Fed up

Posted Wed 21 Jun 2017 12.15 by Sheila54 (edited Wed 9 Aug 2017 11.52 by Sheila54)

I have had psoriasis since the age of 3, I am now 54. God knows how many treatments I have tried over the years, currently using dovobet but that seems to no longer be working for me anymore, waiting to see a dermatologist but have to wait at least 3 months. I'm going to the Drs today to look at getting enstilar. I've recently discovered that there is a link between psoriasis and Crohn's disease which both my children have, they are both auto-immune conditions, my children suffered so much throughout their childhood and my daughter still suffers now, there is much more to psoriasis and the effects than just a skin condition. There needs to be more awareness made and surely after all these years there needs to be more effective treatments available.

Posted Sat 24 Jun 2017 07.29 by Glackshaw@aol.com

I have psoriasis which is increasing - started on my scalp and legs but is now spreading. Is this usual? I am finding it embarrassing as I constantly have 'white shoulders' and wear boots at all times as my feet and ankles are covered.

Posted Sat 24 Jun 2017 18.21 by Bogz

Its not fair, its cruel, i too have had enough its been 7 years and on every part of me im a mess and from a few months back guttate psoriasis started to fill in any parts that were clear inbetween, specialists never listen when u tell them how miserable u are with your life, giving up

Posted Mon 3 Jul 2017 18.29 by Mig

I think Dovobet and Enstilar are the same, just one is a gel and the other is a foam spray. I got given both and the ingredients are the same. I think even made by the same company.

Posted Wed 5 Jul 2017 00.19 by Darron

@Sheila54 I agree with you that there should be more done. But there is a reason why we are constantly reminded that it only affects 3% of population. What medical professionals mean is the market for drug development is not large enough for them. Also they only cure the symptoms and very rarely cure the actual problem. It's commercially not sound to do so. I actually think the 3% is also grossly underestimated. I have suffered for 7 years and have little faith in doctors. I mean why would I want prescribed cream or tablets to stop the symptoms of a problem that even the doctors themselves openly admit to not knowing the cause of. Aren't medications meant to cure the problem rather than the symptoms? How many more sufferers like me are there that statistics don't include? You only have to see all the psoriasis groups on Facebook and how many members there are in each to realise that in fact this is potentially a bigger problem than the 3%, especially when you consider these online groups make up a very small proportion of the whole population. My heart goes out to you, knowing that you have suffered for so long. I have it on my face, it affects me greatly. I have lost my confidence and have become a recluse. I'm 46 and luckily only had this for 7 years. Before this I was a very bubbly, positive outgoing person. I battle with this every day and will find a way to over come it. Good luck and every blessing Sheila

Posted Wed 5 Jul 2017 14.36 by Clarelewis

This is to cruel. Iv had psoriasis for the last 5 years on my elbows. It's so embarrassing I hate wearing any kinds of short sleeves thro the summer is a killer.

Posted Fri 7 Jul 2017 20.21 by mappaman
I am Gary and have had this horrible condition for more than 25 years and I am still suffering now !

I know how you feel, had mine since 16, I am 46 now and it is worse than ever, really fed up now, usually its better in the summer, this year cant go out in shorts, too embarrassing and unsightly. I have decided to not use meds or creams and going back to direct sunlight and sunbeds!

Posted Thu 3 Aug 2017 06.26 by Idy
Phototherapy, methotrexate, ciclosporin and stelara afficionado

Have you tried phototherapy? You'd need to visit hospital 3 times a week for 2-3, but it got rid of all my psoriasis (except scalp) which had covered 70% of my body. Four years later and it's now back to about 40%, so I'm heading straight for phototherapy again. Ointments, ciclosporin and methotrexate didn't help me much.

Posted Fri 4 Aug 2017 13.02 by Lel

I have psorisis on the soles of my feet and was diagnosed in 2011. I cannot believe the impact it has on my life. My legs ache like hell sometimes. Feels as if I'm standing in a fire pit- all the way to up to my knees. So bloody achey. There should definitely should be more awareness and research about this condition.

Posted Fri 4 Aug 2017 20.47 by xloreleix - 33 from Pinner
Hi im 26 years old and suffered from psoriasis since i was 16. Currently enduring a battle with PPP and about to try acitretin

Its nice to be able to speak to people in the same position though, i have miny breakdowns as i feel so helpless but need to keep reminding myself theres people worse off but its hard when you wake up in the middle of the night scratching yourself silly and just sobbying your eyes out as your so tired! I find it more frustrating that you get no help from your doctors and ive had to pay privately for a dermatologist going to cost alot and who knows if the treatment will even work! Least we got eachother!

Posted Wed 9 Aug 2017 22.01 by Ashleighhillman
Had psoriasis since I was 10 now I'm 19, a younger person battling it throughout teens and now am up against dreaded media expectations

Probably worth asking about pills you can take, my grandad who has it takes some which are extremely strong got rid of all his on his body but makes him infertile I'm 19 and on my second set of phototherapy and I can relate to you all of that feeling of being fed up like a loosing battle I'd just say try not to care what people think and wear what you want the sun does good when more exposed!

Posted Tue 22 Aug 2017 20.35 by Acoconut

Hi all. Have had psoriasis for 15years now. UVB treatment worked well for me the first time. Cleared for over 2 years. Second time was clear for 6months. Recently I have been using pure 100% coconut oil on my skin and having coconut oil baths. Had great results with this. I no longer use any steroids. However at the moment dealing with a serious flareup on my legs and butt Damn.

Posted Tue 22 Aug 2017 22.47 by Jenn8

Hi, I have had psoriasis since 1989 when I developed Lupus which brought it on. Apart from the odd flare up it's been manageable up until April this year but now I am itching constantly. It's on my back, hips, buttocks arms, legs, and in my scalp right down to my neck, and I am getting little spots on my hands and up my arms. I started renal dialysis a year ago and having to sit hooked up to that machine 4 hours, 3X weekly while my skin itches is very unpleasant and exhausting, I use Dovabet cream and a thick emulsion prescribed to slather on but the relief is only temporary. It's all very well saying 'don't scratch' - they should try having it and see how quick they'd be scratching too. I think the dialysis has exacerbated my psoriasis and am at my wits end knowing what to do to stop it spreading anymore or itching. I can't see my dermatologist till January so goodness knows what it will be like by then. . Glad I found a group of fellow sufferers anyway.

Posted Mon 4 Sep 2017 22.06 by BobbyJean
I love heavy metal xx

Hi Sheila I will TRY to keep this short because I tend to ramble on! But I am 56 had psoriasis since 13. After much research on my part because doctors don't really give us much! Have learned its an immune system problem not just a skin disease. I have basically tried everything. Diet, stress relief, ointments, sunshine, haven't got into oral medication as yet because I really don't want too! Basically me being a big thinker if nothing else. Psoriasis is a side effect of something else I suppose because I have gotten over the younger years of what I look like naked!! I am more for looking into a reason! X.

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