Protopic, facial psoriasis, general despair...

[Lelly]

Hey guys

I'm starting to sound like a broken record with this problem,  but I swear my facial psoriasis will NEVER GO AWAY! I seem to have tried everything. Just had light treatment and it pretty much cleared everywhere, apart from my face and around my ears.

My latest treatment has been 0.01 percent pro topic, which I've been applying for over 2 weeks now. Admittedly I only applied it once a day because it was so greasy, but I didn't really see any improvement so have stopped. Should I keep using it? Is it going to make it worse if I just stop? And can I change to another treatment quickly, or should there be a break between treatments?

Basically, I have had this problem for about 5 years now, and what seems to work for others never seems to work for me. Sometimes it makes me feel so down, I don't want to leave the house. Rubbish. 

Also, do any of you find that creams work better than ointments? The only thing that seems to help me is dovonex cream, and I always find ointments so greasy. I'm toying with the idea of trying calendula cream, so any thoughts re: that would be appreciated.

The worst thing about all this is all the questions it makes you ask yourself. The uncertainty of this horrible disease means that you're constantly paranoid that you're making things worse. Sorry to be so depressing, but I'm at the end of my tether!

Any advice, as always, would be great.......x

[shankly]

 i really feel for you , when i get p on my face i become reclusive 

can i ask , have you seen a derm reference cyclo , mtx etc ?

[Lelly]

Hey, I'm not sure what they are, so I'm guessing not! Just been given cream after cream, ointment after ointment. Sometimes some improvement, but only for a short while. Basically, I never know how I'm going to look when I wake up in the morn! 

[lilactime]

if you have tried all the creams and uvb ect the next step is meds . im on cyclosporine 6 weeks in and great improvement . you must see a derm and demand a med ?

[shankly]

exactly what lilactime said 

i was on cyclo for three years now on mtx it  has given me my life back.

keep pushing your doctor till you get what you need.

wishing all the very best 

[Lelly]

Hmmm, not sure...I wouldn't ever rule it out, but I'm not sure I want to be reliant on drugs that could cause side effects/make the psoriasis worse when I come off them. My psoriasis is annoying because I often get little spots (the most persistent and annoying ones on my face unfortunately), which look horrible to me but don't seem to be classed as 'that bad' by docs.

Maybe if I knew more about these drugs and could be reassured that it won't always come back worse after treatment, I'd give them a whirl....

[shankly]

there are plenty of posts on here that will give you all the info you need.

yes there are varied side effects with these meds , but with close monitoring the risks are small in comparison to getting some sort of life back.

thats my view anyway 

[juzzy]

I know what your going through. Had major plaques from my ankles to my knees both sides and both legs, thick and scaly. all over my arms and thighs and spreading.
 I had tried every cream under the sun and nothing worked. I found the clinical trial purely by accident and so glad I did. Best part is if you are on the placebo, in 3 months you are switched to the real drug. I believe I am on it as mine as cleared for the first time in 10 years!
I would head to your local dermatologist and see if they can still get you on this trial. I'm in Sydney they said the trial has already begun, but im sure they could always put more people in if its severe enough,

good luck

[lilactime]

agree with shankly . 7 weeks in now and no side effects and regular monitoring . rapid clearance happening ! and best of all piece of mind !

[Mimz]

When I was using Protopic I was advised to apply it at night, so I could put more on and let it sink in, which helped. But like you, Dovonex is the only thing that helped me at all until I was put on MTX, although it only helps stop the pain rather than actually improving my P.

I would try to explain to your derm/docs how the facial psoriasis makes you feel. It may not seem 'so bad' to them, but they don't have to live with it every day. I was very lucky that the registrar at my derm dept saw how upset I was with the P on my face and neck, so he persuaded my consultant to let me try MTX. If they hadn't, I would certainly be entirely reclusive by now. But I don't think that many people can really understand how P makes us feel, so try to tell them how much it's affecting your life.

Mimz