided that cimzia is no good and that's why I'm getting this awful rash. Just feel so low I'm in so much pain and chances are I'm going to have to come off the drug.

tillytop

Hello again Theresa.

I don't think you are being at all unfair on the rheumatology nurse. In my opinion it is a vital part of their job to be aware of the potential side effects to make sure that the drugs are not doing more harm than good and that's what the side-effects leaflets are for. One suggestion - do you have a camera that you could use to take a pic of the rash? Only reason I ask is that, if it has faded at all by the time you go to the hospital, they will still be able to see what it was like. I did that a couple of times for Humira related symptoms and it was helpful.

So sorry you are feeling so down and are in so much pain.

Thinking of you.

Tilly xxx

salamander

I agree with Tilly. When I got a rash on Hydroxy I made a phone call to the rheumy nurse and half an hour later got a call back saying stop the drug and come in the next day to see one of the rheumatology team.