Kat's Skyrizi Journey Part 2

[Kat]

Had a bit of a flare this past week,  Some patches on my elbows which have been clear for years. 

Been a busy time. 

Yes and a tad bit stressful so it makes sense.

I hope the stress is easing for you, Kat.  

Thanks. We went out of town and it was unexpectedly extended, it takes a bit longer for me to recover from trips than it used to. So far the doctor's office and me are playing phone tag.

[Kat]

Okay so last Sunday was week 4 and my second injection was due, but I missed it.

So, I injected on Thursday when I noticed on my calendar that I had missed it thinking it wasn't due until this next Sunday. What can I say, it's been a rough month....

Doctor appointment was this morning. So, she said things look about the same, or rather we agreed things were not much better but not really much worse either. I felt things were a bit better and then I felt things were getting worse but when you're looking for improvement you tend (well I do anyway!) to noticed small things you normally might not. So some things that were said at appointment:

Scalp psoriasis is probably the most stubborn place to have psoriasis and can be difficult to clear. Yeah I kinda knew that one already.

She offered me steroid shots in places ON MY SCALP to see if it would jump start things. I politely declined. She did say that most people tolerate them but they are on the painful side as it's a tender place (guessing she means behind ears and neck maybe as those tend to be my worse areas)

She offered laser light therapy. I told her I had it before and it didn't help, all that happened was I got burned which wasn't fun. But since it didn't work (even after continuing) I wasn't thrilled about doing it again so she said we'd hold off trying it again.

She wrote a prescription for a shampoo. She said it helps with the surface area, also I can continue the topical.

She said sometimes biologics can take awhile, specially for stubborn scalp areas so recommended I see her in 3-4 months to see if things are better then. So, back I'll go in June.

This is very similar to conversations from past biologics I've tried. Well the steroid shots was something new. I am fairly certain they would help as I was on oral steroids awhile back for something else and my psoriasis significantly improved! BUT... it also went straight back to where it is now and where I seem to be stuck at. So if the shots cleared it for good I'd be all for it, but to do them just for a short term thing ... nah. Although possibly the shots might clear it and the biologic might keep it clear so it may be something I have to try in the future if nothing else works. I'm just not crazy about steroid shots in my head for some weird reason!

[Caroline]

I surely do understand that you are not fond of that kind of shots.. certainly as the psoriasis will come back without hesitation. Then those shots are senseless to my idea.
Hopefully things like itching, what can be very annoying, remain controllable for you. For the rest it seems like continuing is the best way to go.

[Fred]

I agree with Caroline, I would say the psoriasis would come back. But having said that the steroid shots may help the Skyrizi take over ..................... Just a thought.

Bio's are funny things, I've had some work fast then fail, I've had some work slow and last a long time. I just keep using the one I'm on till it starts failing then hope there is a new one I've not tried before.

Good luck Kat, hopefully it will start working a bit better and life in general will get a bit easier.

[Forest Walker]

For nearly 10 years, I never missed taking my Humira dose.  Then a few years ago, I was forgetting.  And I'm still struggling to remember to take it.  Mr. FW is trying to help by putting reminders on his phone to remind me.  And we have a whiteboard where we make notes to each other.  I have the dates on my paper calendar, too.  And I still forget.  But I think without Mr. FW's help and the white board I would have more trouble remembering.

Just commiserating with you missing your second dose.  I hope you are not as forgetful as I am.  

I would not want the temporary relief of Prednisone tablets or steroid injections, either, seeing as it's a temporary relief.  The tablets have so many side effects.  

I know.

We need a campaign to make scalp flakes cool.     Then everyone will admire them.  And wish they had them, too.  And the itching would be seen as beautiful, graceful movement of hand on head.   

[Kat]

I do tend to forget things it seems. Not in a early signs of dementia type of way, although perhaps it is, who knows! I'm just one of those that works well on a schedule and when it's interrupted I get thrown off course. I rarely missed a weekly shot as it became an every "monday" thing... going 4 weeks or more with something and I have to have a calendar. Problem is when I don't keep up with the calendar!

And it's early into the treatment. The 4 month mark should let me know if it's working. Today is much like after the first shot... I noticed a bit of improvement the first few days after the injection and it seems a like wow maybe it's working! And right before last injection was when it was back to where I started. So based on that and on her questions I'm thinking if this stays a bit better longer or gets more than a bit better ... maybe there's still hope! And it may be after the next injection before there is a significant improvement.

Forest we already know from being here that people with psoriasis are the cool ones!

[Caroline]

[Turnedlight]

I’m terrible at remembering but Skyrizi is on my phone calendar so I’ve done ok so far. I delayed the January one on purpose because I wasn’t well. At least Skyrizi is a painless jab
I hope it does kick in for you soon, I’ve been on it a while now and I keep wondering if I’d have the same coverage of p if I just came off it. I don’t seem to get any improvement just after a jab, so if you are perhaps that’s significant.

[Kat]

I’m terrible at remembering but Skyrizi is on my phone calendar so I’ve done ok so far. I delayed the January one on purpose because I wasn’t well. At least Skyrizi is a painless jab 
I hope it does kick in for you soon, I’ve been on it a while now and I keep wondering if I’d have the same coverage of p if I just came off it. I don’t seem to get any improvement just after a jab, so if you are perhaps that’s significant.

I might be a tad too optimistic in looking for improvement. But with her asking me if I noticed any improvement immediately after the injection if that was significant in some way.

I'm not the most patient person but when it's something like this where I have no choice but to wait, well it's what I'll do. We'll see where this goes.

[Kat]

Not much to add. I'm not as itchy right now, but then I'm still using clobetasol topical as well as Ketoconazole Shampoo so it's difficult to tell what is helping with the itching. Some days I think my psoriasis is getting better just to have it go back to where it's been so I don't know honestly.

I'm honestly thinking my body either fights off biologics or becomes immune to them quickly. But no medical evidence for that, I just find it strange that I seem to get nothing from them. But it is still early so I'm not done yet.