Severe reaction to Cimzia . Next step immunology.

[Balletmum71]

Hello everyone, I have RA and tried the DMARDS , reacting badly to hydroxychloroquine, sulfasalazine and methotrexate being ineffective on its own and now on leflunomide. My lovely consultant ( who is brillliant ) then decided that biological were the way forward.

I went on Cimzia and within minutes of the loading doses ( 2x 200mg) I had an anaphylactic shock and was blue lighted to hospital resulting in an overnight stay after suffering a second reaction .

On returning home I have since reacted to foods that I have previously been absolutely fine with .

My lovely consultant was really upset and concerned for me and has now arranged an appointment with an immunologist to work out what medicines I can safely take as they do not want a repeat run of the cimzia reaction with another biologic.

I'm really tired and am needing time to recover from all the "excitement "

My question is this , what can I expect from the immunologist and has anyone else been through this type of experience with any other medication ?

I have been assured that this reaction is rare and they won't be risking my health by "pot luck " diagnosing .

The annoying thing is that the cimzia did seem to work it's just that it disagreed with me .

Take care everyone.

[Amy65]

I had same reaction twice to remacade infusion.lucky I was in hospital now tend to have allergies to hope u get sorted out amy

[Hidden]

How frightening for you! Don't have any answers I'm afraid. Good your seeing s specialist though. Do hope all is sorted for you.

[wishbone]

My rheumy referred me to an immunologist to check if it was ok to go back on meds after having to stop taking any due to recurring infections. Blood test some weeks prior to appointment with immunologist. Can't recall what they tested altogether, but very thorough covering a lot of things. I have a full report here somewhere that was included with a copy of the letter from the immunologist to my rheumy. Also had a consultation, including a brief physical examination - usual thing heart, lungs, blood pressure. Two students present during consultation, which lasted approx 45 minutes with questions asked about a number of health conditions I have. Thankfully most of my blood markers were ok so given the all clear to start back on meds. A new med in the form of baricitinib being the preferred choice. Been on it for approx 3 months. Still early days, but so far so good.

Hope things turn out ok.

[Downtime]

That must have been very frightening for you. I don’t have any advice but your consultant sounds very caring and I suppose an immunologist will gently test you for anything that might cause problems in the next treatment. Hope it all goes well for you

[Balletmum71]

Thank you all for replying , I'm hoping that whatever meds you are on and whatever stage you are at on this rollercoaster ride with RA that you will all find some relief very soon.

It's taking me a little while to settle down in all sorts of ways. My memory and concentration is very limited and the tiredness is very er tiring . It can become very overwhelming and I can go to sleep on the spot for acgood couple of hours ! It's like having a very intense flare .

I'm hoping that the immunologist will come up with some answers and that I'll be on some effective treatment sooner than later .

Take care everyone .

[wishbone in reply to Balletmum71]

I'm very limited to the number of different meds that I can take. My immunologist was asked to consider azathioprime along with the baricitinib. He explained to me why he preferred the latter.

Hopefully your immunologist can come up with something that will work for you.

Good luck

[Leics]

Hi, I’ve suffered with anaphylactic shock several times with antibiotics though. Funny but I’m fine with penicillin. I’ve developed an allergy to eggs too in the last 3 years don’t know why that happened. I’m currently under an immunologist but this is due to hypogammaglobulaemia. Immunology are very good with sorting severe reactions to drugs out as most of them are expert in allergy field too. Good luck I’m sure they’ll get you sorted in conjunction with rheumy with some effective treatment soon.