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come and chat to me about psoriasis

(31 Posts)
OnlyWantsOneDoesntLikeDM Mon 17-Aug-09 09:01:44

I have it, and have done for 6 years (un/luckily it's on my scalp) which means have been through cycles of it being bearable / so bad that my hair fell out

Anh way, I can't cope with it now, I am fed up and stress is making it terrible, but my GP doesn't / will not refer me to a specialist as he thinks they will give me the same creams / treatment that he has, except he has never taken any tests, merely looked at it and said "hmmmm"

I want some proper help, I want to be able to go swimming with out it burning my head - I want to go to the hairdresssers and not be reduced to tears (although my hair dresser is amazing)

My parents have offered me to go private for help - what / how do I do now?

Also, does any one else have psoriasis and want a support thread?

moanieminny Mon 17-Aug-09 11:46:10

Hi Only..

I have psoriasis - have done since I was a child. I get it in patches on ankles and elbows and sometimes it comes out on the back of my head.

I find that a Tar based shampoo helps very much with head psoriasis. TGel Original works very well and so does Tarmed from Stiefel Pharmaceuticals....

Hope this helps - I know it is hard but try not to is the open wounds that make it sting not the psoriasis as such....

MissSunny Tue 18-Aug-09 13:46:35

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MissSunny Tue 18-Aug-09 13:47:14

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GentleOtter Tue 18-Aug-09 14:00:07

Hello! I've had it since I was 14 and am 49 now. I have psoriasis on feet, hands, legs, body,arms and sometimes face.
I have tried so many creams, ointments then PUVA etc but it is stubbornly there.
Waxing helps on legs and roll on winter for thick tights.grin
Have given up caring if people stare but wish they would find a cure.
One specialist said that the sore throats I had as a child may have triggered it off ?

BitOfFun Tue 18-Aug-09 14:09:56

A sore throat triggered my last big outbreak. It is under reasonable control now, but I have to take a drug called cyclosporin which suppresses my immune system and I have a cold or similar constantly. I can't stay on it more more than a few more months as it will wreck my liver after a while. My consultant is brilliant though, and prescribed me something called for clobetasol my scalp.

IIRC you can go private for an initial consultation, and then slot back into the NHS system. The GP really should refer you though, especially if he isn't a dermatology specialist.

brightonlad Tue 18-Aug-09 14:20:10

I've had various bouts of it and got the opportunity to see a consultant dermatologist. She was wonderful and did a lot to help. There are a great number of treatments your GP can't offer you such as light therapy.
Psoriaris is a massively complex condition which can be treated in many different ways.
A GP will not know the latest treatments of the full breadth of options.

StealthBearWipesBumOnDailyMail Tue 18-Aug-09 14:30:31

I have it on my scalp and find Calcipotriol works for a while.
It cleared up completely through my last pregnancy but is back with a vengeance in this one and of course there's nothing I can do while I'm pregnant!
Never found T Gel to do any good Would love a miracle cure... have you heard about those fish that nibble away all the dead skin...

GentleOtter Tue 18-Aug-09 14:36:10

I have often wondered if there was some hormonal link as mine also vanished when pregnant (and began at puberty).
Sun and sea can help too but unfortunately we are land locked here and it has peed rain all summer.

Habbibu Tue 18-Aug-09 14:39:00

Mine definitely eases when pregnant, and was helped a lot by PUVA - but it's not really severe enough for me to justify the NHS resources! Your GP really should refer you - can you ask to see a different GP? A dermatology consultant will be much more aware of new treatments.

OnlyWantsOneDoesntLikeDM Tue 18-Aug-09 23:16:36

I started at 16, and periods didnt start til I was 15... so maybe they are linked.

Didn't clear up at all with PG - and I think it is now spreading to my joints.

I feel so utterly disheartened by my GP - he just refuses to refer me angry

Its weeping tonight and makes my head ache.

I know mine is stress related, but the sore throat thing interests me as I have lots of trouble with my throat, tonsils etc - can we have a support thread?

ImGoingToCountToThree Tue 18-Aug-09 23:26:18

On my scalp too, its great and bearable for a week or then flares up again (now for example) I can totally sympathise with you all.
If when its at it worse I dont wash my hair everyday it gets worse and is sooooooo itchy.

I had a sample taken by my GP a few weeks ago and I am waiting for the results. I also have it on my elbow and more recently has started on my forearm.

Mine started after my second child was born during a particular stressful time.

But what is upsetting me more is that my DD (5) has just started with something similar. She has been prescribed mild steroid.

ImGoingToCountToThree Tue 18-Aug-09 23:28:34

A support thread would be great!

GentleOtter Thu 20-Aug-09 08:16:00

Has anyone tried Mahonia aquifolium ?
My son and I tried the cream and shampoo for a while then ran out of it and never got round to getting more.
It seemed quite good though and the redness went away fairly quickly.
<makes note to try again>

OnlyWantsOneDoesntLikeDM Thu 20-Aug-09 08:23:58

its the hair loss I hate

StealthBearWipesBumOnDailyMail Thu 20-Aug-09 08:26:53

yes me too, I'm very self conscious ever since DH pointed out that my hair was thinning where the patches were. It's because you pick it though, isn't it - it doesn't cause hair loss in itself?

StealthBearWipesBumOnDailyMail Thu 20-Aug-09 08:27:12

will try that GO, thanks

potatofactory Thu 20-Aug-09 08:41:31

I once insisted on being referred for my eczema (have had awful bouts, ending up in hospital for weeks at a time in my twenties). This was later, and the GP was bloody stubborn and rude, saying the same as yours, that there was nothing new, and suggesting that it was a waste of NHS resources (wanker - I cried after the appointment). Anyway, he write the bloody letter in the end, and the dermatologist I saw was brilliant - knew more than the doctor by miles (there were new things to try) and my eczema has been under control ever since.

I am not in favour of doctor-bashing btw - just this one rude fart who I saw this one time!

Hulababy Thu 20-Aug-09 08:56:27

Am interested in what others have found works too.

I started with psorasis at about 14y and I am 36y now. It is mainly restricted to my scalp and I haven't had it on my hands or feet/legs for many years now.

I use TGel shampoo as, although it doesn't get rid of ti, it does seem to be one of the few shampoos that doesn't aggrevate it further.

I have tried all manner f creams and lotions and scalp preps from the doctors over the years and not yet found one that works. My doctor also has never done testing or referred me further.

I want to be able to go out in dark clothes and not have that white residue on my collar all the time, or not leave it on the backs of people's sofas and car seats, etc.

lulalullabye Thu 20-Aug-09 09:05:48

I got it at puberty and it goes away when I am pregnant. Interestingly, I suffered from tonsilitis many many times when I was younger. They say it is 50/50 hereditory so the sore throat thing might be a goer as none of my relatives have it.

Tillyscoutsmum Thu 20-Aug-09 09:13:45

I just wanted to add that my mum has suffered with it since she was a child and it has been very severe on occasions.

She has tried all sorts of treatments - including an "intensive" 10 week stay in the skin hospital where she received regular light treatments, lots of creams, lotions etc. She has also tried cyclosporin and, whilst it worked, the gamma (sp ?) levels in her liver were so high the GP told her they were the equivalent to a hardened alcoholic shock

She works for the NHS and is very conventional in most ways but someone convinced her to try a chinese herbalist. She went about 4 years ago and her psoriasis has never been better. I'm not certain on the combination of herbs etc. she takes (there are a few of them) but she has said that in almost 50 years of treatments, it has been by far the most effective

Hulababy Thu 20-Aug-09 09:14:59

Pregnancy made no difference to mine.

My mum's mum and my dad's mum both have psorasis, and my dad also sufers frm it. I am not looking forward to getting older really as for all three, but esp my dad and his mum, it got worse as they got older and went onto their elbows and legs.

My dad has it, or ezcema in his ear canals and it looks like I am following him in this already.

GentleOtter Thu 20-Aug-09 09:19:05

One prep that used to be quite good was a coal tar/ salicylic acid ointment that the pharmacist would mix <old fashioned>
A company in Ireland still make it but it is prescription only.
It is extremely messy and stinks but it worked wonders on the skin when applied at night. One slight drawback is that it could make the psoratic patches photosensitive so you had to be careful that you did not burn but celery and bergamot oil can do that too.

Earthymama Thu 20-Aug-09 09:33:41

I have psioritic arthritis and it's awful. My feet are always peeling, weeping and bleeding unless I follow a strict routine.

I try not to have the bath water too hot, (a real pain as I think good soak does my joints good, grandmother emoticon ), Then I just pat my skin and use a moisturiser like Body Shop hemp all over but NOT on inflamed skin.

Then I use Soothe It on infected areas, followed by dermovate. It's not ideal but it helps. I find Soothe it less greasy than other creams, and it soaks in more easily.

When it's not flaring up I use Soothe It anyway to try to keep it at bay. I avoid all scented products, including fabric conditioner and bath bubbles.

It's definitely linked to my emotions and my health in other areas. When I had shingles after my mother died last year, the skin was coming off with my socks!! grin

potatofactory Thu 20-Aug-09 13:05:12

I just bought that sootheit cream, thanks Earthymama! Looks good. smile

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