Cimzia reaction- change to Benepali: I took a first... - NRAS

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Cimzia reaction- change to Benepali

BlightyFiveStar
BlightyFiveStar
10 Replies

I took a first loading dose of Cimzia last week and immediately my lips felt prickly and strange. The visiting nurse wasn’t too worried as no visible swelling, and left. Then later the front of my face felt really hot and strange. After about 4 or 5 hours it went away again. I called the hospital today as after this I was scared to do second dose alone next week in case had full allergic reaction. Now they’ve said stop Cimzia due to anaphylactic risk and they will change me to Benepali. This means a delay while it’s al set up which is a little frustrating. I am still on Metoject but it’s not holding the RA well and my elbows and wrists are really hurting which is new in last few months. Been on methotrexate 2 years now and it’s a long slow road. Not sure how I feel about this new plan but don’t want the worry of allergic reaction every time I inject, so I guess caution is wise.

Has anyone else had this sort of thing happen? I’m aware both Cimzia and Benepali are anti TNFs so wondering if you react to one, are you likely to react to another since they are same family of drugs?

Thanks for reading

10 Replies
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Moomin8

Hi, I am sorry to hear that you had a reaction to Cimzia; I too had a reaction for the first few weeks. I was on some sort of nurse/trial thing where a nurse was to be there for the first 3 times and had to be on the end of a line if needed after that. I had to answer a number of questions each time- not a problem at all! She sat with me and asked how I was feeling at different intervals both before and after; she didn't leave until she was confident that all was ok. I had a tightness in my throat and my lips went fizzy. I took an antihistamine and it was ok. The same happened the next few times and the antihistamine sorted it. The reactions reduced over time for me tbh. If I get any rashes or tightness etc, which I sometimes get when I've had to stop and start mtx over time, I am lucky that an antihistamine (cetirizine-or something like that) was suggested and works for me. I would never suggest that this is done without medical supervision, of course. Good luck with your new med; hopefully all will be well. I understand how frustrating it can all be. We are, most of us, on that never-ending rollercoaster, but hey-ho what choice do we have? Stay positive x

Reply
cathie

It’s routine to take antihistamines with biologics in hospital infusions so it’s a good idea to check this with the medics.

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Raven15

I’ve been on Methotrexate for 9 yrs and have recently been put on Benepali. I’ve really struggled this past 7 weeks with extreme pain in my wrists/hands. Fortunately it’s been one hand more than the other on any one day. In desperation on Monday I bought Epsom Salts & Dog Oil. Soaked up to my elbows in warm water with The Salts for 15mins and applied the oil. Within an hour my pain had eased and the improvement has continued. I’m doing this morning and evening, not saying it’s an answer for all but it’s helping me at the mo and all for £6!!

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Georgiab123
Georgiab123
in reply to Raven15

Hi wots dog oil iv never heard of it , need something in bath for pain in neck unbearable at times

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Raven15
Raven15
in reply to Georgiab123

Have you tried Epsom Salts?

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Georgiab123
Georgiab123
in reply to Raven15

No but going to get some and try anything for pain relief

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BlightyFiveStar

Hi thanks for the reply, do you mean CBD oil? Not sure what dog oil is?

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Raven15

No not CBT oil. I don’t know where you live but it’s sold in the UK in Holland & Barret shops. It’s marketed as Masons Dog Oil. It contains minerals, that’s all it says on the label.

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Georgiab123
Georgiab123
in reply to Raven15

Good I’m going into Newcastle tmoro il get some

Reply
Balletmum71

Hello there , I had a type one anaphylactic reaction to cimzia. I am being investigated for something in the " holding " liquid which is called macrogol and also known as polyethylene glycol , I was told that it is unlikely that it's the actual cimzia itself .

Well after numerous reactions to all sorts of dmards and antibiotics and other things that I've never been allergic to in my life the team in Plymouth have now been giving me benepali bit by bit and I mean in very small increments 1/1000 , 1,500 1/200 and tomorrow I get my other doses.

So, how am I thus far? Well, it seems to be going well and although I'd like to remove my ankles , feet and hand joints due to pain and hot joints -( I had this reaction last time and it lasted for 24 hours ). I've not had any allergic symptoms or reactions at all . So please don't worry , and in answer to your question , benepali is different to cimzia and doesn't t contain macrogol .

I hope this puts your mind at rest and because of your symptoms from last time. I'm sure the nurse will be on full alert and at the slightest reaction treat you accordingly.

Take care and all the best xx

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