Welcome to the Psoriasis Help Organisation, otherwise known as PHO. This is a web site dedicated to helping people suffering from the Chronic Skin Disease Psoriasis. This site contains information about Treatments, Handy Tips for living with the Psoriasis and other topics. This is a privately owned site (not a charity), run and administered by psoriasis sufferers, for psoriasis sufferers.
We are not medical professionals, just enthusiastic amateurs, with a goal to provide an informative and friendly environment to learn about Psoriasis and discuss topics with others in similar situations. The primary idea for this site is to provide a discussion forum. A place where fellow Psoriasis sufferers can exchange views and advice on how to live with and treat Psoriasis.
There are many types of psoriasis including Guttate, Plaque, Pustular, Psoriatic Arthritis and Flexural Psoriasis which can affect most areas of the body including the Scalp, Genitals and Nails, both fingernails and toenails. We have some Pictures of Psoriasis which show most of the different types of psoriasis and locations on the body which it can appear. See the menu link on the left.
We also have information on many different types of treatment, Including PUVA, UVA, UVB, Biological, Systemic, Steroid and Non-Steroid based psoriasis treatments. Many of these psoriasis treatments are discussed in greater detail in the Psoriasis Help Forum.
Click on "The Forum" Link to enter the forum
Please use the forum to ask questions about Psoriasis that you would like answered, express views that you have regarding Psoriasis and discuss treatments that you have used or are interested in using. We encourage you to talk about anything that you feel may be beneficial to others and to become part of the friendly community that we have created. Psoriasis can be an isolating, depressing disease and it often helps to discuss your feelings with others that really understand. You are not alone.
Today at 02:02:32 AM by Coco179 | Views: 15 | Comments: 0
Hello everyone, it feels nice to talk to people who are in the same boat and understand the struggles with psoriasis. I've really struggled since being diagnosed with scalp psoriasis and have lost alot of self confidence, with some days not even being able to leave the house and it's so frustrating when people tell me i'm crazy and I shouldn't care about it.
I just wanted to share my story and want to know if anyone experiences the same problems and have any advice.
I randomly developed a severely dry scalp with lots of flakes just under 2 years ago and it has been hell since then. I've been to my GP numerous times, begging to be referred to a dermatologist, which they are reluctant to do. Anyway, I was told I had psoriasis, albeit not a serious form (my GP actually said to me "well, it could be worse" )
Here's a list of everything that I've tried so far (and I used them all for the amount of time as instructed): E45 Shampoo, Eucerin Shampoo, Lubriderm lotion, Head and Shoulders, Alphosyl, Naked Organic Shampoo, Johnson's Baby Shampoo, Moroccan Argan Oil Shampoo, Nizoral, Selsun Blue, Bettamousse, Betnovate, Cocois, Coconut Oil, Olive Oil, Argan Oil, Apple Cider Vinegar and numerous Scalp Conditioning Balms, Capasal.
None of these have worked past 1 day, my scalp flakes and is as dry as ever. I am currently using Capasal, it's been almost 2 weeks and I thought it was working as the flakes had reduced in size and amount and my scalp wasn't as dry. However, this weeks it's been as bad as ever.
I'm a 23 year old female with thick medium length black hair (my family thinks i'm obsessed and crazy) and I am absolutely sick to death of having to shake my hair out everytime it's washed for the flakes to fall out, and most of the time, alot remains on my scalp visibily. So sick of having to check in the mirror before work (if the sun has risen, if not i.e winter, i'm screwed) to pull out visible flakes.
Some questions I have for anyone who can help/relate:
Has anyone used Capasal and if so, how long should I give it to work, and does it?
Also, I cannot wash my hair in the shower at the same time as having a body wash because my flakes are a million times worse after, even if I used cold water. So I daily have to do them both seperately, has anyone else noticed this? (Might sound crazy but honestly it's true)
Does using cold water to wash really make a difference? (I never use hot water on my hair anymore, and it's tough in winter days)
I do have PCOS and do take the contraceptive pill, I am still convinced that developing this out of nowhere must be something to do with my hormones, but my GP says otherwise. Anyone else on the pill/suffers from PCOS developed this like I did?
Thanks very much for your help!
Yesterday at 12:27:11 PM by MaccieB | Views: 46 | Comments: 3
I've had psoriasis for 35 years now, but its only been in the last 18 months that I have pushed for some help. I went through the topical treatment stages (just to tick a box) onto light treatment this time last year and since then I've been on a journey of systemics.
Its been a long road because my kidney and liver results weren't perfect, so I had quite a few stalled starts with Methotrexate, when I did start it I was on it for just 3 months before I had to come off because of side effects.
So I've been geared up for cilco, actually got the pills downstairs, but the derm rings me up around 7pm on the day I collected them and tells me not to take them because I'm on Leflunomide (for PA) and they both have a side effect of increasing blood pressure (which is already slightly high).
So my last appointment yesterday, he did a PASI test and the other lifestyle test (can't remember what its called) and said that I don't qualify for biologics.
So my last option is Aceterin, he says if my rheumatologists says no to this then I need to go back to managing it with Dovobet!
I came out of the appointment a little blindsided as I didn't expect to go back to the stuff I've been using for the last 20 years or so!
Just thought I would come on and have a little moan to people who understand
Thanks for taking the time to read.
March 04, 2014, 11:53:58 PM by Crashed
Views: 58 | Comments: 3
OK, so its been a while since I have visited these forums, but I havebeen on Fumaderm for 2 years and 16-18 months of them I have been 100% clear on Fumadem. Then Salford Royal Hospital cancelled my routine appointment 3 times in a row, and my consultant's secretary was impossible to get hold of to get a prescription in the mean time.
I ended up ringing every day for a month before I made an official complaint to the hospital that I was going without treatment. During this month without Fumaderm my P came back on my elbows, my scalp and my inner legs and back. Once I made an official complaint I was given an appointment with my consultant within two days who upped my dose (im now on two blues 3 times a day, I was on one blue 3 times a day previously with 100% clear so double the dose now). 2 months in to the doubled dose im still getting worse not better.
I feel that it is the break in treatment that has caused this, as I was 100% clear before I went a month without, thus now I am taking higher dose with no effect. Has anyone else experienced this effect from taking a break?
I am going to Salford Royal tomorrow, but this is a maintenance clinic, which I find odd as last time I was there my P was getting worse so surely I shouldn't be maintaining anything - it should be a proactive approach to deal with it getting worse
I know Fumaderm can take a while so it may be that it works in another month or so, but what I'm really scared of is that if I do need something else that they will have to wait till im really bad again before they will prescribe it. The only systemic I've taken is fumaderm, but everything before it I have tried. All the other systemic are contraindicated in one way or another for me,
What I really want to know, is if I need to move onto a Biologic treatment, would she wait till I was covered head to toe again before giving it me, or would the fact I have been that bad before count and used? It's pretty scary for me to think about...
Pages:  2
Hello, A New Member: Sharing my story and looking for serious help by Coco179
[Today at 02:02:32 AM]
Re: sensitive to light treatment?? by turnedlight
[Yesterday at 10:41:13 PM]
Re: Come to a full stop? by MaccieB
[Yesterday at 08:49:33 PM]
Re: What alternative to Dovonex Cream?????? by P2083
[Yesterday at 06:51:37 PM]
Re: Secukinumab by kev.rev
[Yesterday at 06:51:25 PM]
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