Kat's Skyrizi Journey Part 2

[Fred]

Sounding good Kat

I agree "less is best" always good to have something to fall back on if you need it.

Hope it keeps going the way it is for you.

[Forest Walker]

Being "comfortable and in a good place" is so much better than being "all clear" but suffering numerous side effects.  MTX got my skin clear but made me have daily nausea.  {{{{shudder}}}  You are smart and taking good care.  I'm really glad that you are comfortable and in a good place.   

[Kat]

Sounding good Kat 

I agree "less is best" always good to have something to fall back on if you need it.

Hope it keeps going the way it is for you.

Thanks, I hope so too!

[Kat]

Being "comfortable and in a good place" is so much better than being "all clear" but suffering numerous side effects.  MTX got my skin clear but made me have daily nausea.  {{{{shudder}}}  You are smart and taking good care.  I'm really glad that you are comfortable and in a good place.   

Thanks Forest.

[Trampledrosie]

Wow. It must be so insanely uncomfortable to have psoriasis in your ears. There are setups you can buy with a light for your ear and run it through your computer or tablet. My ENT suggested one for ear wax.
It’s good to hear your scalp is feeling better. Mr Rosie has really bad scales on his scalp from PRP and it drives him nuts. He says it feels like hairs are growing under his scalp and he’s constantly at it with a comb. Is that what your scalp felt like?
I don’t think you’re cynical at all. A lyric by Joan Osborne comes to mind “what if the cure is worse than the disease “. Side effects can be deadly and these drugs are very serious business as I am learning.
What a journey you’ve been on. Glad you’re more comfortable 

[mataribot]

I’m glad things are heading in the right direction. I think you made the correct decision on staying from the localized steroid injections. You get maybe a month worth of relief from them and they really thin out the skin. I would wait until an absolute emergency.

[Kat]

Wow. It must be so insanely uncomfortable to have psoriasis in your ears. There are setups you can buy with a light for your ear and run it through your computer or tablet. My ENT suggested one for ear wax.
It’s good to hear your scalp is feeling better. Mr Rosie has really bad scales on his scalp from PRP and it drives him nuts. He says it feels like hairs are growing under his scalp and he’s constantly at it with a comb. Is that what your scalp felt like?
I don’t think you’re cynical at all. A lyric by Joan Osborne comes to mind “what if the cure is worse than the disease “. Side effects can be deadly and these drugs are very serious business as I am learning.
What a journey you’ve been on. Glad you’re more comfortable 

I tell Mr Kat and the kids to think of it like having hundreds of bug bites all itching at the same time on your head. I was bad to comb through my hair constantly throughout the day but stopped as I was breaking my hair and thinning it out. Hopefully now that I'm not scratching all the time my hair will get a bit fuller again.

[Kat]

I’m glad things are heading in the right direction. I think you made the correct decision on staying from the localized steroid injections. You get maybe a month worth of relief from them and they really thin out the skin. I would wait until an absolute emergency.

Thanks! Yes, I think unless I'm really uncomfortable it makes sense to hold off on the injections.

[Kat]

Since I did an injection last night and I haven't updated here I felt I should.

Nothing to report really.  Ears had started to be a problem so I increased using the topical.  I do think the shampoo helps.  Today things are improved but with using the shampoo, topical and Skyrizi, I don't know where to put the credit.  (Ears had been a little better, today much better but I wouldn't think the injection from last night would have improved things much in only a few hours but I have noticed things get worse as I get closer to injection time when it's wearing off so...maybe it's helping?) Ankles have never improved so IF it's psoriatic arthritis then the Skyrizi isn't working for me on that for certain.  Honestly I think it might be helping and I might need ALL of them just due to the stubborness of my scalp psoriasis but I can't be certain.

I keep thinking I should lay off the shampoo and topical, but then I notice it gets worse and so it makes no sense to stop them totally. It's obvious to me the Skyrizi alone can't clear it up. Then I think maybe I don't need the Skyrizi..... but it doesn't seem like the shampoo and topical alone can do it either. But it would take totally stopping for a period of time to know for sure on any of that and I don't want to let things go back to a possible major flare. So I'm just keeping on.......

[Fred]

Can't remember how long you have been taking it Kat, but some take longer than others to get things right.

I have always said there is no point in trying two or more things at once as there is no way you will know which one is working, but I do get that it's difficult and I do sometimes use a little diprosone if I feel a little flare is coming but I do limit it and I expect the bio to do what it says on the tin.

At the end of the day we are all different and it's all about management, so you have to do what you think is best.

Good luck.