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Psoriasis-argh!!!!

(18 Posts)

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runwithme Fri 24-May-19 17:44:41

Every year I go through this. Itchy, scabby psoriasis all over my body. It stings when I'm in the shower, flakes all the time and is horrid. I want to get my arms and legs out as the sun makes it better but it's disgusting to look at. My scalp is no better, and it's slowly creeping from my hairline to my face. I've got an interview on Thursday and they are going to just be fixated on the psoriasis and not me!
It's horrid. I'm disgusted with myself. I've lathered on aveeno and coconut oil but nothing works. I've tried all the creams from the gp and nothing has worked so I don't want to go back, unless there are any new treatments.

Can anyone help? The itching and flaking is relentless sad

OP’s posts: |
JoMumsnet (MNHQ) Fri 24-May-19 19:15:03

Hi OP, sorry you're going through a tough time with this. flowers

Do you want us to move this thread over to our General Health topic? We're sure there are MNers that will have some advice for you.

runwithme Fri 24-May-19 19:22:35

Yes please, that might be better. Thank you MNHQ

OP’s posts: |
JoMumsnet (MNHQ) Fri 24-May-19 19:28:15

runwithme

Yes please, that might be better. Thank you MNHQ

No problem, we're moving it over now. Best of luck with the interview smile

NaturalBornWoman Fri 24-May-19 19:28:56

Have you had a referral to a dermatologist? There are better treatments and you need a specialist to access them. Please go back, you deserve to have proper treatment and it's shit but you have to persist. Emphasise how uncomfortable it is and how it's impacting on your life, like feeling you have to cover up etc.

freshstartnewme Fri 24-May-19 19:33:25

Please go back to the GP, they might be able to offer an alternative but if they can't you can ask to be referred to the dermatologist.

Catquest1 Fri 24-May-19 19:36:43

You need a dermatology opinion. The treatments available these days are so much better than when i was diagnosed 30 years ago. I have severe chronic psoriasis that covers everywhere.

Biologics have changed my life. Literally changed my life. Im not psosriasis free but my word it is so much more manageable than even 5 years ago

myrtleWilson Fri 24-May-19 19:49:09

Definitely try for a dermatologist referral and UV therapy... it works a treat - but I'll tell you my story.

Rocked up at hospital for UV therapy.. directed into a side cubicle to take off all my clothes, put on a gown then come into the main room. Once in the room I had to de-robe and be assessed. Bit weird (British obvs) but then they assessed what "blast' I needed.

Entered into something akin to an upright tanning bed/Dr Who set... Had to stand butt naked and put my arms into straps hanging from ceiling.

Had a short blast and was sent on my way.

My treatment was twice a week and the blast I got each week increased a little bit - at its most it was a couple of minutes I think.

Now, I tan easily.

On about treatment 10, the nurses noticed my tan developing. Particularly on my face where (at that time) I had no psoriasis.

"oh" they say "we need to protect your face". "Damn" I think "I was enjoying my NHS tan".

Off they pop and return with what looks like a rectangle of flexible perspex. "We'll make a mask for your face so it doesn't get any more UV rays" they say.

Like odd party balloon shapers they start about fixing the flexible perspex. I, in my naivety, expect a welders type mask.

No, I am handed what can only be described as a mouse head mask complete with pointy nose

I place perspex mouse head mask over mine, enter the tanning cubicle, stand, as always, legs akimbo and hands in stirrups above my head and wonder whether the NHS is running some sort of niche porn channel as a means to bolster their funding grin grin

In good news though my psoriasis disappeared.. I still live in fear of my naked mouse masked body appearing on the internet.

But seriously, do try to get a dermatology appt (but run for the hills if you hear perspex being flexed)

runwithme Fri 24-May-19 20:29:24

Thanks all! I forgot to mention, I had UV treatment years ago, and it was fantastic but a) it took ages to get, and b) it was a very slow process. From memory, the first week was a matter of seconds, and then each week it increased another 4 or 5 seconds. I definitely didn't wear a kinky mouse mask as I had a sore nose... Now there's a sentence I never thought I'd type...

My doctors are incredibly shit and over the years have been prescribing the same stuff that I've always used. Admittedly I haven't been in 3 or 4 years because its the same stuff- dovobet, alphosyl, polytar. I will give them another go and see what they say. Referrals to anything here takes ages so need a quick fix.

Thanks for all of your replies x

OP’s posts: |
freshstartnewme Fri 24-May-19 20:41:53

dovobet, alphosyl, polytar.

I use Dermovate (ointment and cream depending on area) it does clear it if I use it continuously every night but it doesn't stay away when I stop using

myrtleWilson Fri 24-May-19 20:41:57

Believe me runwithme I never imagined I'd be sharing my kinky mouse nose stories on the internet but here we are grin

Good luck!

Hiphopopotamous Fri 24-May-19 23:04:53

Ask for Enstilar foam, it's easier-to-use dovobet basically. All my psoriasis patients love it.

Northernlurker Fri 24-May-19 23:12:37

Dd2 has enstilar and methotrexate, pretty good control.

DanaBarrett Sat 25-May-19 00:41:07

My life has totally changed since I started on biological (stelara) I’m a completely different person, it’s wonderful. There are new treatments coming online all the time at the moment, please try and get referred, my clinic has been very supportive. Make sure both your PASI and your DLQI are recorded, as these should inform your treatment speed, as well as the options available.

I’ve also learned how to say Katharine treatment doesn’t suit me’, which has really helped x

DanaBarrett Sat 25-May-19 00:41:53

* ‘that treatment doesn’t suit me’
Sorry auto cucumber.

NaturalBornWoman Sat 25-May-19 06:47:04

Ask for Enstilar foam, it's easier-to-use dovobet basically. All my psoriasis patients love it.

The dermatologist just gave me this whilst I'm getting ready to go on biologics, and I must say it's the best topical treatment I've ever had. My psoriasis is reasonably well controlled on methotrexate, but my arthritis isn't. It's easier for the dermatologist to prescribe biologics than the rheumatologist apparently so that's the route we are going down. It's definitely worth exploring.

UV made mine worse. You have to find what works for you.

runwithme Sat 25-May-19 07:50:40

You guys are great- I've never heard of most of these. Going to see gp next week and ask for these and a referral. Thanks so much x

OP’s posts: |
Catquest1 Sun 26-May-19 15:16:48

I had loads of uv treatment both as a teenager and in my early 20s - worked really well but it just came back when the treatnent stopped. After several very dodgy moles being removed its a treatment thats off the table for me.

There probably arent many treatments i havent tried grin methotraxte, ciclosporin (had 2 pregancies whilst taking this) biologics - entercept gave me massive welts at injection sites, humira did bugger all but Stelara has been fab. I use the foam mentioned above for my break through patches - its good stuff.

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