Stelara - Kat's journey

[Kat]

I am using Enstillar now behind and in my ears also on the odd patch that the Stelara is not working on and I am almost clear. Could not shift it especially around the ears but now it's great.

I have Taclonex which helped quite a bit as I was waiting on the stelara approval. I didn't use it after starting stelara because I didn't know if I should, at my appointment the nurse said use it as needed with the stelara, but the doctor said not to use the Taclonex any longer as I don't need it.

Hmm, maybe I'll try them together to see if it can push me past this point I seem to be stuck at. I may wait till November (my next injection) and see where I am then.

Thanks Dave, you've given me something to think about

[Kat]

Had a visit with the dermatologist last week.

I feel like I'm at a standstill. My scalp is still itchy and I have ... I'm not sure scaling is the right description even though that's what it is but more dry skin around the ear areas that flake off if I scratch (but small scales) also red patches in areas still. MUCH improved but of course I'd love to be totally clear so I asked the derm if she thought that would happen (I've only had 4 injections of Stelara, next one is in November) and she said no, she doesn't think I'll get totally clear on Stelara. She said Stelara is effective and has been around for a long time but that other biologics give better chances for getting 100% clear in her opinion. (Ok so why put me on Stelara and not one of the others ones? Yeah, I don't know I didn't ask)

She now recommends I switch to either Cosentyx or Tremfya. She said if I had any history with Crohn's disease or IBS (Irritable Bowel Syndrome) that Cosentyx is not the right choice as it will make it worse. I was tested a couple of years ago for Crohn's disease and it was determined that I didn't have it but since I had some signs pointing to Crohn's at the time, it makes me wonder if I should be leery of Cosentyx for me. ANYWAY.. I'm getting off topic.

I'm not totally sure what to do. The rheumatologist at my visit a few months back said it can take up to a year before knowing how well the Stelara is working for me. I started Stelara in January of this year. But if I could get the rest of this cleared up, I'm certainly open to trying something else.

I'll be checking out other threads in the next few weeks as I try to get better informed. That's what makes being here so great!!! Not just about getting the facts of the different treatments, but getting the personal experiences of others who are on the treatments is priceless!

[Fred]

Cosentyx indeed could be better Kat. But for me although it's put the psoriatic arthritis into remission which is what I want, it's not as good as Stelara for the psoriasis. I have been almost completely clear on both, but neither has lasted that long. I think you will struggle to get 100% clear whatever you take, even if you do a flare-up could still happen.

Coesnty and Taltz are much the same, but have different sided effects. But we are all different and I have never experienced the diarrhoea or stomach pain that is listed and that some have said they have experienced. Also some have said the fungal infection with Taltz has been a problem, yet others haven't.

I have not used Tremfya as it's not available here yet, but it does have a different target to Cosentyx and Taltz and is closer to Stelara.

Remember once you change you are reducing your options as they rarely like going backwards. Personally if  I were you I would stay on Stelara a little longer, but that has to be your choice.

More on the Bio's for comparison here: Biological Treatments For Psoriasis

[D Foster]

I am sorry that it's not working so well for you Kat , I have had great results from Stelara both for p and PsA though I did not realise how good it was acting on the PsA until they made a mess of a delivery and it was week 15 by the time I got back on it again by which time the PsA was really playing up. They have put me on 10 weeks instead of 12 now or I could have the option of Cosentyx so I will be interested to see how you get on and which way you decide to go, all the best and I hope that the Stelara starts to work a little better for you.

[Turnedlight]

Sorry to hear it’s not working as well as you hoped, I don’t think your derm could have known exactly what would happen - I was totally clear on it for a while so I guess it just depends on the individual.
It may be worth sticking with it a little longer, if it’s made a big improvement. I’d probably follow the derms advice on it

[Caroline]

Well Kat, I am a bit with Fred and a bit not. It is known that people react differently on Cosentyx. While it is mostly an IL-17 inhibitor, which seems to be the Psoriactic Arthritis interleukins, there still are many people for whom it seems to work excellently for the Psoriasis.

The point I am with Fred, is that at least Stelara is in a way working, It is what you have, you don’t know what you are gonna have when switching to Cosentyx. As far as I know is that when you stop a treatment is can be very difficult to restart is, as your body may have formed anti-bodies on it. So stopping Stelara is really stopping Stelara, if you understand what I mean.

So I guess it needs a lot of self inspection to determine on how you are really feeling about the remnant Psoriasis, how bad is it? Or is it reasonably liveable?
Difficult for you, take your time fo it.

[Kat]

Thanks for the replies.

I will definitely have to think on this, I actually need to reschedule a visit with my rheumatologist so will probably wait until I can discuss it with him at least. I think I've decided to go ahead and stay with Stelara for my November injection and that gives me plenty of time to look into things.

You all make excellent points.

It's not that I'm dissatisfied with Stelara, the flare up at the end of last year was a *$!@ (take your pick on wording as long as it means bad) The topical (Taclonex) actually helped clear a lot of it up before I even started Stelara. I think I was hoping for better results overall. I am tired of the constant scalp itching. Tired of not pulling my hair up in the hot weather due to red patches. And, I know I am lucky that it's not worse so sorry for the complaining. Many of you have it so much worse than I ever have.

But I think I'm comfortable with the idea of not making a quick decision here. Better to be stable where I am than to go backwards for sure! Plus, I have time to really look it over. I think I would have to talk to my primary care physician before trying Costenyx (due to stomach issues) and get his input. My next appointment with him isn't until February unless I want to make an appointment before then. I know next to nothing about Tremfya. They gave me brochures to read up on but I know I'll get more information here

Thanks again I have much thinking to do on it. Still have pictures to post but don't have them uploaded yet. Soon, I hope.

[Fred]

sorry for the complaining.  

You know you have no need to apologise for speaking out on Psoriasis Club Kat.

[Kat]

sorry for the complaining.  

You know you have no need to apologise for speaking out on Psoriasis Club Kat.  

I know Fred and thanks!!

I do try to be a "count your blessings" type of person, but everyone has their days of just getting fed up with something. I know that everyone here understands that

[Fred]

sorry for the complaining.  

You know you have no need to apologise for speaking out on Psoriasis Club Kat.  

I know Fred and thanks!!

I do try to be a "count your blessings" type of person, but everyone has their days of just getting fed up with something.  I know that everyone here understands that