Adverse effects to stelara

Posted Wed 17 Mar 2021 01.37 by cath13

Hi ive been on stelara sonce 2014, came off it march 2020 as having problems with my throat, im now covered head to foot in it, have lost lots of weight in the past 3 months, feel feverish, in and out of sleep, fatigue, have a red swolen finger and the psoriosis is bright red, and generally feel unwell, have got psoriosis now under my arm pits and daily tiny spots of it coming up all over, has anyone else experienced this after coming off it? Om been fobbed off continuoisly by the derm and my gp, im at a loss at to what i do.

Posted Wed 17 Mar 2021 10.05 by FairyDust

Hi Cath13 Poor you. Sounds like you need some proper help. I had to stop my first biologic due to allergic reaction 6 months into having treatment which I was told is rare. I then had to be bad again to qualify for Stelara. Sounded mad at the time. It have been ok and no reactions. Been on it for 8 years now. It’s seems like you really need to get your GP involved asap and get them to send you to Dermatology on call at the hospital and get checked over as your skin is red and painful all over and you are having fevers and are fatigued. Please don’t leave this. If no joy at GP ring 111 they can advised but please get your self checked out. Either way you have to demand to be seen now. It is not ok to be suffering head to toe with inflamed skin getting worse by the day. You are entitled to get help and treatment. Good luck and I wish you well xx

Posted Thu 18 Mar 2021 17.12 by PsoAdminMod

Hi Cath13, Amber here from the Psoriasis Association. We're sorry to hear about the extent of your psoriasis at the moment and that you are feeling unsupported by your GP and Dermatologist. If you would like to get in touch with us we would be happy to offer some information and advice for accessing treatment and to help you manage your skin. Our helpline is open Monday - Friday 9am -4pm and you can reach us by phone on 01604 251 620, email at mail@psoriasis-association.org.uk or WhatsApp on 07387 716 439. Given that your psoriasis is widespread and you are experiencing a number of additional symptoms that are making you feel unwell, we would advise you seek medical attention. In the first instance we would recommend trying to book an appointment again with your GP. Try to be as clear as possible about the extent of the symptoms you are experiencing; this may mean requesting an in-person appointment so that the GP can see your skin. If you are unable to have an in person appointment you can ask if you can send some pictures of your skin to your GP in advance, or request that the appointment be via video call so your skin can be assessed properly. Given your symptoms, if you are unable to get an appointment with your GP we would recommend you call NHS 111 for advice. We hope this helps, Amber Psoriasis Association

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