Cosentyx for psoriatic arthritis Fred's journey

[Caroline]

Can’t give you any further advice. Your vitamins are ok. Jim’s advice is very good.
Go for some good nights sleep.

Don’t know any further.

But excellent that you have a protocol now on how to proceed.

[Fred]

Can’t give you any further advice. Your vitamins are ok. Jim’s advice is very good.
Go for some good nights sleep.

Don’t know any further.

But excellent that you have a protocol now on how to proceed.  

Yes I feel a little happier knowing I can still carry on with Cosentyx for now. I was a bit worried she might pull me as it's still new but she did say the only next step is Taltz so we may as well try to continue with Cosentyx.

I have also booked the nurse to come and do bloods this week.

[jiml]

Great that you haven't been pulled off Cosentyx Fred, great idea getting your GP to check it out before the next shot .....hopefully it will have gone by then ....are you using Zovirax on the sores to help prevent fresh outbreaks ?

[JohnB]

It must be a small weight of your mind, which in itself isn't a bad thing. It wouldn't have made much sense for your Dermy to pull the Cosentyx seeing as your PsA is doing so well. It will be interesting t see if the new topical is of any help.
Now the telling off. Fred you are not supposed to pull flakes off your body. My Dermy nurse would have a pink fit - she got quite animated when I described how I was putting moisturiser on, so peeling skin scales off . . . . .

[Fred]

Great that you haven't been pulled off Cosentyx Fred, great idea getting your GP to check it out before the next shot .....hopefully it will have gone by then ....are you using Zovirax on the sores to help prevent fresh outbreaks ?

I'm going to see him tomorrow, but no I only ever use Coconut Oil. Maybe he'll prescribe something.

It must be a small weight of your mind, which in itself isn't a bad thing. It wouldn't have made much sense for your Dermy to pull the Cosentyx seeing as your PsA is doing so well. It will be interesting t see if the new topical is of any help.
Now the telling off. Fred you are not supposed to pull flakes off your body. My Dermy nurse would have a pink fit - she got quite animated when I described how I was putting moisturiser on, so peeling skin scales off . . . . .

Yes it does make me feel a little better, and like you say it doesn't make sense to pull the Cosentyx. But you are supposed to report anything out of the ordinary as it's still new.

Yes I know Nurse B but it's fun.

[Fred]

Update: Been to see my dermatologist for the earlier appointment, and like me she was disappointed with the psoriasis.

The Clarelux cream had helped get the flakes off but I'm just left with red patch's all over my shins and part of my thighs. I had noticed that it seemed to get worse at around week three and this last week it is getting worse again just before my next shot.

I can't keep using the Clarelux so we have had a good chat. Taltz was an option, but we have decided to give a change to the dosing regime and stick to Cosentyx for another 6 months as it has been so good for the psoriatic arthritis. *

As from this week-end I will be switching to my two shots every 3 weeks as opposed to 4. Our thinking is that it may be all it needs to bring the psoriasis back in line whilst still keeping the benefits it has over the psoriatic arthritis.

She did mention Enstilar will soon be available in France or I could keep using the Clarelux for a little while longer but we have decided it is best to try and avoid any other treatment on top of the Cosentyx to see if the switch to 3 weeks will work.

So I'm now on two shots every three weeks and will see how it has gone in 6 months time. If I have any problems I can use a little Clarelux or Enstilar once available to help. But I'm going to stick to the shots and Coconut Oil only for as long as I can to give the new regime a fair try. (*Usual caveat, I have to report any problems.)

I'm pleased as I wanted to stay on Cosentyx as it has been so good for the psoriatic arthritis. Yes Taltz is much the same thing, but better the devil you know at the moment, and keep Taltz on the back burner.

Psoriasis Score still at 9

Psoriatic arthritis score still at 1 but would be 1/2 if I could put that.

I'm happy with the meeting and the choice, so watch this space.



*Note: I have been using Cosentyx for psoriatic arthritis and I'm very pleased with the result. Psoriasis was a second thing for me to get sorted and should I have been taking it for just psoriasis I think I would have switched to Taltz.

[Caroline]

I think your approach is sensible. Keeping Taltz in the cupboard for now may be better, as we always have to deal with the anti-bodies that may pop-up.
The only thing is that Taltz is also an IL-17A inhibitor, just like Cosentyx. It may very well work in a bit different way, but I have doubts if it would do much for your Psoriasis.

As you said yourself, and as I do agree fully, it is better to get rid of the Psoriatic Arthritis, cause that is awful.

Lets wait again and see what happens to your scores.
Good luck with the 3 weeks scheme !

[Fred]

I think your approach is sensible. Keeping Taltz in the cupboard for now may be better, as we always have to deal with the anti-bodies that may pop-up.
The only thing is that Taltz is also an IL-17A inhibitor, just like Cosentyx. It may very well work in a bit different way, but I have doubts if it would do much for your Psoriasis.

As you said yourself, and as I do agree fully, it is better to get rid of the Psoriatic Arthritis, cause that is awful.

Lets wait again and see what happens to your scores.  
Good luck with the 3 weeks scheme !

Thank you Caroline, yes I think this has to be worth a go. I had not thought of it as an option, but it did help with Stelara so I thought why not give it a try when she suggested it.  

As you know I have never felt this good with psoriatic arthritis, so let's not rock the boat yet.

[jiml]

It’s good to know your dermatologist is forward thinking and someone you can talk to about treatments. Great news she has reduced the time between shots. I really hope that is all it takes to get clearance

I look forward to the next instalment

Do they have to get clearance from the manufacturer of cosentyx before they can dabble with the dosing  ?

[Fred]

It’s good to know your dermatologist is forward thinking and someone you can talk to about treatments. Great news she has reduced the time between shots. I really hope that is all it takes to get clearance

I look forward to the next instalment

Do they have to get clearance from the manufacturer of cosentyx before they can dabble with the dosing  ?

Thank you Jim. I'm lucky that I have a very good relationship with my dermatologist and she is sometimes impressed with my knowledge of the new treatments. She's not easy to get to see as she is at the top of the list, but I have been with her a long time and she knows I don't bother her unless I'm in trouble.

No we don't have clearance from the manufacturer, and I don't know if it is something that others could try. But I'm willing to give it a try and have started another thread about it if anyone is interested: Cosentyx 3 week regime