Hello to All

[thingimijig]

Hi, My name is Stephen.

    I came across your site looking for information about NICE and what you think may happen to the drug Otezla.

I visited my specialist on Friday after being on the drug for the past 3 months only to find out that, even though I can stay on it for the next 9 months because it was a free 12 month trial, it may be denied funds.

Has anybody else been on this drug ?

Thank you.

[Fred]

Hello Stephen  to Psoriasis Club.

We do have a few members that have tried it. But I think it is getting mixed reviews amongst users.

But yes it will be stopped in England.

Otezla gets another No from NICE

NICE says no to Otezla for psoriatic arthritis

*It is still going to be available in Scotland

[jiml]

Hi Stephen and   to the site we have a couple of members on Otezla they have not put much information on but perhaps your question may get some response

It's a shame as it is working for you that it is being withdrawn, however there are still other treatment you could go onto
Have you been on many of the biological drugs or even Fumaderm that I am on
As you have till the end of the year you can do some research here to see what is available to you
I hope you find something
Enjoy your time with us here as we are just a group of sufferers sharing experiences and I'm sure your experience will help inform others of otezla being withdrawn
We have an active off topic section for members to join in if they wish, you would be made welcome There as well

[thingimijig]

Thanks for the welcome Fred and the links.

I feel for those who have had more side effects than results.

I did get side effects in the first few weeks but stuck with it and now I get very little if any. The results of the drug are that good, for the first time in nearly 30 years I am hopeful of wearing a pair of shorts this summer.

To be taken of the drug after such great results would be devastating to say the least.

Thank you.

[Fred]

To be taken of the drug after such great results would be devastating to say the least.

Thank you.

Yes it is disappointing, but like Jim said above there are a lot of other good options.

[jiml]

Thanks for the welcome Fred and the links.

I feel for those who have had more side effects than results.

I did get side effects in the first few weeks but stuck with it and now I get very little if any. The results of the drug are that good, for the first time in nearly 30 years I am hopeful of wearing a pair of shorts this summer.

To be taken of the drug after such great results would be devastating to say the least.

Thank you.

Let's hope your dermatologist will have some ideas before the year is up about what to replace it with before the psoriasis comes back and you have to start from square one again.

Otezla was talked about a bit on this thread Anyone here on Otezla?

[Kat]

It's discouraging to find something that works and then have to go off it. But as Fred and Jim have said, there are other treatments available that work so try not to be too discouraged. This is a great place for information and members who are very helpful and willing to share information. Glad you found your way here!

[D Foster]

Hi and welcome . it's a real sod to find something that works and then you can't get it but as everyone says there are other ones available. I am on Stelara which is fantastic for P but does little really for my PsA.
Best of luck but I am sure that you will find an alternative should it come to that.

Dave

[Caroline]

Hello Stephen,

Welcome to Psoriasis Club.



Enjoy yourself with the group.

Caroline

[phil]

Hi Stephen and welcome.
that's interesting what your saying I have just
been told I can start Otezla when ever I like.
they tell me at the clinic in Guy's hospital that Otezla
results are just as good as Fumaderm.

Phil