Looking for some help

Posted Sat 9 Jan 2021 15.40 by kalina

Hello, I have been diagnosed with psoriasis when I was 18. I am now 20. I feel really discouraged about how my life will look. I have to use prescribed ointments which one day will probably stop working according to my doctor. I use moisturisers, shampoos, etc etc.. all expensive and for psoriasis.. prescribed and not prescribed.. nothing it won’t budge. It makes me want to cry. The only thing it responds to is these ointments but how many can my doctor go through before there is nothing more? I can’t have photo therapy, they said I have to shave my head for it.. I really don’t want to, I’m 20 and I don’t want to remove all my hair for this. Then they offered injections etc.. all that suppress the immune system.. also not the way I want to live. For now I stayed with the ointments because they help.. but I’m terrified for the life ahead of me. I am terrified that I will get arthritis, have to take these medications etc.. I think it is just terrifying to me because of my age, my whole life is filled with uncertainty. I can’t even book a doctors appointment because of covid. I feel very lost.. it’s also so expensive to keep buying this prescribed medicine which one bottle only lasts a month at most.. my biggest fear is this thing spreading to my face, it makes me want to cry at night. I guess I am just looking for some advice.. maybe experiences of people who have been diagnosed around my age too, I would just love to hear some positivity because everywhere I turn it seems like my life will be absolutely hell. I had therapy but they changed it to phone therapy and we felt like it didn’t work at all anymore.. so I was asked to return when therapy is face to face. I feel very alone in this.

Posted Sat 9 Jan 2021 16.58 by SharonG

@kalina Do not let it get you down - I know that is easier said than done but please scroll through the forums on here - check out the Blueberry thread - there are lots of people on here who can tell you what they use - just take the time to have a look - do not give up ok - it can get better. It is all trial and error sadly until you find something that works for you ok?

Posted Sat 9 Jan 2021 18.36 by kalina

Thank you for your kind message. I will definitely look through the blueberry thread. I think what confuses me the most is I often have gotten mixed messages from doctor, eczema then psoriasis then eczema and then psoriasis. The way my scalp looks is called Pityriasis Amiantacea which can appear in many conditions.. so it would be logical to do a skin biopsy but.. none of my doctors have and keep changing their mind. It makes it much more upsetting when my diagnosis is thrown around,, all these serious skin conditions being slapped on my records without anyone doing any thorough investigation. Currently they say it’s psoriasis and I feel like what makes it much harder is the fact no doctor actually done a proper diagnosis - it makes it so harder to treat no skin biopsy or anything. Does anyone here know if there is a way to get a skin biopsy? Has anyone managed to convince the NHS to do it? It’s so much harder to treat something that I am not sure I even have. Worst is I don’t get dermatology appointments anymore to check up my progress, which is very saddening since my GP really doesn’t know about skin conditions and the only thing he does is look at popular ones and slaps them on my prescription. It’s a bit disheartening.

Posted Sat 9 Jan 2021 19.57 by SharonG

@kalina I am so sorry to hear that your doctor is not helping - keep going back and insist - or maybe see another GP - do not let them fob you off because you are young - you tell THEM! Ok? They need to find out exactly which one it is and go from there. Be strong ok? Ask them to refer you to a dermatologist - they have to do this ok? See the dermatologist and go from there. Good Luck - and remember there is help out there you do NOT have to suffer.

Posted Sun 10 Jan 2021 17.02 by kalina (edited Sun 10 Jan 2021 17.03 by kalina)

Thank you, I definitely will. My main problem is that I was at a dermatologist but he hasn’t done any concrete tests like skin biopsy etc. considering some doctors said it was eczema and some psoriasis it feels like he should have. I share more symptoms with Seborrhoeic dermatitis. My scalp is very oily, my dead skin is often yellow, never silver. My skin also isn’t thick at all.. so it makes me really doubt my diagnosis. How likely is it that the diagnosis is wrong when it comes to the dermatologist just looking at it with a naked eye? He looked for about 4 seconds, didn’t ask me any questions about my health or family history. Nothing. I am just doubtful considering doctors either say eczema or psoriasis or Seborrhoeic dermatitis and none of them done tests to check.

Posted Sun 10 Jan 2021 17.24 by Mila (edited Sun 10 Jan 2021 17.28 by Mila)

Hi I first hand know how psoriasis makes you feel I didn’t wear sleeveless for years however you need understand that GP are just general practitioners sitting behind a desk. I was lucky I went to a private Dermatologist and he said make sure you see a Dermatologist that is part of the British association of Dermatology and not someone that has studied dermatology. So firstly please go and see a proper dermatologist. The one I saw was in Harley street and is one of the best google him Dr Adam Friedmann. He helped me and wrote to my GP about the steps they should take for me and also the psychological impact it had on me. So that is step 1 step 2 - I go and see a specialist Homopothic but not a typical one he is based in Scotland and has a special machine which only about 3 people in the UK have. The same machine in Harley street will cost you £1800 for the consultation and then £1200 after that. Ian on the other hand is not in it for money and charged £;120 for the consultation and then £70 after that (if you go back). Anyways point being I am now psoriasis clear and only have eczema left after visiting Ian in Scotland the last few years he has changed my life. He tests the pins of your hand and feet and knows what is the cause of the problems. Remember GP’s just treat you they do not clear the issue for you, Ian will give drops but he is not a magician it will take time and patients with him. I would much rather pay £120 then £1800 and travel to Edinburgh. A lot of my friends went to him for various reasons and got better. I highly recommend him. His email is - Ianeeles@hotmail.co.uk I hope this helps. There is help out there you just need to know the right people. Thanks

Posted Sun 10 Jan 2021 18.11 by kalina

I definitely can’t afford private dermatologists but thank you for the advice. I did see a proper dermatologist but as I said, I don’t feel like the diagnosis was correct and I am unsure where to go from here. I don’t feel like the NHS will take it kindly if I say I feel there has been a misdiagnosis.

Posted Sun 10 Jan 2021 19.03 by Mila

I understand it’s very hard a private Dermo is no more then £250 but still get if that’s a lot. When we are out of lockdown I would recommend Ian or someone your more comfortable. Something that helped me also was Colloidal Silver it helped to reduce the inflammation you can get it from Amazon. Just spray it on you should see the difference.

Posted Mon 11 Jan 2021 18.10 by Maz

Hi Kalina, I am sorry that your psoriasis is affecting your life so much. I got diagnosed at 19 and am now 23. When I initially went to my GP he just said it was eczema The flakes got worse and I would get anxious and pick them and my hair started to fall out. the scales got gross and yellow and I eventually went back and requested a female GP, and brought up psoriasis. When she looked at my scalp she said it was the worse case she had ever seen, and gave me some strong steroid serum. As I was studying biology at the time I knew the dangers of long term steroid use on skin and your body long term. I have since had flare-ups on my face, genitals, ears and scalp again but now manage it through diet. I bought a book called healing psoriasis written by a doctor with 20 years experience. In the first 2 weeks of following his method my face cleared up completely. I still get flare-ups because I am not always following the diet and regime he recommends but when I do my condition is so much better. The book is about £20 on amazon, which is not cheap. But it the best investment you will ever make in terms of managing your disease (well it was for me anyways) and you can keep it all your life. Im sorry to hear that you, like me have had troubling experiences with doctors. The second doctor i saw was very kind and lovely, perhaps try a different GP surgery? I have now also discussed the benefits of a changed diet with my GP and she was really interested in it. There is also this great video on youtube which made me feel a lot less alone and inspired me to keep up with my diet: https://www.youtube.com/watch?v=gXz3RxLSb3M

Posted Mon 11 Jan 2021 18.26 by SharonG

I paid £180 for a private consultation at the Nuffield - you could ring your local one and check to see how much it costs. Personally I would badger your GP again and push for another referral - ask them about doing skin tests etc, GP 'should' point you in the right direction but they are not experts but SHOULD help to get you where you need to be. Good Luck.

Posted Tue 12 Jan 2021 14.07 by Scott in Toronto

My experience is in Canada, not in the UK. A biopsy is free in Canada. If it's something you can arrange, I do recommend that you push for a biopsy. I developed severe psoriasis after an allergic reaction to penicillin. For the first year, my dermatologist diagnosed my condition as eczema. He was out of the office during one of my regular visits, and so I was sent over to see another dermatologist in his practice. She thought I probably had psoriasis and had a biopsy done. She was right! That set me on the path to eliminating my psoriasis. The biopsy was a game-changer for me.

Posted Wed 13 Jan 2021 07.21 by Rachel

I’m 67 and I really think my psoriasis started about 15 years ago when I went through several really traumatic life experiences. It’s moved around my body since and was on my elbows and back. Since I retired those areas cleared up but it then flared up on one eyelid under the eyebrow and knuckles. Anyway I have reduced stress in my life via having a little dog to love and absolutely doing my best to never eat anything sugary. So less stress, better diet, I got fed up with ointment from the doctor instead slather on Vaseline or Neutrogena hand cream and use a hot flannel to wipe away scales In the morning, moisturising every few hours. Last week I was drinking a small bottle of unflavoured kefir, when it finished I turned the bottle upside down with the lid on to drain it, stuck my finger inside to scoop out the residue and for some reason decided to dab it on my eyebrow. Wow so soothing stopped the itching so carried on applying some every few hours. A week on no psoriasis completely cleared up, I don’t know if this is just it was going to move on or clear up anyway or something Miraculous in that Kefir.

Posted Sat 23 Jan 2021 20.45 by fallon1983

hello, I feel your pain. I first got psoriasis at 13 years old. It started on joints but soon spread to hands, then joiend up, and Ive mainly had it fet up to knees and hand up to elbows since being 14 years old, it irregularly comes other places too. I'm now 37. After 20 years of going to GP's and being prescribed creams, which only moisturised it, I finally got prescibed a tablet which I take doaily,a dn have to have a blood test before being prescribed it, it is now controlled and almost gone. I still itch but it is so much better. Yes, 20 years of hiding my skin with clothes, and being embarrassed at times, having UV sun bed at hospitals, coal tar baths, I am happy to say there is probably a tablet which can really help. but, from my experience, the doctors allowed mine to worsen and worsen before they helped me. I had known that it would spread, as my mother also suffers with it, and I knew the same would happen to me. Now we both are on tablets for it. Current problem is, my only child, my daughter has also developed it in Apr last year, since then it has spread in parts from head to foot including face, nipples, bottom.....I have already taken her to a dermotologist who has prescribed creams, but due to her age she can;t have any thing too strong. I feel I fought my battle and now Im fighting a harder one for her, as she is far too young, and is so confident I fear as she ages and it worsens it could affect her, I always tell her it does not define who is is. Her dream is to be a singer. I will not let psoriasis ruin that, I am seeking any help for her I can. I wish you luc, and advise you to keep fighting your corner and keep asking for help.

Posted Sun 24 Jan 2021 14.10 by angela r
4 years

Kalina I am so sorry to hear your story. I can't imagine what you must be going through at such a young age. I was in my 50s when I was diagnosed. The fact you are not receiving much help from your doctor or getting any concrete advice is terrible. My psoriasis became very aggressive very quickly and they put me on a drug called Acetretin for about 6 years then I started getting long term use problems like very painful bone issues. I am now on a trial drug and it has really helped (I don't know what it is called obviously as it is a trial). However about three months ago my psoriasis patches came back and were very red, scaly, itchy and widespread. On the drug trial I am NOT allowed to use any steroid creams for obvious reasons. I was at my wits end. My cousin has had psoriasis since she was 16 and she is now on methotrexate, having tried many things over the years. She told me about a cream she just had bought that is really helping her which is all natural/plant ingredients and I thought well I have nothing to lose. I ordered it. I have looked up all the ingredients in the cream and they are plant extracts. The cream and leaflet are all in chinese but I didn't care. I ordered it and been applying 3 times a day for two weeks. My psoriasis has all but gone. I cannot believe it! I only use it twice a week now but it is there for flare-ups. It is despatched from the US but obviously a Chinese herbal medicine company. |It is called "Original Advanced Psoriasis & Eczema Natural Herbal Cream". Good luck going forward. When you're in pain you will try anything and I am so glad I did. The website is www.smilesandjoys.com

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