Newbie ConLFC

[ConLFC]

Evening everyone,

I came across these forums after an epic Google session on secukinumab..  I have just finished reading angels thread on it and have decided I might want to give it a go.

Well about me.. I am 32 and was told I had exzema around three years ago.. Allot of trips to the doctor resulted in a visit to the dermo.   Within five minutes I was told I have psoriasis and that I am likely to develop psoriatic arthritis as I have some in my fingernails.  I was handed some leaflets and a prescription for dovobet gel and was told to quit smoking and drinking.  

My patch coverage is: two elbows, one knee,  one back thigh, one bum cheek.  I have a few spots on one hand and on my shins.  I also have all my nails a little pitted.  The patches on my knee and elbow were the first to appear and never disappeared since. 

I immediately quit smoking and cut down on the drink.  I have totally transformed my diet in an attempt to cleanse my insides and started regular exercise.  There are many things I have tried including a few months on a 80% 20% diet from a book I read.  (Not sure if I can mention it).   This actually helped with itching but no reduction.    Aside from this I have tried black garlic, tumeric, ginger, home made moisturisers, apple cider vinegar.. Topically and internally    One knee is still yellow from the tumeric and clinfilm wrap two weeks later. 

I always feel better when I try something.. The hour or so whilst I'm on my cure missions to get supplies at the local supermarket are the happiest I usually have.  

On Friday I'm going to the doctors to request secukinumab,  I am too fare for the uv phototherapy according to my dermo and the other stuff topically hasn't reduced or helped.  The systemic drugs that are available have scary warnings that put me off.. Basically from what I understand they scattergun the immune system and can cause liver damage etc...   So when I heard these new drugs have entered the market and have no major long term risks I feel now is the time to try. 

Apparently the doctors will only prescribe it if the other systemic treatments fail.. But logically shouldn't they prescribe the safest option?  Reading up on the il17 inhibitor they cost the U.K. Govt 1500 pounds for two shots.  So I guess it's down to financial reasons.  I am preparing for a battle with the docs and getting my facts in order before I make my case.  If anyone has any advice I would certainly appreciate it.  

Well that was nice to get off my chest.. 

I am still very new to all this so go easy on me 

Cheers 

Con

[jiml]

Hi Con and a warm   to the forum, we are a growing band of sufferers pooling our knowledge to help each other, by describing our personal experiences, and give each other support and personal advice.

You will find the forum packed with information on most prescribed treatments and the latest trial results , in fact anything you want to know is probably in here somewhere

I'm glad you found angels thread of interest and you came to discuss your thoughts with us
the search facility above will give results if you put Cosentyx in or secukinumab

We also have an active off topic section which you are welcome to join in the banter anytime you like, we make everybody welcome

Now about your thoughts on asking for Cosentyx from your doctor I think your chances are less than slim getting it (it's just my opinion) I hope they give it to you.

But I think you will need to be referred to a dermatologist at a hospital to get anything apart from creams and potions  .
If you see a dermatologist they tend to have a protocol you have to go through starting with the least expensive which is likely to be methotrexate, I have my own views on that.
If you fail on that you may get offered Acetretin or cyclosporine or if you are lucky the drug I'm on Fumaderm

Cosentyx is so new I think it very unlikely you will be offered it first.......
However you may well get lucky , I hope so
Jim

[ConLFC]

Hi Con and a warm   to the forum, we are a growing band of sufferers pooling our knowledge to help each other, by describing our personal experiences, and give each other support and personal advice.

You will find the forum packed with information on most prescribed treatments and the latest trial results , in fact anything you want to know is probably in here somewhere

I'm glad you found angels thread of interest and you came to discuss your thoughts with us
the search facility above will give results if you put Cosentyx in or secukinumab

We also have an active off topic section which you are welcome to join in the banter anytime you like, we make everybody welcome

Now about your thoughts on asking for Cosentyx from your doctor I think your chances are less than slim getting it (it's just my opinion) I hope they give it to you.

But I think you will need to be referred to a dermatologist at a hospital to get anything apart from creams and potions  .
If you see a dermatologist they tend to have a protocol you have to go through starting with the least expensive which is likely to be methotrexate, I have my own views on that.
If you fail on that you may get offered Acetretin or cyclosporine or if you are lucky the drug I'm on Fumaderm

Cosentyx is so new I think it very unlikely you will be offered it first.......
However you may well get lucky , I hope so
Jim

Thanks Jiml,  

I'll definitely check out the off topic section...  I had a feeling the doctor may send me to the dermo,  I called the docs office and requested a dermo appointment,  I don't want to waste an appointment just to get another appointment.  I was denied and called in 

Once I get to the dermo I'm hoping if I state clearly why I don't want all the other drugs and insist on cosentyx they shouldn't have much of an argument... I am aware that some docs don't enjoy being schooled but I'll try and see what happens..

My two other options are to fly back to Ireland and see the family gp or try go private through my employers medical cover.  

Whatever happens I'll eventually get it hopefully and maybe by then the other two il17 inhibitors will be on the  market to force the prices down..

[jiml]

I wish you much luck with that Con and hope you will keep an open mind about other treatments, most are very safe as long as they are monitored,

All of us on here are on one form of treatment or another, and we are all concerned about the drugs we take, but realise that as long as we are monitored we are fairly safe

Cosentyx was Only approved in June this year in the uk I think and this is an extract from the novataris website

Quote:

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The National Institute for Health and Care Excellence (NICE) has today issued a Final Appraisal Determination (FAD) recommending secukinumab for use on the NHS as an option for the treatment of adults with severe plaque psoriasis when - they have failed to respond to, are contraindicated to or cannot take standard systemic* therapies.

They are quoting the NICE guidelines which are quite clear, yes there are other drugs in the pipeline but to date new drugs coming online haven't had the effect of reducing the prices

Am I going easy enough on you    hope to see you in off topic

[Kat]

Welcome Con, glad you found your way here!

I'm in the US so don't know anything about how your system works. I hope you get to try your preferred treatment, but if not then I hope you get a treatment that works well for you.

[Caroline]

Hi Con,

Welcome to the forum.

As Jim says I doubt they will put you on biologicals immediately. But for what it is worth, try to prevent that they give you methotrexate, that is kind of chemotherapy. If possible try to jump to e.g. Fumaderm, which over here in the Netherlands on the world psoriasis day few weeks ago was mentioned as it should be the first to try. Reason is simple, much chance in working and almost non toxic. There is a lot to read on it under DMF.

Enjoy your stay here and keep us posted on how things go

Caroline

[Fred]

Hello Con   to Psoriasis Club.

They always say Tobacco and Alcohol are bad, it's rubbish in my opinion I tried giving up both and it made no difference. I did stay off the tobacco but only because it did help a bit with my breathing, but it hasn't changed anything in relation to psoriasis or psoriatic arthritis. I tried a few months without alcohol too but again it made no difference, apart from probably making it worse as life was becoming a bit boring without a smoke ir a drink. As for the diets, that's not for me as I enjoy my food to much to worry about what I eat. I eat a sensible diet as far as I'm concerned and have read some of the books but I'm a non believer that it could have a long term effect. (I appreciate you not mentioning the book by name)

Now Coesntyx (secukinumab) As the others have mentioned "You won't get it"
Three reasons why you won't get it.
#1 It's still a new drug and if they did offer you a bio it would be one of the others first.
#2 Bio treatments are only given if the psoriasis is very bad and you have failed on other treatments first.
#3 Your dermatologist will have to follow the NHS guidelines on treating you. Which you can read here: NICE issues new guidance for GPs treating psoriasis

Quote:

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first-line therapy describes traditional topical therapies (such as corticosteroids, vitamin D and vitamin D analogues, dithranol and tar preparations). Second-line therapy includes the phototherapies (broad- or narrow-band ultraviolet B light and psoralen plus UVA light [PUVA]) and systemic non-biological agents such as ciclosporin, methotrexate and acitretin. Third-line therapy refers to systemic biological therapies such as the tumour necrosis factor antagonists adalimumab, etanercept and infliximab, and the monoclonal antibody ustekinumab that targets interleukin-12 (IL-12) and IL-23.

Best bit of advise I could give you would be to work with your dermatologist and listen to them, they will follow protocol and work their way through it to try and find something that works. If you keep them on your side and do as they say, you will find later on you may find it easier to ask for something specific.

Re Ireland I think they have much the same system and a GP will not prescribe anything else than creams. If you did find a dermatologist there to prescribe an oral treatment you would still need to be monitored so I'm not sure how that would work.

If your employer is offering medical cover then I would go for that and ask if you can get private dermatology covered, if you can then you may be able to speed up the process of getting onto something you want to use.

Regards.

Fred.

[ConLFC]

Thanks guys I will definitely keep an open mind regarding the other treatments.  Fumaderm definitely sounds like something I'd be happy to start with but it seems even that I'll be lucky.  I guess I have a chip on my shoulder with the docs for getting my initial diagnosis wrong when the dermo could clearly see what it was.  But I'll let that go and start fresh.   But being me I'll definitely chance my arm for the good stuff but I'll try with a smile instead of a frown. 

Although nobody wants psoriasis it has a silver lining in my story.. Prior to my diagnosis I ate and drank what I want to my own detriment.  I was slightly over weight, lazy, and drank my fair share every weekend.  Now I'm slim, energetic, more outgoing and drink in moderation.    Although the changes in diet and exercise have not cleared me up they have definitely cheered me up.  

I will let you guys know how I get on by way of a new thread with hopeful a new thing to try. 

Thanks so much for the warm welcome 

Conor

[Fred]

I will let you guys know how I get on by way of a new thread with hopeful a new thing to try. 

Yes please don't hesitate to start a new thread about your journey. Your input could help others in the same boat, and it will give you something to look back on.

[jiml]

Im glad you are keeping an open mind Connor on the possibility of other treatments, and yes it's better to discuss matters with a dermatologist in a friendly manner, I'm sure it will get better results for you.

Good to hear about the plus side of psoriasis getting you fit , for me I don't have the will power and am letting my Fumaderm keep me clear.
How I wish there were places like this years ago when I was in a desperate state with psoriasis feeling very alone with no one to turn to .....the best thing with having psoriasis for me is this site as it gives us a chance to learn more about the disease so when we do see the dermatologist instead of believing him when he tells you to try this new cream, you can say with authority " but I know there are better treatments that will block the cells that are affecting my skin." He is more likely to prescribe something useful if you have a reasoned arguement.... But I still doubt it will be the one you want..

If you are able to get Fumaderm ( I'm not trying to put you off ) but there can be some unpleasant side effects. Which do put a lot of people off but they are short lived ( or they were for me ) and they do diminish after time

And as Fred says do start a thread to relate your journey, it will prove helpful to you, and probably others as well