I have had RA for about ten years and its been reasonably well controlled and then all of a sudden none of my drugs work (Methotrexate 15mg, Hydrocloroquine and Leflomide) likely due severe stress when my husband died in my arms a year or so ago and im now about to start on a Biolgic called Amgevita
I am reading about the side effects and they sound awful especially the risk of Anaphylaxis which worried me as a few years ago i was stung by a wasp and had a bad reaction resulting in me being given an Epi Pen. Ive never had to use it thank goodness but the thought of now taking a new drug and the pretty awful side effects like Anaphylaxis really frighten me as i live alone
Any thoughts/suggestions much appreciated
Thank you so much
Written by
magical1234
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It is extremely rare to have an anaphylaxis from biologics. Usually you are supervised by a nurse for the first 1 or 2 injections, purely for this reason. They carry a kit to treat anaphylaxis. If you were to read the patient information leaflets, on most meds, you’d be surprised how many mention it. The nurse who visited me, said she’d never had anyone react to biologics, except for a localised reaction. If there isn’t a nurse visiting you could ask your practice nurse or rheumatology nurse, if they’d supervise. I’ve been on mine nearly 8yrs and had no reactions. No matter how rare these incidents are, they do need to list them. The benefits from biologics can be life changing
Thank you Runrig01 for your comments- much appreciated- thats a good tip to see if my local practice nurse will supervise when it gets to my second injection as the Amgevita team that come out will only come out once to show me how to use the Biolgics. The reason they said it would now be once was that because i had cancelled before and i have now lost my opportunity to have them visit twice and supervise me. I understand but i felt they were a little harsh on me but rules are rules i know
Like you I was very anxious/sceptical about going on Amgevita injections.
Needless to say I needed not have worried as Amgevita worked and it got me into a 15 month remission. So best foot forward and fingers crossed it works
Oh thank you- i have felt a bit of a failure today but your words of encouragement have helped. They are giving me another chance to have the injection in two weeks so fingers crossed as you say and so glad you got 15 months of remission. I think i wont know what to do with myself if it works!
I can’t add anything better really then what Runrig had said. She echoes my views on this. I’m quite an allergic person but never have had an anaphylaxis to a biologic and the nurse will stay with you after with her specialist equipment. When I had a nurse attend 2 years ago for a new biologic, she said she’d never seen a reaction to one in 15 years of being a visiting nurse for biologics. x
Helloi sorry to hear about your husbands passing and in such sad circumstances too. My love and thoughts are with you.
I was supposed to have my first biologic injection last Friday but it never happened.
I hadn’t realised that when you first register with the company “Healthnet” who will receive information from your hospital with your prescription. That the first delivery is made of two injection pens, then on the same day a nurse will ring you to book your first injection so that a nurse comes to your home to administer and to watch over you injecting your first biological who will have a lot of kit with them incase you go into anaphylactic shock.
Sadly there had been a mix up and they said that the hospital had not authorised the payment for the nurse to attend and tried to fob me off with receiving an online video to teach myself. I said that’s not what I was advised by my specialist and pharmacist at the hospital and so refused. I put in a complaint too.
Within ten minutes of the phone call on the Monday to health net they called me back saying that they had found the email from the hospital authorising the nurse visit!
If you have any concerns please ring the rheumatoid nurse care line at the hospital and speak to a it’s about your concerns.
I was also very unsure about taking Amgevita after reading the list of side effects So far , so good after 4 months
I was put in touch with Sciensus who provide patient support ( no payment needed) I had 2 initial visits from a nurse which were very helpful and Sciensus sort the delivery etc I think this service is offered in different areas
It is very straightforward doing the injection and am someone who dislikes them a lot! I am about to have my review with the rheum team
I’ve had RA since i was 21. (53 now). I’ve been having an infusion of Infliximab for 20 yrs. I’m sorry. I don’t know about your meds. I just wanted to say i’m so sorry about your husband. Must have been awful for you. At least he was with you when he passed away. I lnow you must be extra nervous about the injection, as you live alone. Good luck with everything. X
Runrigs comments are absolutely spot on. I’m very like you as I seem to be reacting more & more to meds or the just don’t work, I also carry an epi pen for nut allergy (this became apparent around 8 yrs ago) like you I’ve never used it & certainly don’t want to. However I have been on Amgevita and as Runrig said I had my loading dose supervised. I never had a problem with it, just unfortunately it didn’t work for me though that doesn’t mean it won’t for you as we all know to well, it’s not a one drug fits all, I bet the Rheumys would love it if it were that easy. I hope this is helpful to give you some reassurance 🌸
I can understand your apprehension but you will be taken good care of by the Nurses on duty, they check you constantly and there is always artleast one in the area . Try and relax and enjoy the time for yourself with a book or music with headphones . Not had the drug you are about to start but l am on similar and l just look at it as relaxation which will benefit me . If you are worried about your reaction have your epilepsy pen on you . Take care
I am sorry for the loss of your husband can’t imagine how you are feeling but my thoughts are with you.
As for the biologics, it’s reasonable to feel nervous about reactions when they are administered. I have been on my fair share of them but one drug, Actemra, was a monthly infusion had a slow reaction for me. I am sensitive to drugs so have been a bit of a nervous cat about reactions
Actemra, Month 11, I asked for non drowsy benedryl in my IV as I had to drive after the infusion. When I returned home, I went right to sleep on the couch and woke up at 7 pm without saying good nite to my husband or making dinner anything and went straight to bed. In the middle of the night I felt like my husband was sleeping too close to me or I was getting claustrophobic. I wasn’t sure I was just really uncomfortable. I got up early and my face, eyes and neck were so puffy it was scary and it was really hard to swallow. I was not the same person. I went to emergency and the doctor said maybe I had food poisoning or something. I told her that it was a Saturday and I could not call the Actemra nurse hotline as it was closed so that’s why I was at emerg. I told her to Google this drug and reactions please. She finally did and believed me and gave me IV drugs to counteract the reaction. I was there for about 10 hours and she told me never to take that drug again as I could have a heart attack. I went home with an épi pen. I was surprised as it was a slow reaction to a drug I had been taking for almost a year and it was working so I was very annoyed that I had to stop it but better safe than sorry. This is pretty rare but it happened and I am only telling you my story as this was a slow reaction, not immediate. I am sure you will be just fine but have a friend spend the night with you if you are anxious maybe just the first time you get the drug. It’s always better to have an abundance of caution than not when you have had reactions to anything in the past.
hello, I had a anaphylactic reaction when on MTX and had to take ibuprofen and penicillin as I was not well with a chest infection. I am prone to be sensitive to medication but now i take anti histamines a week before a new drug and then have someone with me when introducing a new med. It’s not happened again but doctors said to do antihistamines, as a possible help and for me it calms the mind.
Biologics been so much easier but you have to get back on the horse to have a med for the RA.
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