Morning everyone, I posted a little while ago asking about cosentyx. I've taken the 5 loading doses and with each one became more poorly like general sore throat and feeling under the weather. My arthritis was also playing up so much so I'm struggling to write this ! I went back to the Rheumy nurse who gave me a steriod injection to help me through whilst I wait for the Cosentyx to make some difference but the steriod injection has not worked and I'm worse than ever. Also in the last few days I have become so unwell I ended up going to the walk in centre my glands are up I'm extremely tired and I'm struggling to eat as my throat is so so sore ! He said looks like an infection but will let me try and fight it on my own ! I told him that being on an immunosupressant that will be very difficult but he seemed to just not care and sent me on my way. Is he right with this advice? I feel like I'm just being left to it. I have 2 young children and I am really struggling and never like to admit that. Should I seek advice from someone else ?
Consentyx and illness: Morning everyone, I posted a... - NRAS
Consentyx and illness
Personally I think the person you saw at the walk in centre was totally wrong. If you’re on an immune suppressant then they should not let you leave to fight a suspected infection on your own. Maybe time to have some blood tests done that would show inflammation and signs of an infection. Go and see your GP and get an appointment or failing that ring your rheumy nurse and get some blood forms off them. Don’t struggle and think you’ll be ok if you don’t tell rheumy they think you’re ok, which quite obviously you are not.
So sorry you’re really “under the weather”, Ewillow. It certainly sounds as if you need to seek further help. Have you spoken to your surgery as I would think that should be your first port of call. You may need to insist on being triaged/seen, so perhaps write down your symptoms (throat, glands, being so tired and generally run down) before you make the phone call. Then I’d let your Rheumy nurse know what the GP says and the non-effect of her steroid injection. They obviously assume all is well if you don’t tell them otherwise. Good luck and keep us posted.
I have been on COSENTYX for a couple of years. I did experience mouth ulcers and also conjunctivitis when I first started and since I still have had a few bouts of conjunctivitis. I think you should definitely contact rheumatology and also your GP without delay They need to know and are the ones qualified to offer advice. Despite initial problems COSENTYX has worked for me.
How can you fight the infection with a suppressed immune system, my gp told me stop my mtx gave me some antibiotics and a week later it cleared, once it was ok resumed Mtx.
If you have what seems to be an infection you need to be given antibiotics sooner rather than later if you are in biologics and immunosuppressed. When I have an infection the GP always prescribes an antibiotic rather than take any chances.
Thank you all so much. I am waiting for a call back from my GP I was very lucky to get an appointment. The walk in doctor has made me feel like I am mad ! Hoping this doctor who calls me actually understands what I am saying to him. I am not any better at all so fingers crossed some antibiotics are given to me so I can actually get on with life. I've recently had a blood test and I was low in B12 and Vitamin D so taking Vitamins for that. Will let you know if I am successful with this one. Thanks again.😀
Quick update I have been given some antibiotics! Hurrah! I must say it was a slight battle after being told that most people wouldn't get antibiotics for suspected tonsillitis but she wasn't sure as she can't physically see me. But I'm happy now. Thanks all again x
good news…🤞 they do the trick BUT you do need to let RA team know especially as you more than likely will need to stop Cosentyx until you’ve at least finished the antibodies ….see aliplayspiano above.
I am going to let them know for sure. I'm not due another injection until the 12th and this is a 10 day antibiotic course but I still need to make them aware I suppose. Thanks for your help.
🙏
Hi , I took cosentyx some years ago and I developed the same symptoms as you have. I had to stop taking it because it was making me extremely ill. You are not supposed to take the injections if you feel unwell. I would contact the rheumatology nurse and push the issue. Not every biologic agrees with everyone.
Yay to getting antibiotics. I would say if you need more get them after this course. Sounds wild but I had recurring tonsillitis for three months in 2020 because of biologics!
I went to my gp last Thursday with a sore throat was dismissed to get on with it. Just had bloods done at rheumy today and they called same day to say my crp is 85 iron is 1.8 and I’m not to leave the house in case i get ill.
I felt stupid calling the rheumatologist but boy I’m glad I did. Fighting and advocating for yourself is such an annoying part of this disease isn’t it. Hope you get sorted!!
Hi thanks for this! It's so hard because no one I know has any clue what this is like, so it's really nice when you talk to someone who gets it ! I'm having trouble getting hold of my rheumatologist but I'll keep trying for sure. Awful what happened to you, our own GPs should be way more vigilant with us guys on immunosuppressants. X
Hi there. Wondering how you are getting along and if you are feeling any better.
Hey ! I'm feeling absolutely fine at the moment. I'm still on antibiotics for now have 2 more days left. I'm due an injection on Wednesday but I suppose I'll have to skip that. I'm going to persistently call the rheumatologist nurse tomorrow in the hope of some advice. Thanks for asking. Hope you are well. X
I've had to do two rounds of loading doses because of a delay getting refills after having been on Cosentyx for a year. With the first round I had to take a week or two off after the 3rd dose because of a bad ear infection and was on antibiotics. When I did the second round of loading doses I think I did 3 then skipped a week and then started monthly doses. Had been advised to watch for being too much after first experience. Think I would finish the antibiotics before another dose. Check in with team of course but putting next dose off for at least a week seems sensible. Hope you feel better soon.
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