My daughter has started on this drug for psoriatic arthritis. I really hope it helps her. She is afraid of needles and I think she may not tolerate it well. I would like to be able to tell her about someone else who is on it and it is helping them Any Gransnetters on this drug please or any experience of it would be helpful to know. Thank you
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Cosentyx- Secukinumab
(10 Posts)About 13 years ago our youngest D was offered and started a 5 year drug trial at Bart’s for Psoriatic Arthritis with one of these (unpronounceable) immunotherapies ending in - mab.
It was MAGIC
She was 30 when she started , had been limping seriously, in a lot of pain and finding it especially hard as her job involved frequent long haul flights to China and flat- bed was not always available. It broke my heart to see her limping up the aisle at her wedding too.
Her psoriasis cleared up completely and it was a joy to see her out of pain and clear skinned.
The one down side was that she and her husband were told “no babies” as the drug had not been tested in relation to pregnancy and she actually took herself off after 4 years as she was nearly 35 by then and they wanted children.
So once she had completed the obligatory 6 month wash-out period they started trying for a baby. The boys are 6 and nearly 4 now and although the drug has since cleared for use by NICE she has not gone back to it (years of pregnancy and breast feeding)
Admittedly there has been a return of patches of psoriasis but she seems to be keeping the arthritis part of it under a degree of control with diet and herbal remedies. I don’t enquire too closely as I don’t want to be seen to fuss!
Good luck to your D, she is very fortunate these therapies now exist.
The "mabs" are generally very effective drugs and some of the other treatments for psoriatic arthritis do have lots more side-effects. And usually you need a blood test to monitor liver enzymes / drug levels etc with traditional drugs which can be painful compared to an infusion.
New "mabs" (I think this one is fairly recent) seem to be infusions initially but sometimes they develop an injectable or tablet form later on, so I would encourage her to see how she gets on & I hope it works well for her as it's a horrible illness to have.
I've been using Cosentyx for around two and a half years now. Like your daughter I also have psoriatic arthritis and over the years have tried other immunotherapies, ones that also end in 'mab'.
Cosentyx has been the most beneficial one for me. I'm very happy the way it controls the extreme pain I used to get in my joints. I use an epi-pen type of syringe, once a month. These are very easy to use, easier than the regular type of syringe I used to use with other brands of these type of meds. I don't find it painful at all or scary as the needle is tucked inside the applicator rather than having it out on view.
Probably the only suggestion I would make is to leave the syringe say on a bench to let it come up to room temperature before using. If it's used straight after being in the 'fridge it can be a little bit 'bite(y)' but otherwise not painful. It's so good to be free of the arthritis pain. All the very best to your daughter.
valdavi
The "mabs" are generally very effective drugs and some of the other treatments for psoriatic arthritis do have lots more side-effects. And usually you need a blood test to monitor liver enzymes / drug levels etc with traditional drugs which can be painful compared to an infusion.
New "mabs" (I think this one is fairly recent) seem to be infusions initially but sometimes they develop an injectable or tablet form later on, so I would encourage her to see how she gets on & I hope it works well for her as it's a horrible illness to have.
Cosentyx has been available for around 10 years. It's a subcutaneous injection for patients
Samsara1
My daughter has started on this drug for psoriatic arthritis. I really hope it helps her. She is afraid of needles and I think she may not tolerate it well. I would like to be able to tell her about someone else who is on it and it is helping them Any Gransnetters on this drug please or any experience of it would be helpful to know. Thank you
I have been on one of the “mabs” since last July. It took a few months to work fully but now I am free enough from my pain not to have to take any painkillers, my mobility is a lot better and my skin is clear except for one or two very small patches.
I feel 100% better than I did before I started it.
It’s a pen type of injection taken fortnightly and only stings if used straight from fridge. I leave it out of fridge for about 20 mins and swab my skin with an alcohol wipe and let it dry.
Obviously it’s a personal decision, but I was told by my Rheumatology that it works to stop your joints deteriorating and better to take it as early as possible in your treatment.
Wishing your daughter and her family well.
I’m not on Cosentyx myself, but a close friend of mine has been using it for just over a year now for her psoriatic arthritis. She was nervous about the injections too at first, but she said the auto-injector made it more manageable since you don’t see the needle. It took a bit of getting used to, but now it's just part of her routine. She’s noticed a big improvement in her joint pain and says she’s moving a lot easier than before. I hope it works well for your daughter, too.
I’ve been on injectable biological treatments for psoriatic arthritis for twelve years. The drugs gave me my life back, I’m fitter, more flexible and stronger than I was pre biologics,
I am on this injection and have been for many years. It really is good. I was covered in thick psoriasis - my back and scalp were particularly bad and in fact I started losing my hair. This injection has changed my life. I am now pretty much clear of psoriasis and my psoriatic arthritis (in my hands and feet) is a lot better now too. I still have bad days but nowhere near as bad as before. I honestly would highly recommend it. She can also give herself the injection (I do or my husband gives it to me) and that may help her feel a little less anxious as she is then in total control. Tell her not to worry, it is definitely well worth it in my opinion. I hope she goes for it and it works for her.
Thank you all so much for these hopeful messages that I can talk to Victoria about. She does have an epi pen but still has a 'thing; about injections. I wish I lived nearer to her so that I could help. I'm juts so sorry that I have passed this awful thing onto her. Thankfully her younger sister does not have this just a wonky knee from too much running.
Thank you once again and thank Gransnet for making this help available. 
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