Checking in to say hello

[Kezz]

Hi all,

I've been lurking on this site for a while now, so I finally decided to de-lurk.  This is a fantastic forum, thank you all for making it such an interesting and informative site. I've followed Caroline's topics about psorinovo and auto-vaccination, and Bill's amazing thread of how DMF has helped him.

Hmm, not sure what else to say.  Maybe the cat will let go of my tongue at some point.

Cheers,
Kerry

[jiml]

Hi all,

I've been lurking on this site for a while now, so I finally decided to de-lurk.  This is a fantastic forum, thank you all for making it such an interesting and informative site. I've followed Caroline's topics about psorinovo and auto-vaccination, and Bill's amazing thread of how DMF has helped him.

Hmm, not sure what else to say.  Maybe the cat will let go of my tongue at some point.

Cheers,
Kerry

Hi Kerry and a big   to the club, it's nice to welcome another Dutch member  I'm glad you have come in and stopped lurking ....although that is fine as well
I'm so glad you have found the site informative and interesting ..feel free to ask questions as you have probably noticed it is a very friendly site and we find it good to be able to share our experiences

Now if the cat lets go of your tongue    you could tell us about your psoriasis and how you treat it. And what effect it has had on your life ... but that is up to you what you want to share ...

Enjoy browsing the site ...you will find it free from spam or any bullying ( it's not tolerated ) you will never see advertising and won't be asked to donate ...unlike a lot of other sites ...

Nice to meet you hope to hear more from you soon......
Jim

[Turnedlight]

Hi Kerry, nice to meet you

[Caroline]

Hi Kerry,

Welcome to psoriasisclub !

Thanks for the compliments on my threads

You are from or in the Netherlands, are you thinking of following the DMF direction ? Of course this is depending on the state of your Psoriasis.

Hope you have fun, now you have de-lurked.  

Anyway, do feel at home, everyone is very kind over here.



Caroline.

[Kezz]

Hi all,

I've been lurking on this site for a while now, so I finally decided to de-lurk.  This is a fantastic forum, thank you all for making it such an interesting and informative site. I've followed Caroline's topics about psorinovo and auto-vaccination, and Bill's amazing thread of how DMF has helped him.

Hmm, not sure what else to say.  Maybe the cat will let go of my tongue at some point.

Cheers,
Kerry

Hi Kerry and a big   to the club, it's nice to welcome another Dutch member  I'm glad you have come in and stopped lurking ....although that is fine as well
I'm so glad you have found the site informative and interesting ..feel free to ask questions as you have probably noticed it is a very friendly site and we find it good to be able to share our experiences

Now if the cat lets go of your tongue    you could tell us about your psoriasis and how you treat it. And what effect it has had on your life ... but that is up to you what you want to share ...

Enjoy browsing the site ...you will find it free from spam or any bullying ( it's not tolerated ) you will never see advertising and won't be asked to donate ...unlike a lot of other sites ...

Nice to meet you hope to hear more from you soon......
Jim

Hi Jim,

Sorry it took me a while to respond, had to go to Eindhoven today. (Btw I live in NL but I'm actually an Aussie).  OK ,re treating my psoriasis:  I used to use creams when my plaque psoriasis started in my 20s because I was very self-conscious.  However, after a while I just felt like they were pretty pointless because (at least for me) my psoriasis is not extreme, although I do have it mainly on my face around my hairline.  And creams are not effective (as far as I am concerned) because they never stop my psoriasis.  After I gave up on dermatologist and their creams, I decided to just be vegan and for me this helps a lot.  There have been times when my psoriasis disappears for a time but then comes back.

The reason I'm really interested in this forum is that I am now at a point in my life where I know it's possible that I could get psoriatic arthritis, and if/when that happens I want to know what my choices are and not have a dermatologist tell me some horrible drug is my only choice.  As it is, I had an appointment with the dermo the other day and she says I definitely don't have psa yet, as she looked at my hand joints.  I just looked at her and thought..."Really? You just look at my finger joints?"  Surely there must be some scientific test like there is for RA? *sigh*  I also mentioned Psorinovo to her, but she just shut me down. I really don't understand why because people here have had success with it. Maybe someone can enlighten me?

[Caroline]

Hi all,

I've been lurking on this site for a while now, so I finally decided to de-lurk.  This is a fantastic forum, thank you all for making it such an interesting and informative site. I've followed Caroline's topics about psorinovo and auto-vaccination, and Bill's amazing thread of how DMF has helped him.

Hmm, not sure what else to say.  Maybe the cat will let go of my tongue at some point.

Cheers,
Kerry

Hi Kerry and a big   to the club, it's nice to welcome another Dutch member  I'm glad you have come in and stopped lurking ....although that is fine as well
I'm so glad you have found the site informative and interesting ..feel free to ask questions as you have probably noticed it is a very friendly site and we find it good to be able to share our experiences

Now if the cat lets go of your tongue    you could tell us about your psoriasis and how you treat it. And what effect it has had on your life ... but that is up to you what you want to share ...

Enjoy browsing the site ...you will find it free from spam or any bullying ( it's not tolerated ) you will never see advertising and won't be asked to donate ...unlike a lot of other sites ...

Nice to meet you hope to hear more from you soon......
Jim

Hi Jim,

Sorry it took me a while to respond, had to go to Eindhoven today. (Btw I live in NL but I'm actually an Aussie).  OK ,re treating my psoriasis:  I used to use creams when my plaque psoriasis started in my 20s because I was very self-conscious.  However, after a while I just felt like they were pretty pointless because (at least for me) my psoriasis is not extreme, although I do have it mainly on my face around my hairline.  And creams are not effective (as far as I am concerned) because they never stop my psoriasis.  After I gave up on dermatologist and their creams, I decided to just be vegan and for me this helps a lot.  There have been times when my psoriasis disappears for a time but then comes back.

The reason I'm really interested in this forum is that I am now at a point in my life where I know it's possible that I could get psoriatic arthritis, and if/when that happens I want to know what my choices are and not have a dermatologist tell me some horrible drug is my only choice.  As it is, I had an appointment with the dermo the other day and she says I definitely don't have psa yet, as she looked at my hand joints.  I just looked at her and thought..."Really? You just look at my finger joints?"  Surely there must be some scientific test like there is for RA? *sigh*  I also mentioned Psorinovo to her, but she just shut me down. I really don't understand why because people here have had success with it. Maybe someone can enlighten me?

Just go to another derm. If she shuts you down on the (second) best suggestion medication in the old and in the new guidelines, then you have the wrong dermatologist. There are thousands of patients treated very well by doctors with a broader mind. But it is that doctors group that is not acknowledged by the dermatologists, as they still claim that Psoriasis belongs to them as it is on the skin. But in fact it is an auto immune disease, so should belong to internal medicine.  
Still you are best off with a good dermatologist. Choose for a guy next time...  

But she is right on that there is no test....  
The best thing is to keep a good sense of the small joints in your fingers and in your feet.
When they start to hurt, that is a signal of PsA.
Also you might get an early warning if you have sore tendons, e.g. in your feet, think of an Achilles’ tendon injury or something that feels like that.
If your finger(s) start to swell because of an inflammation, then is becomes quite sure that you are getting PsA. Remember only a limited number of Psoriasis sufferers get PsA.

P.s. we will forgive you that you are not a Dutchie, because of Bill we have a very good feeling with Aussies.    

Caroline

[Kezz]

Hi Kelly,

Welcome to psoriasisclub !

Thanks for the compliments on my threads

You are from or in the Netherlands, are you thinking of following the DMF direction ? Of course this is depending on the state of your Psoriasis.

Hope you have fun, now you have de-lurked.  

Anyway, do feel at home, everyone is very kind over here.



Caroline.

Hoi Caroline,

Ja ik woon in Nederland (Noord Brabant) maar ik kom uit Australia (ben met een Nederlander getrouwd).  Ik heb iets boven net geschreven over een afspraak op donderdag met de dermataloog.  Zij is echt een leuke mevrouw, maar toen ik over Psorinovo begon heeft ze meteen NEE gezegd.  Ik snap niet warom ze zo negatief was want als ik hier al die positieve ervaringen lees is haar reactie echt raar.  Ik denk... dat zij een lijst heeft van bepaalde droge dat zij wel mach voorschrijven.

In English (don't want to be rude, soz), regarding the appointment I had with the dermatologist on Thursday.  She's a nice person and I got on well with her, but as soon as I mentioned Psorinovo, she totally shut me down with a resounding "NO". I really don't understand why she was so negative because all the threads I've read here have been quite positive about it.  My feeling is that she's got a list of drugs that she is allowed to prescribe, and Psorinovo is not on that list.  Otherwise, I can't explain her reaction.

[Caroline]

Hi Kelly,

Welcome to psoriasisclub !

Thanks for the compliments on my threads

You are from or in the Netherlands, are you thinking of following the DMF direction ? Of course this is depending on the state of your Psoriasis.

Hope you have fun, now you have de-lurked.  

Anyway, do feel at home, everyone is very kind over here.



Caroline.

Hoi Caroline,

Ja ik woon in Nederland (Noord Brabant) maar ik kom uit Australia (ben met een Nederlander getrouwd).  Ik heb iets boven net geschreven over een afspraak op donderdag met de dermataloog.  Zij is echt een leuke mevrouw, maar toen ik over Psorinovo begon heeft ze meteen NEE gezegd.  Ik snap niet warom ze zo negatief was want als ik hier al die positieve ervaringen lees is haar reactie echt raar.  Ik denk... dat zij een lijst heeft van bepaalde droge dat zij wel mach voorschrijven.

In English (don't want to be rude, soz), regarding the appointment I had with the dermatologist on Thursday.  She's a nice person and I got on well with her, but as soon as I mentioned Psorinovo, she totally shut me down with a resounding "NO". I really don't understand why she was so negative because all the threads I've read here have been quite positive about it.  My feeling is that she's got a list of drugs that she is allowed to prescribe, and Psorinovo is not on that list.  Otherwise, I can't explain her reaction.

Je Nederlands is hartstikke goed Kerry.  

Your Dutch is very good Kelly.  

As I wrote in my earlier answer, there is no need to be that rude by your derm , as it is in the guideline for dermatologists, and it has a recommendation.
She may be a nice woman, but practice just says something else.  

You can try and have her explain why the NO,  but I am sure that we will be able to break her conclusion over here or via the patientscommunity in The Netherlands.
They tend to say that it is only for heavy Psoriasis and that it does not work for PsA, but both are not true.
You can also use it with some lighter Psoriasis, it even may be better because in no way it will damage your skin, something that all creams and UVB will do. And you can use it in "light" mode, and for many many years.

It also works for PsA, because it moderates IL-17, the typical interleukin that is involved with PsA and which is the target of the known biological Cosentyx, which appears to work very good for PsA, Ask Fred.

[JohnB]

Hi Kezz and welcome to our Club.  .

Many Dermys tend to hold back on systemics until the psoriasis gets to a certain level. Often this is because many (and I know Caroline will denounce this statement   ) are not effective over protracted periods and eventually you run out of drugs. But they could also withold it for medical reasons. I have been told I can't have Fumaderm which is a UK version of DMF because I had a really serious infection years ago and they are bothered that the Fumaderm may have a detrimental effect.
What they should never do is say no without a reason. Even if it is financial. It's your body, your disease, you have a right to know.

Enjoy the forum we are all fairly tame and on the whole house trained. Ask away and we will help as we can.

[artemie]

hi Kezz, welcome =]

Also from the Netherlands, born here. A lot of dermatologists *are* describing Psorinovo in the Netherlands, so shop around, is my advice. Shopping around sucks but it's worth the effort if it works for you. I've been on it for years successfully, until stomach cramps made me stop, unfortunately. So, get a second opinion!  Good luck, and stick around here =]