feathers intro

[feather]

Hi everyone, just found your group whilst trawling around the internet checking up on the headlines in the press today about 'miracle cure' - otezela , its been interesting reading some of the posts regarding otezela  and for me I'll wait and see before I charge down to the doctors to see if its available and suitable for me. 

As a long term sufferer you can guess I have tried most potions and lotions but now I tend to just put up with it and make the most of the sunshine to ease it back.

Whilst I have some hefty patches on my legs, arms and strangely on my butt (difficult to get the sunshine there without being arrested) , for me the biggest problems are when my scalp flares up and when it comes up under my nails.  Its like having bamboo slivers driven in, not nice at all.

Consultant recommended  Dovobet for both which seems to help but as ever it always comes back and usually a little worse.  When its really bad over the winter periods I get out to dermalight that I had had for years

I'll keep an eye on posts and hopefully I will pick up a few ideas that may help in the future

cheers everyone

[jiml]

Hi everyone, just found your group whilst trawling around the internet checking up on the headlines in the press today about 'miracle cure' - otezela , its been interesting reading some of the posts regarding otezela  and for me I'll wait and see before I charge down to the doctors to see if its available and suitable for me. 

As a long term sufferer you can guess I have tried most potions and lotions but now I tend to just put up with it and make the most of the sunshine to ease it back.

Whilst I have some hefty patches on my legs, arms and strangely on my butt (difficult to get the sunshine there without being arrested) , for me the biggest problems are when my scalp flares up and when it comes up under my nails.  Its like having bamboo slivers driven in, not nice at all.

Consultant recommended  Dovobet for both which seems to help but as ever it always comes back and usually a little worse.  When its really bad over the winter periods I get out to dermalight that I had had for years

I'll keep an eye on posts and hopefully I will pick up a few ideas that may help in the future

cheers everyone

Hi Feather and a big   to the club....glad you found us while trawling the net, what you have found is in my opinion probably the only place you can get independent advice as the site is totally run by sufferers, for sufferers without advertising or any spam, so enjoy reading our members experiences and how they deal with the disease ..

There is a lot on here about otezla. What I will say and I'm not trying to dampen your spirit, but I think you are unlikely to get it as a first step up from creams and potions.
Dermatologists have a protocol where they have to try to control your disease starting with the least expensive drugs ( which otezla isn't)

I would suggest you go to your dermatologist and tell them that the creams are not working and it's affecting your quality of life, and relationships ( lay it on ) have some psoriasis to show if possible ....but explain it's painful and unsightly and you are feeling low

You can say you've read about otezla ....but I can see him taking a sharp intake of breath, and telling you that first we must try one of the other oral drugs, like methotrexate or acetretin .

Take what's offered is my advice but don't settle for creams and light treatment as in my opinion they just relieve the problem short term at best .

I hope you get something that works for you , and feel free to ask as many questions as you have .

We are a friendly group of sufferers who sometimes venture into the off topic section where it can be surreal

Good luck and hope to hear more from you now you have found us

Jim

[Turnedlight]

Hi there nice to meet you

[Fred]

Hello Feather to Psoriasis Club.

Otezla is now available in the UK, though like Jim said they may want you to try the other oral treatments first. But there is no harm in asking as it has now been approved after some wrangling with the NHS.

You can read more about the drug here: Otezla

*But be warned. It's not a cure, it will only control it as will all treatments.

Regards.

Fred.

[D Foster]

Hi and welcome to the club.
As everyone says you may need to go through the hoops before you get Otezla and there is nothing that will cure the dam thing.
I use Stelara which I have found is the closest thing to a "cure" for me but we are all different and what works for one does not necessarily work for someone else , I am using Enstilar which is working well on a few stubborn patches .
I hope that you get sorted .

[feather]

Thanks for the feedback everyone

[Kat]

Hi Feather and Welcome!

[Sandra]

Feather

I am on Otezla (Apremilast).

I'm afraid Jim and Fred are right, they like you to have tried other first line treatments before prescribing Otezla but no harm in asking.

I am extremely lucky, my consultant applied for this on liscence as it had not been approved by NICE 4months ago. I call this my 'wonder drug'. I had quite severe psoriasis, covering the majority of my body, except my lower back and tummy, but it had begun to appear there just before the start of my Otezla treatment. 4 months later and I am over 90% clear!

It does have side effects, the most common being nausea and diarrhoea, which initially can be horrendous, but in my case after a few weeks, it certainly settled down. Eating either before or after taking it helps lessen the nausea. Fred is right again, Otezla is not a cure, I will have to take it for life, but as yet it isn't so new they do not know what the long term side effects will be. However my quality of life has improved so much, I'm happy to be a guinea pig!

Jim is also right about speaking to your dermatologist, and explaining exactly how you feel, don't put a grave face on, tell him/her how it affects your daily life. I was encouraged to do this by Jim and others on this forum and also took with me a copy of the NICE guidelines also supplied by this forum. It was suprising the difference this made to the discussion with my consultant.

Good luck with it.

Sandra

[Sandra]

Meant, ' it is so new' and 'don't put a brave face on', hahaha one too many large glasses of wine at the end of a working day!

[River60]

is there anything new about this drug?  I was placed in a program to be accepted for it's program.  I understand it is very expensive so I don't know yet if I qualify