psoriasis no more

[hopless500]

bollox, i had cause to see my gp three weeks agowith high blood pressure 195/90, i was immediatly taken off cyclosporin, within three weeks i am now absolutely covered in psoriasis again head to toe ,worse than i have ever been , absolutely fekin pissed off doesnt begin to desribe how i feel at the moment , i cant get an appointment with dermatologist untill january, dread to think what i will look like by then.
one summer out of 49 ive been able to wear shorts and short sleeves then to be like this again so soon , lifes a bitch sometimes(hmm most of the time actually), oh well, just as well its getting colder , i wont look like a total nob all covered up ( hopefully)

It's not that long to January - and hopefully they'll be able to come up with another solution for you.

 

[Levo-Lon]

Ive started to get small psoriasis flare ups on my leg.
got some cream off Dr which does seem to work in about 6 weeks of applying. Daktacort I think as its in the fridge..I have a auto imune condition, UC and need b12 jabs too...

if it gets so my 1cm2 patches get worse ill bear this inmind as ihate what I get let alone what others have to endure...

 

[roadrash]

The state of mine at the moment i wouldnt wish it on my worst enemy, ive tried every cream there is to try , ive had 3 lots of 2month narrowband uvb light treatment , tried methotrexate, the only thing that has ever shifted it was cyclosporin but as mentioned raised my blood presssure to danderous levels, gp tells me i wont be able to go bak on cyclosporin as its not compatible with bp meds.
just have to wait and see what dermatologist says in january,
at the moment i wont venture through the door, i think only someone that suffers a really bad episode of psoriasis can realize the mental effects it has on you .
i know mrs roadrash means well when she says i shouldnt bother what other people think when they see it, but its not as simple as that , self confidence goes right out the window ,I really cant explain how it feels mentaly as well as physically, on saying the same to my gp he reaches for a prescription for anti depressants, told him theres a huge difference between being depressed and really pissed off , yeah it gets me down , i would be silly to say it didnt but im not depressed. anyway, i just realized im waffling now ,but i feel better for it ,

 

[summerdays]

I really feel for you, though mine isn't anywhere near as bad, and mine is mostly in hidden locations, though you don't want to be seen scratching! I know how it can take over your mind and become something you obsess over.

Could you change the blood pressure meds or it just conflicts as psoriasis med is causing the bp change?

 

[vickster]

Certainly no expert (have touched on auto immune conditions in a work capacity), but I would think that if the standard treatments aren't effective or aren't safe/tolerated for you, perhaps you can discuss the biologic treatments with the dermatologist (like adalimumab/Humira). I'm not sure however, whether these are readily available on the NHS due to cost (they are also injectable which may be a further barrier)...NICE guidelines here (hope the link works, it's a PDF)

http://www.google.co.uk/url?sa=t&rc...aYxHEBMIvj0xXHIdU9mn6AA&bvm=bv.80642063,d.ZGU

Good luck

 

[Banjo]

I am no expert and can offer no advice but my wife sufferede terribly from psoriasis for ten years then one day for no apparent reason about 20 years ago it gradually went away and hasnt returned.

I feel for you sufferers and hope you get some relief or it goes away completely.

 

[roadrash]

@vickster, the last time i saw dermatologist he said i had two options left , cyclosporin or the injections, obviously the cyclosporin is no longer an option so it looks like the daily injections, i have no fear of needles , but the idea of injecting myself... eeuugghh... but if needs must i will just have to learn to do it , right now, i literally would do anything.
I appreciate your advice.... thank you

 

[roadrash]

@summerdays , yeah its the psoriasis meds that raised my BP.

 

[buggi]

My mum had it all her life, then when she was about 60 it just went, almost overnight. Go figure!

 

[The Brewer]

The guy I support is on Methotrexate and a coal tar solution made up at the hospital pharmacy. The methotrexate alone wasn't helping too much but the solution really is helping him, well that and trying to avoid stress.
Feel for you and hope you get relief soon

 

[Mrs M]

The state of mine at the moment i wouldnt wish it on my worst enemy, ive tried every cream there is to try , ive had 3 lots of 2month narrowband uvb light treatment , tried methotrexate, the only thing that has ever shifted it was cyclosporin but as mentioned raised my blood presssure to danderous levels, gp tells me i wont be able to go bak on cyclosporin as its not compatible with bp meds.
just have to wait and see what dermatologist says in january,
at the moment i wont venture through the door, i think only someone that suffers a really bad episode of psoriasis can realize the mental effects it has on you .
i know mrs roadrash means well when she says i shouldnt bother what other people think when they see it, but its not as simple as that , self confidence goes right out the window ,I really cant explain how it feels mentaly as well as physically, on saying the same to my gp he reaches for a prescription for anti depressants, told him theres a huge difference between being depressed and really pissed off , yeah it gets me down , i would be silly to say it didnt but im not depressed. anyway, i just realized im waffling now ,but i feel better for it ,

Sorry you are having such a crappy time of it, especially as the cyclosporine was working.
Can only imagine how peed off you must feel. Your GP should listen to you and try to be a bit more understanding methinks!
Hubby has been a bit grinchy recently and I know it's because he is embarrassed about his skin and very itchy.
He has just been given a choice of methotrexate or cyclosporine but has to wait to get x Rays and other tests so looking at January befor he can start, some progress though at least.
Easy to say but hope you can stay positive and find an alternative that helps, best wishes.

 

[roadrash]

personally the methotrexate didnt work very well for me , the cyclosporin cleared mine in about 3 weeks, thanks for your message and i hope your hubby gets the right treatment

 

[BRounsley]

Mine started when I was 18. It was one patch and steadily increased over the last 18 years.

I’m lucky in one sense that I’ve kept it at bay on my face and arms, but hips and arse are different story. Because of it on my legs a few people have wrongly thought I’ve come off my bike (I guessing that’s where the roadrash name comes from). The bit that I’m most paranoid of is on my scalp.

For me the only think that’s kinder worked was UVB light (bought off the internet) combined with Dovbet. But as soon as I stop it returned.

The thing with most of these treatments is relentless hassle of it all. I sometimes find the time applying a treatment is more life limiting than the condition itself.

I’ve always been very wary of immune suppressant stuff. The idea scares me and I’ve read that often it comes back worse when you stop.

Anyway I’m rambling, the point of the post.

My dad also suffers to a lesser amount, but recently it’s really cleared up. Interestingly they have recently moved from a hard water area (northeast) to a soft water area (Worcester). Mine stared was when I when away to Uni in Hull. You can stand a spoon up in Hull water. I live now, in Manchester, the waters pretty hard here.

So I’ve started to consider a water softener, anyone had any success with one? In typical internet style I’ve read it helps and doesn’t help.

 

[roadrash]

in my case , after stopping the immune supressant it came back worse than ever,i had previously never had it on hands or face.
recently bought a uvb lamp, im seeing some improvement but a long long way to go, hmm never given water hardness much thought but will look into it ,
good luck
RR

 

[maltloaf]

Thought I'd update after my doctor's visit on Friday.

He prescribed 2 different ointments. One for around the face and one for everywhere else. The pharmacy told me the face one isn't currently available anywhere due to manufacturing problems. I think it was eumovate but they just crossed it off the prescription and told me to go back to doc for something else. Luckily other than very slight flakey skin on my eyelids (which looks like they are just dry) and flaky patches beind both ears, I don't have it on my face at the moment so I'm not too gutted.

The other ointment is Dovonex and seems to be working nicely on the worst patches which are on my elbows, knees and lower legs. It has stopped the flaky/scaly/loose skin and I have smooth skin there now which is lovely. It's a bit discoloured (a reddy pink colour) but I'll take that over leaving flakes everywhere.

He seems to be a long way from referring me to anyone. I have to try this ointment for 3 weeks and then go back if it hasn't worked in which case he will try something else.

cheers,

malty