HELP - No options for treatment left

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Posted Thu 29 Apr 2021 11.41 by MyaAshley

I’ve suffered with P for over 10 years and I’m 21. I’ve had many different types of topical creams and steroids yet continuously flare up. I’ve changed my diet, habits, water many times and nothing works. I’ve also had 2 rounds of the light therapy so cannot have anymore. The only option left to try is the immune depressants, which I don’t want to do in a pandemic. I have P on my scalp and all over my body, I have no large plaque areas just small but everywhere! I’ve also had traumatic experiences with specialist doctors so don’t really want to go down that route again as it didn’t help previously. Does anyone have any ideas or skin care routines that help? Thank you in advance!

Posted Thu 29 Apr 2021 12.00 by lizziep

Hi - I really feel for you. I've had Psoriasis since I was 28 and I am now 76. It is a soul destroying disease especially for someone as young as you. I tried everything going until I finally was put on immune suppressants about 20 years ago. It was a life changer and I was so pleased. When the pandemic hit, I received a 'stay at home' letter as the drugs made me extra vulnerable, so I immediately came off them. However, I had forgotten how much I hated having Psoriasis and I fully intend to go back on them in the Autumn. it is something only you can decide.

Posted Tue 4 May 2021 15.28 by FRose97

Hey, I've been mainly self treating my P and I have found some products that I like to use that aren't medicated. For my scalp I use Dercos Anti-Dandruff shampoo which I cannot reccomend enough, specifically the one for dry hair though as the one for oily hair can irratate the patches, I noticed a big difference whilst using it, it really helps with getting rid of the scales unlike coal tar shampoos. I came across a post on here about 6 months ago about eating blueberries and that works really well! I noticed that by eating at least 20 everyday, (and it does need to be everyday), it can make a huge difference, it normally takes around 2 weeks. Also probiotics can help, although it takes longer to kick in it will make a difference, there are specific bacteria strains that will help the most, there are medical journals online about which ones help. If you're looking for a cream then you should try A-Derma hydrating repairing cream, however you cant buy it in the uk, the one ive bought off amazon was a fake and works ok but the real cream is amazing and takes the redness away. Also I found that CBD helps too, if used topically, although I have heard that it has helped some when taken orally. I really hope this helps! If you'd like any more info on any of these then let me know

Posted Mon 24 May 2021 12.08 by twiggy3

Hey MayAshley, completely understand your reservations for not wanting to start on the immunosuppressants as they have a pretty bad rep. I think a lot of this comes from a misunderstanding of there uses, the dermatological dosing, understanding of limited side effects with these doses etc. A lot of the perceived side effects we hear about are usually from the huge doses for cancer treatments etc. I have been on the methotrexate for around a year now and thankfully haven't suffered any ill health because of them. I also understand the fear of being on them whilst this whole COVID mess is around. I'm a paediatric nurse by profession and also recieved numerous shielding letters in the past year. I thought long and hard about shielding and after discussions with my consultant (who was great) and a couple of peers at the hospital I work at I decided to continue working clinically throughout in Central London. Again, I have been healthy throughout and thankfully didn't contract Covid. A lot of the fears and assumptions are were/are only theoretical due to the virus being so new and we had a limited understanding. Again dermatological dosing's are often small so the risk again is small Anyway I hope sharing a bit about my experiences lately might help you in your decision BW James

Posted Tue 25 May 2021 19.50 by Matt1972

Sorry to hear this, but really you need see a dermatologist. I went through light treatment and got a great tan and was completely clear from p for about 3 months. Then it came back. Cyclosporin and methotrexate will help a lot and at least give you a relief. Having been on both, I can say they have helped, although I still have patches. But nothing like the 90 percent coverage i had.Going onto biological injections next month, so I can't comment on them, but feel confident judging from conversations on this forum. Good luck.

Posted Sun 13 Jun 2021 23.52 by Mary1968

Hello MyaAshley I have had psoriasis for my whole life, and it was particularity chronically bad in my teens and early 20s. I always thought this was due to the hormonal changes taking place at that time. But looking back now, I feel it was probably more likely because my diet was lacking, I was deficient in certain vitamins, and I dealt with stress badly. In my opinion, 21 is awfully young to be thinking about biologicals. Because once you start, you will likely remain on them for life. But you have to do what you think is best for you. Hope you find relief soon

Posted Wed 23 Jun 2021 19.16 by V62

I have had psoriasis permanently for 39 years which is currently everywhere. Things I have found useful- exercise as much as possible. Yoga and other chill out activities are also good. Drinking in moderation. I cook all my food from scratch with lots of veg. I also try to be outside as much as possible during the summer with sunscreen. This all used to help when I was younger but not so much now. Note my psoriasis never went completely but it was at a more tolerable level. Good luck. You just have to experiment and find the best options for you and be realistic about the goal / result that will make you happy.

3 Posted Sat 10 Jul 2021 01.48 by Angry

MyaAshley Cream, light therapy are a waste of time. If you really want to control your psoriasis you need to go on biogicals. Once your on biogical it's a good idea to change your diet to a healthy one and lots of exercise and to lose weight if you can. Psoriasis is a attack by your immune system on your body, your not going to get better with creams and light therapy.

Posted Sat 10 Jul 2021 12.56 by OhNo_NotAgain?

Angry: I will quote YOUR comment from another thread but changing the word biological in your comment for the words "cream, light therapy": "You are not a doctor, you should not gave advice to people that cream and light therapy do not work".

Posted Sat 10 Jul 2021 13.02 by MyaAshley

Thank you for all your replies! As an update, I have decided to try the restrictive diet approach, e.g. no nightshade veg, gluten or alcohol, to reduce my triggers, i don't get bad stomach aches at the moment but only a week in. I am currently using more oil based creams such as nivea and coco butter, however seen no improvements yet. I still do not want to use biologicals or medicine to suppress my immune system. I recently had the COVID19 vaccine which caused a flare up, which I expected.

Posted Sat 10 Jul 2021 14.42 by OhNo_NotAgain?

I was perhaps fortunate but I had no flare-up at all from Covid vaccine (AZ) nor from any other vaccines I have had this year.

1 Posted Sun 11 Jul 2021 03.00 by Angry

I did not say that they do not work I said they a waste of time.and if you read the literature on psoriasis you would know that. Psoriasis is auto immune disease and creams and light therapy are not treatments for auto immune diseases. The creams and light therapy just help you manage the symptoms of the disease, please don't act like you know everything you don't.

Posted Sun 11 Jul 2021 08.59 by lizziep

I do have to agree with Angry. I had 20 years with no psoriasis AT ALL by taking Skilerance, having spent the previous 27 years trying everything else. I came off it because I panicked when COVID came alone as I am 76, but I am desperate to get back to it.

Posted Sun 11 Jul 2021 13.12 by Steview
A P sufferer for over 30 years, through good and bad times.

In reply to comment by Angry. Most of us with longer term experience of P know the hoops we have to go through to get certain treatments. Yes biologics can be really effective but I have read numerous patients experience that they have tried and failed different biologic treatments. One treatment does not fit all. I disagree that creams and UVB are a waste of time although understand your reasoning for that statement. If a certain topical gives relief to a patient or a series of light therapy gives clearence for a length of time then that improves the patients quality of life so can be deemed useful and successful for that period.

1 Posted Sun 11 Jul 2021 13.53 by Angry

I agree with you steview that cream and light therapy do help and not all biological work on everybody. All I am saying if you suffering for a long time with psoriasis and cream and light therapy is not working then biologicals are the next steps. I my self have self funded light therapy and have had no results so I have decided to go to the USA to see what biogicals theyare using and for long holiday as soon as we come out of lock down, I know it will be expensive but I cannot live like this. I was going to buy another house with the money but plans change.

Posted Sun 11 Jul 2021 14.38 by Steview
A P sufferer for over 30 years, through good and bad times.

Angry, that is a desparate position but if you have the resources and are willing to try to self fund then good luck. I wouldn't even know where to start because most Americans have private insurance for their meds. Have you thought after your initial 'holiday period' how you will continue a supply of the meds and follow up blood tests and monitoring? Rather than going to the US couldn't you just self fund biologics in the UK if that is your goal. Again I do not know the process but again would be an expensive exercise. If you have exhausted topical and tried UVB then why not try out a couple of systemics in the UK. These can be successful treatments, plus gets you on the road to biologics through the NHS.

1 Posted Sun 11 Jul 2021 18.16 by Angry

Unfortunately I do have the resources to do this and if I don't and the disease gets worse I will regret it,II don't like spending money but I need to get on top of this and also I am not going to buy the treatment in USA I just went to find out and compare the differences while I am holidaying there. It does not hurt to find out how different countries health systems work, let's say I was on holiday in India I would to the same thing. Just because I want to deal with it quickly does not make me desperate. The NHS which is a great thing but if you have to remember it has guidelines to follow which makes to slow.

Posted Sun 11 Jul 2021 19.30 by lizziep

I don’t understand why you are not trying the biologicals on offer her, Angry?

Posted Mon 12 Jul 2021 00.49 by Angry

I want to find out about the new biological that the FDA has approved in America, I am going to America for a holiday so I might well as visit a clinic to find out.

1 Posted Fri 16 Jul 2021 18.47 by mc247rainbow

I have joined this forum to share ideas and in doing so to support each other. I think we all realise that there is a long way to go before we are likely to find a cure for psoriasis, if at all. Whatever treatment we choose to help us manage it is very personal. Good luck to you all with whatever you try. Sharing our experiences is very useful and a great way to offer support. Taking care of myself in every way I can - focusing on the good things in life such as friendships, new experiences and trying to live a healthy life helps me to stay positive and helps me to manage my Psoriasis. Thankyou for the helpful and positive comments you have made but PLEASE no more bickering. I like to think we are hear to support not undermine each other. RAINBOW
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