Kat's Skyrizi Journey Part 2

[Kat]

I think a re-visit to the rheumatologist is needed.  Maybe Fred's magic French injection substance (he did say he didn't know what was in it) would help.  

When it's worst, does the pain of bearing weight create a fall risk?  Maye a walker or a good cane would help to take some of the weight off the ankle on the really bad days.  Or a heating pad wrapped around the ankle while resting may help?

I don't think it's a big fall risk.  Yes when at it's worse I can barely walk as it causes pain.  I have a cane and tried it but you still have to put weight on that foot when walking so it doesn't help much.  At home I usually stay near the wall or furniture so if I need a second I have some support as the wall and cane serve the same purpose of just helping with balance.  But I can still just put weight on the other foot without holding on to anything or feeling like I will fall.

When it was a constant off and on, I did take cane with me (and of course didn't need) when out so I stopped with that.  I never know when it will come on.  Actually I have thought about where the pain actually is....  I have stiffness in the back of my ankle BUT the sharp pain I get is more in the front of the ankle.  It usually lasts about 5 minutes and then goes away.  I have had times when it lasts for a couple of hours and times it lasted only one step and I've had days where it's not present.

The doctor gave me a topical ointment... it's a gel for arthritis to help with pain.  However, since I never know when it will come on and the ointment can take 7 days to even start working, I didn't see the point unless I wanted to use it daily as a precaution and I'm not fond of that idea.  And honestly since it doesn't work at the time of the pain, I had forgotten I even have it.  I felt it was his way of putting a bandaide on it. Hopefully that saying translates.    If not then I meant I think he couldn't offer any suggestions so gave me an ointment so it would appear like he did something to help. 

Usually it goes away quickly so I haven't really tried icing it or heat.  Early on when I thought I had sprained it (before realizing it would go away, come back, go away) I iced it.  Since it does come and go it doesn't appear to be an injury type thing unless it is an old injury coming back to haunt me at times.  Age is funny that way. 

Inconvenient to never know what it comes. Gives an unreliable feeling.

I think Bandaide, would have the same meaning as the Dutch “een doekje voor het bloeden”, which would again translate in English to: A wipe for the bleeding.  In other words, he gives something but it is useless.

Yep, that's the same meaning.

[Kat]

Overall, scalp is definitely better.  I don't constantly itch and shed.  The worse sections, behind ears and along neck are greatly improved but I can still feel the scaly skin a bit and at times have some itching.  However, I do still use the shampoo AND topical as needed but I do feel I need the topical less (about once per week, mostly behind ears)

Now what is weird... I have increased psoriasis inside my ears.  I've had issues with my outer ear and they are doing better, but now I have psoriasis INSIDE my ears which I haven't had before.

Also about once per week each elbow takes a turn at itching.  Moisturizing and if necessary using the topical takes care of it quickly but although I have had psoriasis on both elbows before, those areas had not been a problem

Elbow:

[mataribot]

Psoriasis in the ears is horrible… I have it.

[Fred]

Could you gently put some moisturiser inside your ear canal ? No better still maybe call your dermatologist, they may have a better idea ?

Good that your scalp is getting better, if I recall that was always bad for you.

[Kat]

Could you gently put some moisturiser inside your ear canal ? No better still maybe call your dermatologist, they may have a better idea ?

Good that your scalp is getting better, if I recall that was always bad for you.

Yes, that was my bad area. Mostly behind the ears and the ears themselves (although not in canal) and the hairline along my neck. Spots over my ears and throughout scalp would take turns appearing. Definitely more comfortable these days but for now I'm still crediting the shampoo and topical as helping too. Dermatologist appointment next month so we'll see what she says.

[Kat]

Psoriasis in the ears is horrible… I have it.

Agree! It's just weird like it's moving where I can't reach it or something.

I know it doesn't work like that, it's just strange that in clearing up some that it appears in places it previously hadn't been an issue.

[Fred]

  Dermatologist appointment next month so we'll see what she says.

Yes that would be the way to go, you don't want to go shoving stuff in your ears.

[Forest Walker]

I'm so glad for you to have at least some relief and improvement.  But it doesn't seem fair that new places should be appearing.  I wonder if a higher dose of Skyrizi or more frequent dosing would help or if it's even possible for doctors to alter dosing instructions.

What does it feel like to have Psoriasis inside the canal?  I think I have it there, too.  My dermatologist doesn't have one of those devices to look inside the ear, but she prescribed a steroid ear drop that I could apply to the outer ear with Q-Tip if I didn't want to put the drops inside the ear.

[Kat]

  Dermatologist appointment next month so we'll see what she says.

Yes that would be the way to go, you don't want to go shoving stuff in your ears.

Well...... You're right, I do at times give in to the itch though. A bobby pin (aka kirby grip, I looked it up as figured it was called something else) works well, and yes I know I have to be careful and shouldn't do it at all.

I'm so glad for you to have at least some relief and improvement.  But it doesn't seem fair that new places should be appearing.  I wonder if a higher dose of Skyrizi or more frequent dosing would help or if it's even possible for doctors to alter dosing instructions.

What does it feel like to have Psoriasis inside the canal?  I think I have it there, too.  My dermatologist doesn't have one of those devices to look inside the ear, but she prescribed a steroid ear drop that I could apply to the outer ear with Q-Tip if I didn't want to put the drops inside the ear.

It feels itchy. I know, no surprise there! And for some reason tends to peel really bad just as you get close to the actual ear canal. I don't have it down deep in my ears, just around the opening and maybe a bit into it. Drives me bonkers at times though.

I don't think I want a higher dose. I've been more sick so far since starting Skyrizi than I have in the past few years. I don't know if it's just coincidental or not but I'm paying attention, or possibly paranoid.

[Kat]

Dermatologist appointment yesterday. We agree that my psoriasis is better, but I'm not totally clear. We also agree that with the shampoo, topical and biologic it's impossible to know what is working and what is not. She said she doesn't think the topical or shampoo could do it on it's own (and I get that) so she feels the Skyrizi is working. She suggested injections or laser..... I shot down both of those. I told her I did the laser and wasn't impressed. As for steroid injections in the raised plaques I felt there wasn't much doubt that it would help as when I was on steroid medication my psoriasis greatly improved, until it wore off. She said yes, I might need injections every few months and that the injections are different than taking an oral medication as far as safety goes. I told her we'd wait and see since things are going in the right direction and if I'm stuck here then I "might" try it. Right now, I'm still very skeptical.

The good news, I am not very itchy at all, a bit inside the ears and occasionally on the still raised sections of my neck. I definitely do not have the scales that I was having. I don't look like I have a case of extreme dandruff anymore so that's good. So things are better. I'm not 100% clear and like I tried telling her, I can live with where I am right now. I'm comfortable and in a good place even if it's not perfect.

I may sound a bit cynical, but I've learned most meds are a trade off and have side effects. I was on a med for my heart rhythm for example and noticed I was getting emotional easily. I started looking at side effects and it seemed that was one of them. I came off of it and felt better. Also, I have lightheadedness which gets worrisome at times, but also a side effect of some of the meds I take so who knows if it's from that or something else. I'm a less is best type of person when it comes to meds and when older it feels doctors want to load you up!

But I'm hoping my next visit with the dermatologist, things will be even better but we'll have to wait and see. I'd say it's working better for me so far than the other biologics I've tried.