Kat's Skyrizi Journey Part 2

[mataribot]

I get the feeling that dermatologist in general favor the il23s even if they aren’t the best for their patients.

[Fred]

This forum has always been a great place that shows it's not a "one size fits all" treatment for psoriasis. 

 

[Caroline]

Do you think the dermatologist is thinking mainly about getting skin to clear (translates to success of treatment, success for doctor) and not considering the patient's quality of life? 

I hope you feel better soon, Kat.  And also hope Caroline's mother feels better soon.

Mum’s cough is mostly gone, but she still feels energyless… so have to keep an eye on her, but there is always dad around who keeps me informed.

Sometimes there is a sequence of little illnesses around and some can last long, Kat, but hoping indeed that full recovery will be close now.

[Kat]

First, when I'm wrong I try to admit it. I don't always succeed but in this case I was wrong. I had mentioned (in another thread I think) that I expected my dermatologist to not be pleased when I said I wanted to come off of Skyrizi, but actually she was okay with it.

So, since this is about the treatment, I do not feel Skyrizi helped me with my psoriasis. Also, my ankles have been hurting for a long time now and pre covid I got the "pretty sure you have psoriatic arthritis" but that does leave the door open to do I or don't I so I am not 100% certain on that one. However, the Skyrizi in no way helped the ankles either. I am currently fairly clear, but have days where the psoriasis starts to act up and then I use the topical. I use the shampoo about 3 times a week, alternating with a regular shampoo. I told the dermatologist I truly believe the shampoo and topical help but that the Skyrizi didn't. My injection was due Nov 8th and I told her I didn't order it as I wanted to discuss it first with her. She BELIEVED me!! I didn't think she would, I figured I would get the "well you're better because of the Skyrizi" but my outbreaks this past year have had nothing to do with timing of injections (as in getting worse right before one was due) nor better after an injection. She was great and said she agreed I should come off it and we'll see what happens and if the topicals are enough (however, advised me to get ankles checked out) and if I felt I needed to try another biologic there are newer and possibly more effective ones out now. So...... my journey with Skyrizi has come to an end. Oh, for information purposes I did tell her that I had been more sick this past year than usual and didn't have that with other biologics but of course I didn't know if that was from being on Skyrizi or just bad luck. She had to point out that getting older can make us more susceptible but the information part is she did say Skyrizi is more concentrated (my word I think) on the psoriasis and less of an issue for lowering the immune system (although it still does) than (some) other biologics.

[Fred]

Sounds like a good plan to stop it, not sure a topical is going to be enough though. But she listened and said get your ankles checked, and has dropped a hint there are others to try.

Not sure if Skyrizi is better than any other on the immune system, I would think it's more down to the individual myself. I've tried most of them and some are worse than others, and some work but then stop working.

Did she suggest an alternative to think about or do you have to wait for results from the ankle people or see if the topicals do work before trying another bio ?

I hope it's not psoriatic arthritis Kat but if it is then the sooner you start treating it the better.

[mataribot]

Hopefully whatever comes next in your journey produces better results than Skyrizi And I agree with Fred - If it’s PSA it’s better to get it sorted sooner than later.

[Kat]

Sounds like a good plan to stop it, not sure a topical is going to be enough though. But she listened and said get your ankles checked, and has dropped a hint there are others to try.

Not sure if Skyrizi is better than any other on the immune system, I would think it's more down to the individual myself. I've tried most of them and some are worse than others, and some work but then stop working.

Did she suggest an alternative to think about or do you have to wait for results from the ankle people or see if the topicals do work before trying another bio ?

I hope it's not psoriatic arthritis Kat but if it is then the sooner you start treating it the better.

Hopefully whatever comes next in your journey produces better results than Skyrizi And I agree with Fred - If it’s PSA it’s better to get it sorted sooner than later.

Yes I know, I've not been as proactive as I should have been on getting checked out.

She would have been open to discussing biologics then and there had I wanted. At first, I wasn't super impressed with her but she's growing on me
I elected to wait and see, and it made sense to see if I'm dealing with psoriatic arthritis (or not) before making that decision.

I went to the rheumatologist prior to covid. He was "pretty sure" but that was from an exam only if I recall so I took it as maybe. I do know my ankles hurt most of the time and more so in the morning and after sitting. They get quite stiff and I have to flex them (or walk stiffly) until they "warm up" and then the stiffness disappears, but the pain remains. But I know I have osteoarthritis in my knees. I do know it's not (or at least wasn't) rheumatoid arthritis. So my guess is that the ankles are either osteo or psoriatic or both perhaps. I will make an appointment.

[Fred]

I will make an appointment.

[Caroline]

Seen from the point of the fact that you already have psoriasis and that 30-40% of the Psoriasis sufferers will develop PsA, it seems quite logical that it is PsA. Unfortunately

[Kat]

Seen from the point of the fact that you already have psoriasis and that 30-40% of the Psoriasis sufferers will develop PsA, it seems quite logical that it is PsA. Unfortunately

Yeah, I know there's a good chance of it. But I know I need to find out for certain. No offense, but I really didn't want to join the psoriatic arthritis part of the club

I'll let you all know, when I know.