Kat's Skyrizi Journey Part 2

[Turnedlight]

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.

I think is still early to call this, and it is really hard to know what it would be like if you weren’t taking it, ie whether it’s doing anything at all.

I’m similar in that some of them just don’t work at all, and some that do work to start with stop after not a very long time. Others have been on certain bios for years, my best is about 18 months and some of that time is when it was failing. I tried to bring this up the other day with the derm, how some people seem to go on for ages but not me. She didn’t really have anything to say - reassuring or otherwise. This is where I start to get a bit paranoid - like perhaps they are really thinking I’m just not doing it right or something.
But this is just to say you’re not alone in this seeming rejection of bios, but you may find with Skyrizi, like me, that it gets to a point where it controls the p at a manageable level.

[Fred]

Yes too early to say, also using more than one thing will not help as you won't know which is working. Yes your body will fight a bio, it should do but it can also enjoy the help it is getting.

It's early doors, hang on in there but maybe thing of stopping other treatments just to see if it can do it's stuff. I always keep a tube of diprosone handy just in case but only if needed, but I wouldn't use it too early.

[Kat]

Thanks, yes I know it's early days yet

Fred, I've been doing what you suggested as far as the topical goes. Only using when I feel things are going the wrong way and I'm getting itchy. BUT, I'm suppose to use the shampoo 2-3 times per week. It's an antifungal shampoo that helps with infection (yeast mainly) and can also help with hair loss. So I think it may be helping with the itching..... although I don't know for certain. But since I was getting worse I was open to adding the shampoo and continuing the topical as needed. It makes it confusing however because things are better, then not so much... we'll just see how it goes.

Since I've been approved for the Skyrizi (patient payment thing) through the rest of this year, my guess is that we will evaluate it at the end of this year.

[Kat]

Thanks, yes I know it's early days yet 

TL, I hope it works for me as well!

Fred, I've been doing what you suggested as far as the topical goes.  Only using when I feel things are going the wrong way and I'm getting itchy.  BUT, I'm suppose to use the shampoo 2-3 times per week.  It's an antifungal shampoo that helps with infection (yeast mainly) and can also help with hair loss.  So I think it may be helping with the itching..... although I don't know for certain.  But since I was getting worse I was open to adding the shampoo and continuing the topical as needed.  It makes it confusing however because things are better, then not so much... we'll just see  how it goes.

Since I've been approved for the Skyrizi (patient payment thing) through the rest of this year, my guess is that we will evaluate it at the end of this year.

[Kat]

I held off using the topical and shampoo for a week and things went backwards a little bit. So, since I don't want that to happen I started using the shampoo again today and going to hold off on the topical to see if the shampoo alone is helping. My next Skyrizi injection is towards the end of May. I wish she had put me on the shampoo prior to Skyrizi so I could know if it helped on it's own. But the combination of the topical, skyrizi and shampoo has helped clear things quite a bit. I am not nearly as itchy and the scalp is less red and scaly. I wish I could say it's the skyrizi but it seems to be more the shampoo. But I just don't know.

Ankles have been hurting like heck though. So no relief there at all.

[Fred]

Always difficult when using more than one treatment to know which one is working best, but if you can get it down with the shampoo or topical it could be worth slowly weaning yourself off one then the other rather than just stop.

[Forest Walker]

I'm sorry the ankles hurt.  

If you have the flexibility to move the foot, maybe the gentle motion/stretching would help the tendons?  While sitting, if you are able to point your toe and rotate or point from side to side, up and down, around, etc., would that help? 

It's really nice to have the scalp clearing a bit.  And being less itchy overall is a win, too.  

[Turnedlight]

I held off using the topical and shampoo for a week and things went backwards a little bit.  So, since I don't want that to happen I started using the shampoo again today and going to hold off on the topical to see if the shampoo alone is helping.  My next Skyrizi injection is towards the end of May.  I wish she had put me on the shampoo prior to Skyrizi so I could know if it helped on it's own.  But the combination of the topical, skyrizi and shampoo has helped clear things quite a bit.  I am not nearly as itchy and the scalp is less red and scaly.  I wish I could say it's the skyrizi but it seems to be more the shampoo.  But I just don't know. 

Ankles have been hurting like heck though.  So no relief there at all. 

My ankles still hurt while on Skyrizi too - my rheumy said Skyrizi wouldn’t do anything for it but I don’t know if it’s supposed to? In fact I have questioned whether it has been causing some of my aches and pains but even though it does mention it on the side effects sheet, they say no it couldn’t.

[Fred]

Could your ankle problems be what I had, the rheumatology fixed it with an in injection, it was a year ago now and I'm feeling it coming back a bit so will mention it again to my dermatologist next month when I see her.

I don't know what they injected, but it worked great so could be worth asking.

[mataribot]

I just go over a flare in my ankle and it lasted two weeks. It was so bad I was putting all my weight one foot and got a blister. Assuming your problem is PSA/tendon related Skyrizi should help. It’s one of the criteria listed in the phase three trials.