Hello from the Netherlands

[YvonS]

I've been reading on this Forum for a while now, it was Caroline who told me about this Forum, so thanks Caroline!  And now I'll introduce myself. My name is Yvon and I come from the Netherlands.

I have psoriasis since I was a child and I got physical complaints when I was 38, I am now 48 years old.
Complaints like back pain, terrible fatigue, painful knees, all my joints hurt, at least the attachments/tendons.

Hospital in and out. I got diagnoses like fibromyalgia, osteoarthritis and the worst "it must be psychological go see the psychiatrist".
Last year the pain became so bad, that I once again went to visit the general pratitioner, who wanted to send me away again, she said that it would be muscle overload. At my insistence, I was referred to the rheumatologist (the fourth), this time a rheumatologist who specializes in psoriatic arthritis.

During the first conversation he immediately confirmed my own suspicion, I also have psoriatic arthritis. He found it unimaginable that I was sent away so much in those 10 years because the signals for PsA were obvious.

Because here in the Netherlands it has to be demonstrated on the basis of redness and swelling and possibly confirmation via an ultrasound and this was all absent with me, I could only get the nsaids/painkillers.
This didn't work and I kept calling the rheumatologist, also because I got an unbearable nerve compression in my neck. Then they did an MRI of my neck and pelvis. It showed that the vertebrae were inflamed, deformities on my vertebrae and there were many spots on my pelvis and sacrum that indicated that there had been inflammation in the past.

In a week I will start with Methodextrate by injection, which I am not looking forward to. But Mtx is also the first choice in the Netherlands for treating PsA, only if that does not work well or you get too many side effects, you can switch to biologicals such as Humira. That's an insurance story here. While research here in the Netherlands indicates that MTX does not work sufficiently for PsA.

Anyway, I hope it will work, because the pain is driving me crazy. And in the meantime, I enjoy reading this Forum, to read your experiences. It's nice for me to see so much recognition, then you're not alone.

[Caroline]

Hi Yvon,

Nice to see you here. As I was the one that pointed you over here, I should also be the one to be the first to welcome you over here.

Very soon others will jump in and give you a welcome message.


You have quite a history.. wow, and indeed rheumatologists always start with MTX. Personally I kicked off from that rather quickly and I found that DMF was the solution for me.
Rheums will not prescribe that by themselves, as they think it will not work, but that is solely in their minds.
We can speak later about that.

Enjoy the forum, there is a lot of banter around, which is also nice to follow.

Cheers,
Caroline.

[jiml]

Hi Yvon and a big  to the forum its good to know you've been visiting us for a while and I'm glad Caroline told you about us.
We are a very friendly forum and all like you sufferers of this condition and we find it helps to share our experiences and realise that we don't suffer alone.

It seems you've not had the best advice from your medical system up till now. But thank goodness that you have the diagnosis.
I hope the methotrexate works for you although studies have shown it not to be the best treatment. But unfortunately they have to follow the protocol and start somewhere (which is always methotrexate) I hope it eases the pain for you quickly.

[Fred]

Hello Yvon  to Psoriasis Club.

Nice to see you deciding to post since joining us last November, you will have found by now that you will find a friendly bunch of people so dive on in and enjoy.

Yes Methotrexate is where most countries start, if you put it in the Search facility you will find a lot of information.

I wish you well with it, and don't hesitate to start a thread about your journey here Prescribed Treatments For Psoriasis it's a good way of keeping track of things and your input could help others.

Should you venture to [Group Specific] you will find I'm the only sensible one there.

Good intro by the way.

Regards.

Fred.

[YvonS]

Hi Yvon,

Nice to see you here. As I was the one that pointed you over here, I should also be the one to be the first to welcome you over here. 

Very soon others will jump in and give you a welcome message.


You have quite a history.. wow, and indeed rheumatologists always start with MTX. Personally I kicked off from that rather quickly and I found that DMF was the solution for me.
Rheums will not prescribe that by themselves, as they think it will not work, but that is solely in their minds.
We can speak later about that.

Enjoy the forum, there is a lot of banter around, which is also nice to follow.

Cheers,
Caroline.

Thank you for your warm welcome!

I had read somewhere here on the Forum that you also had to give up sports because of the PsA? I can no longer ride a motorbike myself, I can't keep my neck up in the (riding)wind, I stiffen and can no longer squeeze the levers or my pedals. That became too dangerous, so unfortunately had to stop.
Another hobby, pinstriping, is very difficult because the inflammation in my neck presses on my nerves and then I start to shiver... not so handy when you have to draw a straight line 

So next week I will have a face to face conversation with the rheumatologist, because of corona the results etc went by phone.
But when I speak to him, I want to indicate that I know that Mtx is not the most helpful medication for PsA.
And ask why did he decide to give it to me anyway? Why do I have to be on a drug for 3 months that you have no certainty about?
Now I also have Autism and I am very well aware of rules and substantiation of my stories. So I hope i can change his mind. We will see.

[YvonS]

Hi Yvon and a big  to the forum its good to know you've been visiting us for a while and I'm glad Caroline told you about us.
We are a very friendly forum and all like you sufferers of this condition and we find it helps to share our experiences and realise that we don't suffer alone.

It seems you've not had the best advice from your medical system up till now. But thank goodness that you have the diagnosis.
I hope the methotrexate works for you although studies have shown it not to be the best treatment. But unfortunately they have to follow the protocol and start somewhere (which is always methotrexate) I hope it eases the pain for you quickly.

Thanks Jiml, for youre welcome. I also hope that mtx or a biological is gonna work for me, and makes my life a litlle bit better

[YvonS]

Hello Yvon  to Psoriasis Club.

Nice to see you deciding to post since joining us last November, you will have found by now that you will find a friendly bunch of people so dive on in and enjoy.

Yes Methotrexate is where most countries start, if you put it in the Search facility you will find a lot of information.

I wish you well with it, and don't hesitate to start a thread about your journey here Prescribed Treatments For Psoriasis it's a good way of keeping track of things and your input could help others.

Should you venture to [Group Specific] you will find I'm the only sensible one there.

Good intro by the way.

Regards.

Fred.

Thank you for your welcome... perhaps i will tell my experience on this Forum, if not for me, it can help others 

[D Foster]

Hi Yvon. Welcome to the friendliest place on the internet.
You certainly have not received very good treatment from your health services.
I do hope that you have reached a turning point now , just realized though another young lady from the Netherlands

[Wooley]

Hello Yvon

Warm welcome to Psoriasis Club!

As you will have already seen, lots of very friendly, kind and knowledgeable people on here definitely.

Hoping MTX works well for you...

Wooley

[Caroline]

[
Thank you for your warm welcome!

I had read somewhere here on the Forum that you also had to give up sports because of the PsA? I can no longer ride a motorbike myself, I can't keep my neck up in the (riding)wind, I stiffen and can no longer squeeze the levers or my pedals. That became too dangerous, so unfortunately had to stop.
Another hobby, pinstriping, is very difficult because the inflammation in my neck presses on my nerves and then I start to shiver... not so handy when you have to draw a straight line 

So next week I will have a face to face conversation with the rheumatologist, because of corona the results etc went by phone.
But when I speak to him, I want to indicate that I know that Mtx is not the most helpful medication for PsA.
And ask why did he decide to give it to me anyway? Why do I have to be on a drug for 3 months that you have no certainty about?
Now I also have Autism and I am very well aware of rules and substantiation of my stories. So I hope i can change his mind. We will see.

Yes, that is correct in my (Very) Young years I was a long distance runner.  and I had to give that up, but I switched to spinning, and that works fine for me. And a lot of bicycling of course as genuine dutch 
My Psoriatic Arthritis is way less than yours, is what I can read, so I still can ride my motorcycle (again). I really think that they have let you go on with your problems far too long.

Very sad for you that can’t do your pinstriping anymore, seems to me as a nice hobby,
I wonder what your rheum will say when you tell him that you are certainly not convinced on MTX. Anyway, keep a good eye on yourself.

Do you take the three questions with you? In order to help the conversation?
1 what are my possibilities ?
2 what are the pro’s and con’s of those possibilities?
3 what does that mean in my situation?

There is also a phenomenon called “consultkaart” which contains an overview of treatments, I assume that it is also available for psa, not sure though. You can find it on the “other” site where I know you from.. 

Inconvenient that you have autism.. but hey, very many special people also did have autism.