Hi all. I’ve been on monthly Cosentyx for about 6 months and in the last few months, because I was having a lot of symptoms by week three, my rheumy had me take the double dose (2 x 150ml) instead of the single dose (1 x 150ml) that I started on. This has really done the trick and I’m feeling TERRIFIC.
When I upped my Humira dose it was the same volume but I took the shots closer together. But with Cosentyx I guess they have two dosing levels and the smaller one wasn’t working so now I take twice as much. I’m curious about the difference in approach (taking a larger dose with the same interval between shots versus the same dose more frequently). Does this have something to do with how different drugs are metabolized? The pathways that they work on?
And a related question, how do you know if your body “fights” the medication? At what stage is the addition of MTX to a biologic (to slow antibody production?) suggested?
Inquiring minds want to know…
Hi Jane, really glad to hear you’re doing well on the Cosentyx. How is it for your skin involvement?
I’m in a similar dosing situation (although much longer in) with Simponi … the lower dose wasn’t cutting it so my rheumy put me on the higher dose. That’s been about 2.5 years now but it took a good 3 - 6 months on the higher dose to really knock my problem joints back in to touch.
As for now: Am I the best I’ve ever been? No! Am I the worst I’ve ever been? Hell, no!! There is always something or somethings causing me a problem, I’ve kinda got used to the constant but mainly bearable functional aching, pains and tweaks. BUT what I do know is that alot of this day to day stuff is usually soft tissue involvement … and I know this because when something gets particularly bothersome (or just plain impossibly painful) I invariably end up underneath an ultrasound probe while they look to see where best to inject the depomedrone/lignacaine solution. I actually get very little joint synovitis.
From what I’ve read and discussed with my rheumy, the bio’s are not always so good with the soft tissue stuff and enthesitis so whilst I’ve questioned whether my body is fighting the Simponi, the medics still seem pretty happy with the control it has over - in their minds - the bigger picture stuff.
I don’t tolerate mtx very well so have never taken it in conjunction with a bio but my thoughts would be that to add it in when those pesky little antibodies are already on the rampage would likely be way too late.
Would also add that in the UK the rheumys have less freedom or room for manouevre on doses and dosing intervals of the bio’s due to having to comply with NICE guidelines which determine what the NHS will fund. Thankfully the Simponi manufacturers provide the 100mg dose at the same price as the 50mg otherwise there is no way I’d have qualified for the higher dose.
Great questions. Hope other will add their experiences. J
Hey @Jules_G! Nice to hear from you. Glad the upped dose of Simponi is helping. The Cosentyx kept sending me into a brief post-shot psoriasis flare–but not this month. I think it was a shot/stress combo but I had the worst scalp P I’ve had in years plus some other patches and VERY painful sores around my eyes which all started 3-4 days post injection for the prior 3 months. I see a dermy in mid Feb to talk about all this as the steroid creams I have for my face and arms can’t be used near the eyes.
I didn’t fare well on MTX but as I have gotten relatively short periods of relief from biologics before they start to wane, I’m thinking ahead. I don’t even know if that’s the reason why a biologic would start to peter out. Need more scientific help from the community to help me with this!
Good luck with that dermy appointment. I’ve got a visible plaque on my face for the first time at the moment, right in the inner corner of one eye. It is so sore and itchy. Seeing the optometrist on Monday … quickest appointment I could get (!!) … but as an emergency measure over Christmas I applied a tiny smear of steroid drops that were unopened in my emergency meds cupboard as they were an ear/eye/nose drop prescribed just in case my ear canals got bad again. It’s got my eye through. Will let you know if I learn anything new on Monday and if you can do the same after your appointment it would be much appreciated.