I have been using Protopic ointment for Inverse Psoriasis for 14 years and it has always worked for me. I tend to get psoriasis flares on areas of sensitive skin…commonly my eyelids. Protopic works well with each treatment but the side effects are pretty miserable as my whole face feels like it is on fire. Bad enough to keep me awake and if I am in the sunlight, not just my eyelids but my whole face feels sunburnt.
The dermatologist that I saw in November gave me a “get one free card” to try Zoryve. I thought Protopic was expensive at $160 for 60grams. Zoryve is at least double that here in Canada. But since I like free stuff, I am giving it a go. Too early to tell but so far, 3 treatments of Protopic is more effective than Zoryve. If anything, my eyes are now very itchy. Anyone else using Zoryve and have some thoughts?
I just looked it up. It says it’s not to be applied to the eyes though, or lips or the vagina not that that last one would concern you! But obviously it’s not to be applied to a part of the body that can be moist from tears, saliva or other secretions. I would go back right away to your dermatologist.
Well that’s part of the frustration. The dermatologist prescribed it, the pharmacist also said it’s fine to use “carefully”. But the warnings exist. Because the inverse psoriasis tends to inflame right into the corner of my eye and block the tear duct, that’s where I need the cream. But how does it not seep into the eye itself? Zoryve is very new so I have concerns about its safety. After all, we are guinea pigs for many meds. At least I have history with Protopic that it hasn’t caused vision problems.
That would worry me too. What does your optician or eye specialist say? Have you actually tried any eye drops to see if they help? Just a thought. Have they sought to put teeny plugs in your tear ducts to help? Have you consulted an eye expert? I would if you haven’t.
I can suffer what I think is inverse psoriasis in the folds of skin. My go to option for that which clears it up in around 48 hours is simply nappy or diaper cream such as sudocream. However that can’t be used in the eyes either I’m assuming. The reason it works however is that it’s a skin barrier cream and stops the moistness from happening so the process stops.
So given how inverse psoriasis works it seems to me allowing your skin immediately around your tear duct dry out for a day or two only might help.
We’re less of guinea pigs that we were say 20 or 30 years ago these days, other than they won’t yet analyse our specific DNA to know better as regards which med might work better for us individually yet, although the science on that is rapidly moving along now. But I’m wondering how much analysis has been done on your eylids to identify the problem properly, rather than just the ‘look at it only, and given you yet another cream to try’. How are they sure it’s inverse psoriasis?
I assume my skin fold is inverse psoriasis but it could also be a fungal issue. Either way sudocream works on both so that’s how I deal.
Thanks. When the inverse psoriasis is active it usually hits my eyelids first and then moves elsewhere like behind my knees, some scalp, ear canals, inside elbows. Always the same…red, never flaky, smooth and a shine to it. I’m not scheduled for an eye specialist til May. Taltz has been quite effective on psoriasis issues reducing it to only a few coin sized spots that are usually dealt with as needed. The eyelids are just very hard to ignore as my eyes water constantly and get very red and sore. The dermatologist said she could do a biopsy from an eyelid to confirm but it leaves one with a black eye. The Zoryve is starting to work and so far no vision issues or side effects. Protopic worked quicker but I didn’t like the side effects.
I was using it before my old insurance changed the access rules as I am also on Rinvoq. It is the same medicine as Otezla but in a topical, The benefit I was told that it did not have the steroid restrictions of thinning skin .
I am also on Taltz, and it has done a pretty good job of controlling the pustular psoriasis. However the breakthrough psoriasis can be troubling, and my previous topicals weren’t having much impact. The Zoryve, although ridiculously expensive, has produced excellent results, very quickly.
Ive been on Taltz for several years. Eighteen months ago, my rheumatologist suggested the dose be increased to bi-monthly, and applied for the drug company’s compassionate program.
I have been doing well on this regimen. My joint pain is largely confined to my knees - which is annoying since PsA destroyed my real knees, resulting in two tkr’s. The pain is usually the result of working out too aggressively.
So, the Taltz is doing well for me.
Any med that works optimally for you will also dampen down enthesitis. No med that we take deals differently with any symptom of PsA in that kind of way. Given enthesitis is tendon inflammation oriented it’s often the last symptom to be resolved too. If you think about it, if you break a bone, it takes pretty much about 6 weeks to heal. If you tore your Achilles Tendon for example (a great enthesitis place too) it will take at least 4 to 6 months to heal. Tendon issues howsoever caused will take much longer than expected by most of us to heal.
Thanks @Poo_therapy that makes a lot of sense. I have never considered how long it takes for tendon healing to occur. There seems to be the slow advancement of enthesitis that should be able to be viewed on imaging but what about the rapid way that pain can hit and leave and come back again. During my night ordeals with pain I can 4-5 different areas that come and go and they can be bad enough to keep me awake. For example, one finger can be raging and then it fades but a shoulder or feet start yelling. But I haven’t had a rheumatologist address that sort of issue…largely because by time I’ve stretched and done my exercise routine, I’m doing much better. But my wife would not condone me suggesting that I sleep with my rheumy so she can see me at my worst. Something sounds wrong about that last sentence!!
But that’s exactly how PsA behaves. That’s its defining characteristic, this constant flitting about of inflammation making the patient and many doctors think it’s all in their head. That’s also why MRIs and US scans are so bad at finding PsA inflammation too as it’s flitted off before the scan or doctor’s appt can happen. That’s exactly why the PsARC exam was developed too given it’s essentially an all body scan using the rheumy’s hands so has a much better chance of finding any inflammation at the appt.
When I go in to see my doctor I’ve usually been keeping track of the ongoing issues. Actually, I’m seeing her tomorrow and will finally have a decent report. Almost 6 months on cosentyx and there’s definitely been positive movement
It is definitely good to share improvements. Sometimes it can get discouraging waiting for meds to kick in and knowing that something will take a while makes it easier