At my wits end and in need of support/tips

Posted Sun 12 Aug 2018 20.48 by TillyPaws

Hi everyone, I was first diagnosed with psoriasis at 16, creams got rid of it until it returned over a year ago during my first year of uni. I never truly understood that psoriasis was something that would come back and be incurable and in recent weeks I’ve been really struggling mentally. I’m a 21 year old female and my guttate psoriasis is pretty much everywhere now but it’s worst all over my back and chest and ears. I just about manage to keep my face and scalp okay but it flares up every now and then. It has begun to spread even more to my legs, arms, tummy and chest and now further up to my neck. Sometimes I just cry and cry especially when I think about it getting even worse forever. Currently I am on a waiting list for UVB therapy but it’s a long wait. I thought I could get it sorted over summer but now I’m facing my final year of uni depressed and not being able to go out because I can’t wear anything and I’m afraid to drink. I dont know if anyone has been in a similar situation, I was looking at trying to transfer the referral up to a clinic at university so I could do it there when I don’t have classes without having to start from the beginning of the referral process. I’m also worried about the travelling and treatment being too time consuming. Strong steroid creams can clear it in a few days but it will be back in days if not hours. I’ve also been trying hard with my diet, moisturising and staying stress free but that seems impossible to especially as it gets worse! I have a small UV hand lamp I got from amazon which I am going to try - has anyone had any luck with that? I’m also looking at Dead Sea salt and sorion cream and bio oil. I just wish I knew what the cause was exactly. My confidence is so low I didn’t know what to do anymore and I can’t enjoy a holiday I’m on because I can’t swim or show my back. I came here to get some tips from you all but also I just need some support because I’m so terribly sad! Thank you all in advance :)

Posted Mon 13 Aug 2018 00.15 by pdr321
A long sufferer of plaque psoriasis who found an effective treatment after 27 years (blueberries). I have now been clear more than 5 years.

Hi Tilly, I am so sorry to read about your situation, and I can really relate to what you are feeling. I found my 'cure' after 27 years of plaque psoriasis. I don't know if it will work for guttate psoriasis, but you have nothing to lose as it is so simple. I have also posted about this on another discussion here and it has worked for a couple of others. Eat 15 to 20 blueberries every day for a month, then let me know how you get on. Good luck, Phil

Posted Mon 13 Aug 2018 16.57 by Annie

Hi Tilly, I really feel for you my love. I've suffered since I was 7 years old and now 51, I'm pretty much completely covered and I've tried pretty much everything on offer. PUVA treatment worked well for me and as a bonus for the first time in my life, I had a suntan 😁. Try to get out in the sun and I know it's hard but set you limbs free! People aren't as critical as you'd imagine and if they are, thats their problem. This goes especially if you're abroad, as people from other countries are nowhere near as bothered as us brits. The sun, sea and relaxation are the best tonic. Dont despair as there are plenty of treatments out there, some work better than others but there is a light at the end of the tunnel xxxx

Posted Wed 15 Aug 2018 16.49 by Roo92

hi there. I have suffered since I was about 7 years old (I'm now 25 ) and in these last few months it has suddenly got worse and is now covering a large percentage of my body. I went for an appointment with my gp today where I got a bit emotional saying that the dovobet/dovonex medication was not working. he proceeded to tell me that by getting worked up about my condition I am making it worse and continued to prescribe me dovobet and an cream I should be using 4 times a day (not practical as I am a teacher) so I'm lost atm and not making progress with them. I have a mixture of guttate, plaque and inverse so looking for options also. during this hot weather I haven't been going out or if I do I wear long trousers and sleeves. It really does get you down. I too have recently been quite upset over the fact that I can't seem to get rid. so you are not.alone! I have tried sorion cream and child's farm but both had very little effect and also have a UV lamp, which has proven ineffective. However I have been looking through this forum and found some very interesting ideas. I have gone out today and bulk bought blueberries to try that technique but I will also be modifying my diet to see if that helps. I've been following a kept diet recently so my gluten and sugar intake was very low, however I consumed large amounts of dairy. Moving forward I'm going to try a dairy, gluten and sugar free diet and see if it helps. My P gets worse as soon as I have any alcohol so have cut that. The best relief I have found so far are Palmers Coco Formula moisturiser, vitamin D3 capsules, as well as cod liver oil and acidophilus. I only bath in coconut oil and use soap, paraben and fragrance free body wash. on my scalp I have found a paraben free shampoo and conditioner from "Stemm" and it has really helped. hope some of this helps and I will be sure to keep updated about results of diet change. x

Posted Wed 15 Aug 2018 21.02 by Jenwarb

Hi all I'm pretty new to all this. Was diagnosed 3 years ago after a month of the doctors not having a clue what was going on. I was head to toe in itchy, huge red blobs. I thought it was going to be this way for ever. I tried everything the doctor would prescribe and even over the counter creams. Then I found something new, a friend of mine recommended kefir! I started drinking about a pint a week and within a few weeks my guttate psoriasis had cleared up. Not completely but enough for me to be able to stop hiding. Now after 6 months of kefir I only have a few patches on my legs. Unfortunately I'm having to deal with psoriatic arthritis but the kefir doesn't seem to help that as much. I hope you all find a way to help relive your psoriasis and if the kefir works for you guys as well as it's worked for me then that's great X

Posted Thu 16 Aug 2018 00.26 by pdr321
A long sufferer of plaque psoriasis who found an effective treatment after 27 years (blueberries). I have now been clear more than 5 years.

Hi Wendy, Perhaps my one type of psoriasis is simpler than some more complex scenarios described here, and certainly my solution has been outrageously simple too, but for me it has eradicated the symptoms. It's a miracle, I almost find it hard to believe myself. If only I had known about it sooner, but better late than never. I am truly blessed, I discovered my 'cure' as I was losing all hope, and had become quite hideous. It just shows that miracles can happen. If so for me, then for others too. Phil

Posted Thu 16 Aug 2018 00.38 by Roo92

hi Wendy, Thanks for your reply. I didn't clarify in my post how I was taking which may cause some confusion. I do alternate days of the fish oil and the vitamin D3 supplement and take 1 in the morning and evening. i have been taking the fish oil for about 15 years, originally for problems in my joints. The vitamin D3 has been more recent as i was advised i was lacking. I did seek advice before taking them due to me wanting to be on the safe side, and I'm confident in the fact that I'm not taking enough to overdose (I can't remember right this second the quantity). Of course, like anything, there needs to be consultation before trying any new supplement - so completely understand your comment.

Posted Thu 16 Aug 2018 20.20 by souxies

Hi Tilly, Ive had guttate P since I was 7 and I know how you feel. I used to feel like you but with age comes acceptance and experience. You can not cure P but you can learn what best manages your symptoms and what causes a flare. For me its usually a sore throat but we are all different. A flare of guttate usually stops spreading eventually and its easier to manage. I have had loads over the years and steriods do work like magic but are a very temp cure ☹️ I have found the sun and my uvb bed are the best ways for me and are effective for alot of us with guttate P. Have a look through the threads for a link to our facebook group for some moral support and ideas on treatments. I had a flare recently and was covered head to toe and our group really helped me cope. Im 80% clear now but my legs are stubborn. I had a holiday in Rhodes and bought a phillips narrowband uvb bed which is amazing x

Posted Sat 18 Aug 2018 20.08 by pdr321
A long sufferer of plaque psoriasis who found an effective treatment after 27 years (blueberries). I have now been clear more than 5 years.

Hi Wendy, You must have found my experience somewhat surprising given your connection with blueberries. It is perhaps ironic that this has worked for me, and a couple of others, given your past connection with this fruit. I am sure that my underlying auto-immune condition still exists, but it seems that I have removed the symptoms of it from my skin. Also I have to say that during the past couple of years I have had less colds than I usually get. Perhaps I am wrong in putting this all down to blueberries, but for the life of me I can think of no other change that I have made that could account for my sudden, rapid and miraculous recovery. At the time I was using no medication. I am no doctor and I can well believe that blueberries may not help other related auto-immune conditions. In a way coming on this forum with my story does feel a bit like peddling snake oil. But it is all true, and I have to admit it does sound a bit crazy, too easy, too simple. I do truly hope that other sufferers will benefit, and if not then I hope you can all find something else that will improve your lives. Good luck, Phil

Posted Sun 19 Aug 2018 00.04 by Mothmanc

Hi Tillypaws, I've just joined this forum and your post reminds me of when I started uni 30 years ago and was afraid of showing my skin in front of anyone. I've had mild to severe psoriasis all over my body since I was about 11. I have never found a cure but since I quit smoking about 10 years ago I started to put on weight. I watched Michael Mosley's Horizon documentary about the 5:2 diet and read his book before giving it a try. Not only is it a great (and free) way to lose weight but my psoriasis almost completely cleared in a couple of months. I don't know if it's because I cut down on bread and sugar or something else but it might be worth a try. I would recommend you read the book first and get the My Fitness pal app so you can monitor your food intake. Good luck! Pete.

Posted Sun 19 Aug 2018 10.44 by Terri

I have had psoriasis for 40 years but been under a lot of stress and now the skin on my palm of my hands and fingers are all peeling please help a bit scared

Posted Wed 22 Aug 2018 20.23 by TillyPaws

Hi all, Thank you all so very much for your tips, it's quite reassuring to know that other people understand how debilitating psoriasis can be. Sometimes I have days where I just think how silly it is to be so upset about red patches on skin! But I think only people who suffer from it really understand. I'm going to make a doctors appointment for some more creams and I'm going to use the handheld lamp so I can try and keep it at bay until I eventually make it off the phototherapy waiting list. If I can at least hide the worst parts when I go to university I'm hoping I'll still be able to have a good time! I'm also going to get some fish oil supplements and vitamin D and some dead sea salt for baths to see if that helps. I was also wondering if it's okay to use corticosteroid creams at the same time as using the UV Lamp? Couldn't find anything online about it.

Posted Wed 22 Aug 2018 20.31 by TillyPaws

It's interesting that many of you have mentioned diet and IBS. I think I will create a separate topic to discuss it because it's a link I've always been curious about.

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