Hi friendos!

I have very severe psoriasis and psoriatic arthritis, which is out of control and debilitating. I leave a visible trail of flakes everywhere that I go, and no longer feel comfortable going out in public unless I am covered up extremely well.


I have gotten Taltz (ixekizumab) injections before, however my insurance decided that my skin is a nonessential item, so each syringe would cost me "$6,272.80 per individual pen", however it completely fixes the psoriasis in around a week.

Words cannot describe how frustrating this disease is, and how much it has affected my self-confidence. But, since psoriasis this severe is pretty rare, I figured I'd do an AMA if people had any questions about it since it probably looks like I look like I have leprosy. There are miracle drugs out there which fix the issue, but it doesn't help anything if insurance plans aren't willing to cover the cost 😣

Comments: 2368 • Responses: 23  • Date: 

Theoren18138 karma

Does your insurance not cover it or do you have a large deductible?

Also, have you looked in to assistance programs? Has the insurance said what their preferred replacement is?

I work in pharmacy, if you showed up in my pharmacy, I’d run this prescription through, if your insurance didn’t cover it, we’d have the doctor either try to get a prior authorization or switch to the preferred medication.

If you had a huge deductible, I’d get on Taltz site and try to get you set up with the manufacturer’s coupon program.

So, how can I help?

Edit: 1-844-TALTZ-NOW (1-844-825-8966). Call and they will work with your insurance company to get you covered

tylero0564596 karma

My insurance doesn't cover it, but thanks for the info--looks like I have some homework for today! I appreciate it a ton!

faahqueimmanutjawb55 karma

I feel ya mate. I've had psoriasis for almost 20 years. It's up and down with severity as you'd know - had to take a month long break from work about 10 years ago because it got so bad that my legs had tears in skin and lots of swelling.

This year I happened to discover that cbd oil was available as a treatment in my country so I gave it a shot - got a consultantation from a doc who prescribed it for me. I've been taking it since mid of May and my psoriasis has cleared up quite a bit. It's not all gone but I can wear half shirts again after almost a decade now. Might have plateaued even, but I'm happy that I'm not taking something like methotrexate. I so want to wear shorts again but it looks like I'll have to learn to manage lifestyle and stress too.

I'm planning to take a food allergy test and see what turns up. At the moment I'm trying my best to cut down on gluten and sugar - not sure if it's helping but I feel much better overall because of a better diet.

tylero05633 karma

I've tried tons of CBD treatments with no luck unfortunately but that's awesome it is helping you!! Which a great feeling to not have to hide in your own skin!

MrThoughtPolice976 karma

How long does the injection last before you need another?

I’m sorry you have to deal with this with such poor care due to insurance problems. I can relate.

tylero056914 karma

Thanks! Yeah it's incredibly frustrating, but at least its not lethal or anything! First few doses are biweekly, after that it's once per month.

Nimyron613 karma

How do you keep the house clean?

I have a very mild form of psoriasis on my scalp, but I often have to sweep my pillow because it's covered in skin flakes and I feel like my room is getting dirty much faster than for a normal person.

Good luck to you mate, I know it can drive someone crazy when the itching gets severe.

tylero056712 karma

It's a constant process of vacuuming and sweeping, lots of laundry. It's gross. I don't wanna know how many pounds of skin I shed per year lol

Nimyron132 karma

Damn I was hoping there was some magical solution to keep it all clean.

lemlurker86 karma

i have pretty bad scalp psoriasis and ive found the topical applications are a cheap(er) option thats pretty effective for me even if they are rather grim to apply

tylero056142 karma

The problem in my case is that mine is also psoriatic arthritis which the ointments don't treat :(

Clobetasol helps a ton for the skin if I apply it enough though

BrosephToDaMoon19 karma

Okay I’m really curious, would think theoretically mean that it could be easier to lose weight? Not only are you physically losing material but you body will also have to work to replace it burning more calories.

I don’t mean this with any ill intent, I’m just really curious.

tylero05657 karma

Lol I'm not sure. Overall I wouldn't recommend it as a diet though 🤣

Chickan_Good529 karma

What triggered this outbreak? I ask because we have a flare in the house and are wondering if there are common triggers that you may have encountered.

tylero056595 karma

Most likely stress (life stuff) but I'm guessing my diet didn't help either

KingQuong246 karma

I feel you, I've got pretty severe eczema that can flare up almost as bad as yours and make it so bad I can't sleep and then make me feel so self conscious I don't want to leave the house or see other people so it's really a vicious cycle of stress causing more stress. :(

I eventually got ontop of mine by ensuring I hydrate well working on myself mentally and getting uv light treatments. I hope you find something that helps you get your life back.

tylero056154 karma

Thanks, yeah skin conditions are shitty! Sorry to hear that you're dealing with one as well :(

xgti32 karma

Can you say more about your diet? I’m asking because some people I follow have had improvements by going full carnivore (essentially zero carb). Not saying you should do that, just curious about your diet comment.

tylero056102 karma

I have a terrible diet so I am not a good resource lmao, I have noticed certain foods will make it work, but I have poor self-control especially when I look like this so I figure fuck it I'm gonna eat like shit cuz I might as well enjoy something.

I will say there might be something to eliminating carbs--I've found that my skin clears up almost completely when I go back on Adderall and I'm not sure if that's because I don't eat very much/snack on carbs or if it gets rid of my psoriasis because I'm able to organize my thoughts better which make me less stressed? Haven't been able to figure that one out, but I recently moved so I need to go through the whole approval process again for that since its a controlled substance.

Foods that make mine noticeably worse are eggs, beer, bread, processed foods, etc, but I have a hard time not consuming those lol. As far as I'm aware, red meat is supposed to be a significant trigger for psoriasis, but I'm not sure the impact it has on me. I've been recommended the keto diet because I have epilepsy and its supposed to help a ton with seizures, but I haven't done it since I don't want to make my skin worse than it already is lol.

Chickan_Good22 karma

Fair. Basically same but with a tendency to pick. S'pose that keeps it around also. Do you do that?

tylero05689 karma

I'm very good about not picking except I can't stop picking/cutting away at underneath the fingernails when my nail psoriasis gets really severe since the pressure builds up and it punches the nerves/causes splinter hemorrhages for me which hurt extremely bad

SurrealEffects413 karma

Sorry if this is TMI, but is it... everywhere?

tylero056638 karma

You're good lol! Thankfully it somehow has avoided my nether-regions so far--fingers crossed it stays that way!

decadentdarkness98 karma

Have you tried removing gluten, dairy, sugar all from your diet for an extended time OP? At least 3 months.

tylero056131 karma

Although this is getting downvoted, there is evidence that removing these things from the diet significantly helps so it's pretty clear a lot of people haven't bothered to look into it. Obviously diet doesn't cure it or cause it, but it definitely affects how well-regulated it is!

I've tried cutting certain foods out--gluten and sugar are such staples of my diet I'm not sure I have it in me but I really should try it! Cutting out dairy has helped quite a bit/the inverse is true where I have flare-ups when I eat eggs

iddontevenkno88 karma

Is it painful in general? ( I have persistent pain myself)

tylero056197 karma

In general, no, but it is in specific areas.

Mine is very, very painful under my fingernails where all the nerves are and I have several splinter hemorrhages caused by it. Often times it's less painful for me to cut the fingernail off than to deal with the constant throbbing pain that makes it difficult to pick things up or perform regular tasks with my hands, but that's definitely an unfortunate trade off since exposed nerves on fingernail beds aren't exactly my idea of fun either.

As far as elsewhere, its not usually too painful since I am very good at not picking at it, but sometimes it gets bad. The worst pain from all of this is from the psoriatic arthritis which fucked over all my joints and makes me feel like I'm 80 years old lol

dantheman5289433 karma

I feel your pain man, to a lesser extent for myself, I've lived with moderate psoriasis for most of my life, my father however has a much more severe case and has experienced much of the struggle you've mentioned, in his life.

I remember in high school it was particularly rough for me, people can be pretty cruel, especially in their teens, and when people who were just genuinely curious would bring it up it felt just as bad because my self esteem had already been sufficiently crushed.

One thing people, at least my experience, seem to not realize is that yes, psoriasis certainly can be painful. When you have a flare up and it gets dry, it's like having chapped lips but in multiple places across your body, but it is manageable. There's good treatments out there, and further research into autoimmune related conditions is moving forward.

Anyways, I'd like to ask, what age were you when started to see symptoms? Did the Psoriasis and Psoriatic Arthritis emerge at the same time, or did you notice symptoms of one or the other first?

tylero05635 karma

Sorry to hear that, yeah its tough! I didn't experience any symptoms until I was around 23 so after college my dating life kinda disappeared unfortunately. And yes I first noticed a small spot on my big toe that looked like a tiny scab that didn't go away, and I got another one on my arm that got to be about the size of a quarter and so I went to the derm and got a biopsy. For a while after I was diagnosed I didn't have it anywhere until I got it on my scalp, then my arms, legs, chest, etc.

The PSA symptoms didn't start until several years later, after I had full skin coverage.

N_Lotus20 karma

Has it become worse over time? I'm in my mid twenties and over the last 10 years I've had more flaky skin like this spread around my face. First only around my nose, now half my forehead, eyebrows, and other patches. Most annoying place is the eyelids

tylero05630 karma

Eyelids are super shitty! I hate it when I'm looking down when wearing my glasses and the skin flakes off from my eyelids and sticks to my lenses too. And yeah it seems to come back worse each time for me

SCWthrowaway10954 karma

How long have you had this? How was life before it came about?

tylero05614 karma

About 8 years, life was great before it came about! Now I have become a recluse unfortunately

Abyoung97-1 karma

Are you the guy from tik tok?

tylero0562 karma

Nah I don't have TikTok

GreenApocalypse-23 karma

What was the upside-down world like?

tylero0568 karma

Lol nice one, don't worry I'm not mad