So pointless

[Hanna]

YAY some success

Saw Dr Ali at the hospital, he remember me although I have never dealt with him directly, we went over previous treatments and creams etc

He then took a look at me, his first question was how on earth are you coping? Bless him I think he was a bit shocked as im now officially more than 90% affected!! (I thought I was being generous saying I was 70-80%)

He straight away ruled out any point in giving me steroid creams, which I'm very thankful of and wouldn't of used any way!

We then discussed the next steps,
my skin could clear once baby hear and settle,
or if I am coping and breast feeding I can go for more UVB but he explained his concerns as having once already this year
Or if I can't cope or it gets worse or if breast feeding doesn't work I can go straight onto cyclosporine to get it under control.
He said I could start UVB tomorrow but we both agreed that it would be a bi pointless now at this stage.

He mentioned biologics, and I explained tha I would be looking at having another child before I am 30 so not an avenue at this time, he agreed.

I also asked about the treatment Caroline is on, it is currently not licenced in the UK but some large hospitals are using it for selected patients, Eastbourne is currently discussing being able to offer it to some patients, the doc said he is more than happy to discuss the treatment with me with a view to take it once protocols are in place which will be around feb!!!

Also something that shocked me, they asked if I would minded being photographed by the hospitals medical photography unit and the pictures will be put with my records to make it easier for my psoriasis to be reviewed and monitored, so after baby is born they have some reference which I think is a massive step forward for treatments.

I have been given a number to call with an open appointment for as soon as I feel I need to go back and the treatment I get I am in control of and get to pick to some degree what I want.

This is my first dermatology appointment where I haven't left in tears feeling hopeless, in fact I actually enjoyed it and feel far more in control now and calmer knowing I have got my back ups, but fingers crossed I don't need them and things settle after baby is born!

[Fred]

Great news Hanna, but can you stop dancing as my light bulb in the basement is swinging around.

Now you have started a good relationship with him, make sure you always get to see him and him only. Photo's are a good thing, my dermatologist has some of me, and I think she reads my posts on here sometimes too. Either that or she is psychic.

Get the baby sorted first, then he can work on getting you sorted. seems like a good idea to me too.

[Caroline]

I also asked about the treatment Caroline is on, it is currently not licenced in the UK but some large hospitals are using it for selected patients, Eastbourne is currently discussing being able to offer it to some patients, the doc said he is more than happy to discuss the treatment with me with a view to take it once protocols are in place which will be around feb!!!

Hanna,
Great that you finally have really someone who listens to you !

Does almost not surprise me that it is not licenced, although not logical, because you do not need a licence. There are no patents involved.
But I guess you need a kind of admittal from the health care, who are of course a bit scary to let anything through where they might be responsible for.
You in the UK are bit more americanized (suing culture) than we are, but we are following :-( . Which does not mean of course that I don't like the english, on the contrary. But english and english-bureaucracy are very different things.
And maybe over here in the netherlands, we are more buccaneers, as you know we have a very liberal society, almost everything is possible. But we have to fight hard for our rights on privacy and self-determination. Yesterdays elections will result in another attack to them.
Anyway, with us the patient has a responsibility of his/her own. And if we explicitly want something, we more easily (less difficult) can reach that.

Remember, dimethylfumarates and dimethylfumarates are not the same! And my treatment is a specific one that is unfortunately still not common over here.
Read all about it in my thread ! :-)

[Troll]

Hi Hanna sorry I missed this I have been away. good to hear your feeling better.

[Hanna]

I also asked about the treatment Caroline is on, it is currently not licenced in the UK but some large hospitals are using it for selected patients, Eastbourne is currently discussing being able to offer it to some patients, the doc said he is more than happy to discuss the treatment with me with a view to take it once protocols are in place which will be around feb!!!

Remember, dimethylfumarates and dimethylfumarates are not the same! And my treatment is a specific one that is unfortunately still not common over here.
Read all about it in my thread ! :-)

It reads the same !!!!......predictive iPad?

[Hanna]

Hi Hanna sorry I missed this I have been away. good to hear your feeling better.

Thank you