So I've Have given in and saw a GP and they have referred me to a dermatologist under emergency conditions (all that means is I get seen quicker)

My appointment is next Monday, so I'm planning on taking with me a few questions and points that I feel are important and what I hope to achieve from seeing a new dermatologist.

I thought might be a chance also for others to give input on what you think important questions or goals are for when you have an appointment




So please share

X

That could be good for you, it wasn't till I went in on emergency that I finally found a dermatologist I felt was listening to me. Make a point of telling him/her that psoriasis is getting you down, a few more dermatologist are starting to realise psoriasis is also affecting peoples lives.

I don't think they will offer you biological treatments or methotrexate at the moment as they are not suitable for pregnant or breast feeding.

Try keeping a diary with photo's of your progress so you can always take with you for your next appointment, I used to show my dermatologist pictures from my blog. they do keep a record of what's going on, but you have to remember they are busy people and can't remember everyone. (You may think why is he/she asking me these questions when they have my notes in front of them, but it's better to get up-to-date information from the patient) so have your notes or questions with you.

As a member of Psoriasis Club you have a personal notepad for keeping records, see here: Personal Notepad

Work on forming a good relationship with your new dermatologist and ask if you can have future appointments with him/her and not be passed around as it would get you down.

Remember it takes time to find what works, but building a good relationship with a dermatologist you can talk to is important. If you can't get on with the one you see on Monday, ask your GP to refer you to another one. After all it's your body, not theirs.

P.S I will move this thread to Psoriasis Topics as it's better suited there.

Thanks Fred

Sadly this isn't the first time I've been an emergency case

As for skin getting me down.....i think I'm going to have to write everything down as I know I will just be in tears, even if I wasn't pregnant!

As for biologics I had a derm point and shake his finger at me saying its bio's for you soon, for the past 10years I've been with a nurse specialist and as soon as I tod her I was getting married she was trying to work out when I might be planning on having children due to meds and my age!

Writing everything down can release your heart and mind very much. As soon as you have written things down, you don't have to try to remember it anymore.

Drop the word "dimethylfumarates" and tell me what he says... Allthough not suitable for you now in your pregnancy.

Caroline

Caroline, I will ask about the treatment you are on but from what I can make heads and tales of from online isthat it's something that isn't available or possibly banned in the UK?????? But I'm not to good google!

(Tue-04-09-2012, 22:13 PM)Hanna Wrote: Caroline, I will ask about the treatment you are on but from what I can make heads and tales of from online isthat it's something that isn't available or possibly banned in the UK?????? But I'm not to good google!

Would be stupid if they banned it, but not impossible. But I guess fumaderm is not banned, and that has the same basis as Psorinovo, but has certain disadvantages.
By the way it can only be ordered in the Netherlands, but as I have heard that is regularly done. There is also an English flyer on the website. You could take that with you if you go to the dermatologist.
I am just curious on what your dermatologist says. And if it is not possible, well than it is a very pity for you losing a possible working medication, because of the limited view of the doctors, which is recognizable.

I myself was visiting a reumatologist at my bad time. He, a very handsome doctor, had heard of it he said. But he was not willing to prescribe it, as this was usually not done at his department. He only wanted to give me metrotrexate and later on worse.
So I said goodbye to him and went my own way. I decided over my own body and it appears to have been the best thing I have ever done.

Good luck !
Caroline

This is what I've found on fumerderm

Link Removed

It does sound nice that only few side affects and the worst are reversible.....


Maybe it costs the NHS to much so they won't licence it????

Hi Hanna,
I took a quick look at your link. This is only one of very many and certainly not correct. For many years it is already known that dimethylfumarate is working against psoriasis. There are much more than that only two mentioned trials, that is caused by the limitations of their investigations.
The Germans are also known for their very thorough research, think only on the "reinheitsgebot" of their beer.... Hihi
So if I trust any, it will be them. Sorry for the uk research but it maybe is biased by a pre-formed opinion, who knows.

To expensive ???? Hahahahaha, it is not cheap, I pay around € 350 for three months, but that is way less that any biological treatment.
So this cannot be the hurdle, certainly not compared to my quality of life.
Also interesting is that dimethylfumarate is a body normal substance, if everybody carries it around like e.g. your blood, it cannot be patented....

The interesting thing is that the worst side effects of fumaderm, do not occur with Psorinovo. :-)

And on literature and studies there are way more links available. :


Links removed

Probably I will be kicked off the forum now by Fred, but I have at least removed the https's
......... . Unfortunate for you a number of my links is in Dutch, do you know somebody in your environment who speaks Dutch? Should be, Dutch are everywhere around the world...

Caroline

Good morning Caroline

I looked at psorinovo last night, thankfully google has a translate button so I all came through in english

€350 is ceap for three months, I could waste more than that on 'magic' lotions and potions!

As for knowing some Dutch or people who speak Dutch......I kind of do, my husbands cousins wife is Dutch, and they both live in holland!!

Well not long till appointment now and do have questions written down.

Good Morning Hanna !
If you still read this in time, much success at your visit.

Caroline