Warning that whilst I don’t usually whinge about my first world PsA problems (I call them first world as my PsA is generally well managed), I’ve been feeling browned off for weeks (actually all of Australia is browned off and burnt out at the moment if you see any international news…), so I’m going to have a vent.
Feel free to tell me how lucky I am, to focus more on the present (cause re-reading this it is all worries about future ifs and maybes) or just send some virtual hugs my way.
After a wonderful year or so on Cimzia, it looks like I am having an immune reaction to it too (some of you might remember I had nearly 2 years of MS-like symptoms until we finally figured out it was an immune reaction to Humira).
So now I have lovely red inflamed blotches on my face, some of which resolve with pigmentation changes (and one looks like it may have very mild scarring). Haven’t been to the dermatologist yet, as both the GP and Rhuemy think it is probably due to the Cimzia (and it does look remarkably like it is mimicking mild Discoid Lupus), so once my UTI (which has been on and off chronic since August) resolves, the next action is to take the Cimzia again, to confirm it is the culprit.
Yay, cause everyone wants to give themselves an injection of something they know has a very good chance of causing further pigmentation / scarring on their face…
But that is not really the thing I’m browned off about. It seems like my immune system may be just one of those that likes to be reactive with the biologics. This of course leads to an underlying worry that I am going to run out of effective medications that are subsidised by our pharmaceutical benefits scheme way too early - after all, I’m only 44, trying to raise my daughter, and am still renting and trying to buy a house (we have the second-most unaffordable housing in the world, and the fastest growth of homeless in Australia are women over 50 who have lost their jobs).
So, Humira and probably Cimzia down, Remicade and Simponi to go. Or maybe I’ll just have Discoid Lupus to add to PsA and IBD! At least the inflamed patches on my face don’t seem to have any systemic features going on with them, maybe that won’t be so bad after all…
That stinks. I’m close to your age, and definitely have worries about my future. So seeing another biologic possibly crash out for you would be worrisome to me too. I keep thinking how glad I am that there are new ones every day, but this isn’t the first one that you’ve had a reaction to.
Big hugs to you. I have no solutions, but i feel your pain.
First world life is complex & anxiety’s built in. We have to worry about the future 'cos if we take our eye off the ball it all goes to pot.
The most difficult and frustrating year of my fabulous ‘PsA journey’ was the one involving skin rashes etc. I’ve banged on about that often, but the upshot was that at least 6 different skin conditions were considered, including discoid lupus. Turned out it was all psoriasis, most of which manifested atypically due to being on a biologic or perhaps because I’m just an awkward customer.
I hope you get resolution soon. Totally understand how very, very annoying and worrying this all is. Vent away Jen, hang on in there and enjoy all the worry-free moments you do get.
Yup, Australia has a “pigmentation” problem and everyone needs see their Dermie annually (as should anyone with PsA) But keep in mind and I hate to say this, but you may only be 44, you are going to get some pretty weird pigmentation changes anyway. Check wit your Gyno too. FWIW My face (in my late sixties) is starting to look like a leopard (as does my my non PsA sisters…
Thankyou for reminding me about all those drugs in the Pipeline! Australia is always well behind, but we do follow, so that is very hopeful.
It would be interesting to see if a biosimilar to Humira would produce the MS-like side effects in me, though I am not sure I’m going to volunteer to be the guinea pig (and I really think I’d be susceptible to convincing myself into side-effects, as they were initially so very subtle with Humira)
Even at 44 I’ve already got sunspots, from an early life of working all day in the sun. I guess they may just get a lot of friends!
Interestingly enough I looked a lot more leopard-like this morning when I got up, despite being more than a week overdue for Cimzia. A LOT of smoke in the air today (our air quality is worse than Beijing at the moment), and it occurred to me that perhaps the first GP was right - maybe it is a contact irritant - just that I hadn’t thought of the smoke as a potential contact irritant.
I worked in the sun a lot in my younger years, including as a lifeguard. I started using daily 15spf, and have found that my skin has improved over the last year plus. There’s always hope!
The fires were horrible here this year. Street lights never went out for days and I developed some doozeys…
Non-comforting factoid. Australia has the highest Melanoma rate in the world with 54 cases per 1000 population the next highest is the USA with 21. PsA patients have a rate about about 64% higher than the general population. Play with the numbers and those spots have a 1 in 7 chance of being something else. Any history in the family and its not if but when. SEE the Dermy PERIOD. I’m passionate bout this VERY passionate. My son lost his first wife in her 30’s to the disease. She ignored me saying that “spot” was part of her tattoo… I made mention of Pseudotumor cerebri in another post. His current wife has been disabled from that. Figured MMJ was enough tretament cause the ice pick headaches went away. So you might want to think I’m a bit of a crank and likely am. But Humor me please. See the Dermy regularly I’m still planning on Backpacking with you and your daughter…
Here is loads of virtual hugs from me. For facial skin issues, UTI’s and most of all for fires and smoke.
As you know a biosimilar to etanercept (Benepali) didn’t last the distance working for me - was on it 11 months and it really only worked for 3 consecutive months of that. Next up was a biosimilar to humira (Imraldi) which hated me from the word go. Knew it instinctively from the first injection. It inflamed my bowels, reignited my asthma and had me wading through an impending sense of doom for the 8 very long weeks I lasted on it.
So according to my rheumy, she said I guess you’ve never going to get on with the anti-TFNa ones then, of which Cimzia and Simponi are too. And I think Remicade, although I’m not sure on that one.
So she prescribed Cosentyx which only messes with interleukin 17, Talz is another one which does this but it’s more expensive. And there are other interleukin ones too affecting different number than just 17. Plus some JAK inhibitors where I believe loads of research is going on. So there’s certainly good reason to hope and have proper rational hope too.
I’ve only just finished the 5 weekly injections of Cosentyx and now it goes monthly. So my next injection is at the end of December. This far I’m completely astonished. I’m virtually pain free already having spent most of this year with significant hip and back pain. I can’t see any swollen joints anymore in my hands or ankles. My energy levels are increasing daily. My walks with the dog are getting longer and faster. And boy do I finally sleep well again. It’s really early days yet but I’m properly hopeful.
I’m not sure what Australia funds or doesn’t fund but it can’t only be anti-TFNa ones, surely? Not when even our seriously stressed NHS funds the rest of them. Maybe Jen you’re not too dissimilar to me, whose body appears to think the more blanket anti-TFNa meds are total waste of time? Presently my body is much prefering having only IL17 manipulated that’s for sure.
Thanks TJ, I still have that Hiking trip in the back of my mind too. Might have to move it up front and make a plan!
You are right about the dermy - my last skin check was nearly two years ago and it honestly felt pretty cursory. I’ll call Monday to make an appointment, and if I’ve still got leopard spots by the time I get an appointment, it will be a two for one deal
Thanks so much Poo! I think You are right - there is a lot of hope, and because I’m kind of weird on the spectrum between PsA, RA, and Crohns, I guess part of the reason my list was so short is I’m looking at the ones that generally work for at least two of the three (Crohns plus one other), and are on the Australian RA list (Rhuemy made this my official diagnosis for the paperwork because it has the highest number of drugs approved - so I’ve gratefully got that bonus!).
Since I do not seem to fit properly in any of the individual boxes though, another way to look at it is that perhaps most options are open, and who knows what will work for me.
I am so pleased that the Costenyx is working so well for you! It is definitely time you got a lasting success! Warm virtual hugs right back at you
Don’t forget I’m RF positive too! Thankfully though my only digestive tract issues appear to be med induced ones this far. Cosentyx though is contra indicated for any IBD. I forgot that yesterday. But dang it - I’m guessing, you anyway, need to be experimemtal on other ones. Although Remicade always seems more successful from my observations.xxx
Well, woke up without any extra inflammatory patches - which is probably a miracle in itself because I’ve had new ones almost every day. Still getting pigmentation and slight scarring on resolution, so I guess I’ll have to get better at makeup, and the dermy will have to give me a two for one!
I hope your system is doing better than the NHS is at the moment. Just had yet another appointment for AK on my nose. Including freezing no. 3, I was in there for 8 minutes 10 seconds. Yes, I time it.
I had to struggle like mad to get the second appointment way back, basically told I was being silly. Now they are going to do a biopsy to check for Basal Cell after Xmas. There is no question I can ask that is sufficiently short and to the point for the doctor not to butt in with some brush off. Sick of battling but getting more militant by the second!
What’s AK?
Whatever it is, get that biopsy. Mine was BSCarcinoma, and I got it removed. They said it was a simple procedure, and it was. For them. I got over it. And my nose is no worse looking than the rest of my face.
