Cosentyx - Kat's journey

[Kat]

I think it looks better too.

Can't see any spuds growing so you must be keeping them clean  

[D Foster]

Looks much better , just hope that it continues.

[Freckles22]

I hope you see more improvements Kat, I have had my five loading doses of cosentyx now and have seen a massive improvement in my skin. Scalp is completely clear which is amazing and also clear on my body. Slower to clear on my hands which is a pain ( literally....they really hurt!) 

I have the cold symptoms, tickley cough and sore throat etc but they seem to be wearing off a bit. 

I’m hoping the skin stays clear now I have to wait a month before the next dose. Bit nervous about that , seems a long time!

[Kat]

Thanks, we'll see how it continues

@Freckles22 - Glad to hear that it's working so well for you! I actually was glad to go to every 4 weeks but I can see where you are a bit nervous. Maybe your cold symptoms will get a bit less with the injections now being further apart. Looking forward to hearing how it goes!!

[Kat]

So dermatologist appointment today....

She wants to take me off Cosentyx as she says the psoriasis should be better by now.  Her recommendations are Ilumya or Skyrizi, both relatively new I think.  Or she said we can go backwards and try a TNF inhibitor but due to more side effects, she doesn't want to do that.  

However, since the rheumatologist wanted me on Cosentyx, she wants me to discuss it with him first.  She is not sure if either Ilumya or Skyrizi works well for psoriatic arthritis (I reminded her that as far as I know, I do not have a psoriatic arthritis diagnosis, only that I am showing early signs but she said well, better to try to nip that in the bud now and to discuss it with my rheumatologist and let her know what he says and we'll go from there)

So it looks like my Cosentyx journey is coming to an end......  I stopped by my rheumatologist since he is only a few doors away from my dermatologist and gave the receptionist the information.  They are suppose to call me back - HOPEFULLY soon!  Time to research Ilumya and Skyrizi......

Note: I like that Ilumya is only injections per year. I like that schedule best! Hoping the rheumatologist is on board for one of these though.

[Caroline]

Kat see my answer on RE: Skyrizi gets FDA approval for treating psoriasis,
All chance that both will work better for your Psoriasis.
But ... they will work less for Psoriatic Arthritis, so what do you want? Change and wait if the Psoriatic Arthritis really sets through?
It can be worth it. You might react good to one of the new medications.
But i assure you, you don’t want Psoriatic Arthritis. I think Fred will agree with me... (yesssss )

It is a bit of a gamble, hard to suggest what you should do. You can always go back to Cosentyx.

[jiml]

Yes I agree the ilumya could be better for you psoriasis as it targets different cells so could be an advantage
However unless things have changed the injections are every 12 weeks
If you get skyrizi it will be interesting to hear how that works as it's very new

[Caroline]

Yes I agree the ilumya could be better for you psoriasis as it targets  different cells so could be an advantage
However unless things have changed the injections are every 12 weeks
If you get skyrizi it will be interesting to hear how that works as it's very new

I heard is also just has been released in the Netherlands.

[Kat]

Kat see my answer on RE: Skyrizi gets FDA approval for treating psoriasis,
All chance that both will work better for your Psoriasis.
But ... they will work less for Psoriatic Arthritis, so what do you want?  Change and wait if the Psoriatic Arthritis really sets through?
It can be worth it. You might react good to one of the new medications.
But i assure you, you don’t want Psoriatic Arthritis.     I think Fred will agree with me... (yesssss )

It is a bit of a gamble, hard to suggest what you should do. You can always go back to Cosentyx.

Yeah, not sure what to do honestly. I would love to not have an itchy scalp for a change and wear darker shirts again when I go somewhere (and not look like I have a bad case of dandruff) BUT... I already suffer from arthritis and know how it feels I do NOT want to take chances that things start to go downhill as I already have mobility problems! My ankles have definitely felt better although still stiff they "warm up" a bit quicker than they used to. Granted right now I'm having knee issues again which isn't helping, but that's osteo. And shoulder issues... but that's ... well I don't know what that is, I've had problems with them for quite a few years now. And lower back... it's really hard to know what is wearing out with age and what is a medical issue honestly!! I'm slowly falling apart I think. Anyway, back on topic.... I'll just have to see what the rheumatologist recommends doing. Oddly enough I don't think he will be surprised as when we were walking out of the exam room a couple weeks back he told me that if the dermatologist wanted to take me off Cosentyx to let him know as he had other drugs available. That's one of the reasons the dermatologist is holding off, waiting for me to talk to him about it first like I did when she recommended Tremfya or Costenyx. She said if he wants to leave me on Cosentyx we could give it another couple of months but she really wants to try to get my psoriasis under control. I do like that she asked for my opinion and if I wanted to try something new. Since I wasn't really expecting that question quite yet (I thought she'd want to wait a bit longer) I just asked her what she would do. But I do like that she is willing to listen to what I want. And I like the interest my rheumatologist takes in things and that both doctors will take in to account what the other one thinks. Now if only they can fix me......

[JohnB]

Shame the Cosentyx didn't work it's magic for you Kat.
Are they off loading you from it straight away before they have decided what you are going to go on next? It sounds like a bit of an in limbo moment 

At least you get to be our guinea pig for this new stuff and we can get a first hand experience of it.