My Psoriasis Living Nightmare

Sorry to hear you are suffering so much, I think it is a feeling many P or Psa sufferers have experienced. Speaking as someone with P but I have a family member with Psa so know what they have been through. Anyway there have been many advances in medication over the last decade or so but the docs like to put P patients on certain topical creams/ointments then oral tablets UV treatment, then biologic medication. There are oral meds and biologics that can treat both P and Psa and that may be something you can talk over with your derm when you eventually get an appt. I think our conditions are all about trial and error with medications, what works for one may not work for another. Good luck.

Sorry to hear about your struggles, I can relate completely! Having had severe Plaque Psoriasis since I was 3 (now 21), I’ve been through every treatment possible. I started with the usual creams, steroids etc... nothing worked, they put me on UV for a while, but my body grew used to it and it didn’t work. They’ve given me treatment such as methotrexate but it didn’t help and the side effects can be quite bad. After suffering 13 years, they finally gave me the option to try a Biologic drug called Ustekinumab. I know they have to apply for funding before you are given the green light to have it, so maybe it’s something you could query your dermatologist on? It was basically the last resort for me as I’d gone down every other avenue. Since 16 and being on the biologic for 5 years, my plaque psoriasis has disappeared and I get no flare ups. I get the biologic injected from my house every 3 months and it keeps it away. I too was covered head to toe & now my plaque is gone. Hope this helps!

I can only say what I did to get rid of psoriasis but everyone is different. I had a bad flare up and couldn't wear clothes for a while. I made a few changes and I'm psoriasis free for 11 months now. I took a vitamin D test and found out I was deficient. All I did was take Magnesium Glycinate (RDA), Vitamin D3 (3,000 iu) and Vitamin K2 ever day. Within 1 month my psoriasis disappeared. For the first time in 15 years, my psoriasis has been gone. Took the vitamin D test again and my Level was good. I didn't change anything else. Diet, sleep, exercise. Try it out and see what happens.

Thank you for your replies. I will give the Vitamin D a try although I already take multivitamins. I will try the magnesium and K2. I'd try anything! 4 cans of Enstiller doesn't work, just a temporary fix for a few days then its back. And even then I have days of shedding skin but then a few days of almost free relief. If I get an area of normal skin I can't stop touching it, ot soon goes though.

Ivy. New to this forum. About 4 years ago I had several eye operations and the stress gave me Shingles/PHN which was treated with the normal medication. At the same time I started having headaches and eruptions in my scalp and my assumption was that this was a continuation of the virus outbreak. I have been trying to 'cure' it with holistic treatments. A year ago my GP suggested psoriasis and gave me a treatment (Novirax) which helped immediately but has now started to fail. Can anybody please answer some questions 1) Is it normal for a headache to be a symptom of psoriasis ? 2) Does the pain come and go with no apparent cause? 3) Do you get 'bits' in your scalp that erupt then fall off ? 4) Does the pain go away for several days then return? I am not yet convinced I have psoriasis and answers to these questions would be helpful. PS I have this week started eating many blueberries!

Ivy, sorry to hear about your current problems. I am not familiar with Novirax. Everyone is different of course but I can't say I suffer headaches due to P, I did as a side effect of one of the oral tablets but that was years ago. You say your scalp erupts, is that flaky, scaly skin, like large dandruff? If so the doc should be able to prescribe a scalp application for you. Do you have P elsewhere I.E. usually places on joints, although it can cover any or all the body? The other thought it could be Psoratic arthritis, in which case you may need a referral to a specialist. Good luck

Thanks Steview. Doh!, My brain hasn't worked properly for a while. The products name is Nizoral shampoo for scalp psoriasis and although it helps ameliorate the discomfort its effect is only temporary. My headaches aren't normal and often feel like neuralgia which can be treated with just painkillers but the eruptions don't cease. I am at a loss about my condition and need examples from other sufferers for a conclusive diagnosis. There is little point in constantly looking for solutions when I'm not even sure what I'm curing!. I have today purchased Boots coal tar shampoo and will see over the next 2/3 weeks if anything changes. When we get back to normal GP appointments I will contact my doctor to see if he has any insightful words to progress this saga.

Sorry I can't be more help Ivy. My personal experience is with P rather than Psiratic arthritis (PsA). I have a family member who is on biologic treatment for PsA and she has suffered with headaches since childhood, now in her thirties. Do you suffer with any form of joint pain or do you have patches of P elsewhere on your body? I think you are right to go back to your docs plus ask for a referral If needed.

To the Op AdeB, your case sounds just like mine. For several years I had PS on my elbows but never considered it a huge deal. I'd even still wear short sleeves at that point. Usually I'd take an emery board and sand it down and put on the topical ointment Desonide and that helped. Fast forward to 2 and a half years ago and I accepted the Branch Manager position at the pest control company I had worked for for years. Big mistake. My stress level went from very little as a route man to off the charts as the manager and I even started drinking after work to calm my nerves. I was so absolutely miserable a year into that position I became very bitter at work and dreaded going in so much every day I would throw up literally every morning getting ready for work. During that year in 2018, my psoriasis went from a minor thing on my elbows to full blown psoriasis that currently covers 40-45% of my body. I had told the owners of the company that the stress was leading to this condition and that I might have to see the workman's comp Dr. The very next day, those two rattlesnakes that own that company showed up at my house after work and fired me, stating that "things just weren't working out". But I was not mad but instead thrilled beyond belief to be rid of that place and those two despicable people I worked for and by the very next day I got on at the best pest control company in California and as a route man and told them that despite my 27 years of experience I never wanted to go into management ever again. I wish I could tell you that my psoriasis got better but for two years now, it has just got progressively worse. When I get up in the morning I am stunned how much dead skin I shed during the night. My sheets are deep purple satin and it literally looks like it snowed in my bed. The dermatologist put me on Clobetasol Foam but like you, I had such a large area to cover I'd use almost a whole bottle in 2-3 applications and I felt sick from absorbing so much of such a powerful steroid. I refuse to get on an Immune Suppressant and not a single home remedy even comes close to helping. As far as the pain goes, I am thankful to have a doctor that will still prescribe Norco 10 mg, 112 per month. Most doctors are too damn afraid anymore because the media and the government have manufactured yet another phony crisis "the Opioid Epidemic". There IS NO epidemic, period if used as directed. You get a small portion of people who take 15-20 pills at once to get high on, die, and then people who take them for legit reasons like you and I are stigmatized. Your doctor gives you an opioid called Taramdol but it's very, very, weak. Even Tylenol 3 with Codeine is more effective than that and Tylenol 3 is basically worthless. If you want and need stronger pain relief, you have to really know how to put your foot down and work the doctors. Like your psoriasis mine has also changed in appearance lately but not on my arms but rather the legs. My arms still look like cauliflower most of the time but my legs now are less scaly and look more like a sunburn but they itch like crazy and are bleeding much of the time. If they get too unbearable, I put on a layer of coal tar which helps the itching a lot but it stinks. I was going to have my doctor prescribe the 6 foot home light treatment but began thinking, what's the point if it's just going to come right back when the treatments end? At the rate my situation is progressing, 75% of my body will be covered a year from now and I'll be one of the guys on Google Images that people gasp in disbelief at! I hope your journey will work out better. Personally, I have no hope for myself.

Lawrence, I have read your post and you could be right that the added stress can make P worse as you experienced. We all have levels of P coverage over time and I can understand what you are going through. You state you don't want to use immonosuppresent meds, can I ask why? It sounds like you are in a desparate way at present and having to take other meds such as opiods and injections. My opinion and please don't think I am disagreeing with your opinion is that there are some great treatments out there that have proved successful for P or PsA. Such as biologic treatment, methotrexate etc. With regular blood checks and monitoring you could lead a regular life with pretty good skin clearence. Not all meds for P work for everyone so a matter of trying them out. Surely quality of life is important.

Thanks for the reply Lawrence, you probably have to go with the advice of the Derms. I am a little older than you and suffered since teenage years. I had it bad for about ten years, taking a lot of time off work as a hospital in patient. Then came years of different drugs, uvb, treatment and now biologics. I cannot imagine my quality of life without having taken those meds. At worse head to toe probably 80% coverage to near total clearence. It is all about trial and error and seeing what works for you and what you are comfortable with. Good luck.

Thanks buddy, I appreciate it. You too.

I’m so glad I found this forum today! I’ve been living with the condition for about 10 years but only on my knees and elbows but over the last year it has spread in round little patches all over my body and it’s very itchy and burning and my scalp is also very painful, I’m awaiting light therapy at the moment and have tried lots of different creams but nothing works, I had no idea about all the different medications there are until I joined up today, my doctor hasn’t given me any of this information. I am currently trying a high dose of Cbd oil topically and also taking it internally. Has anybody tried this before, I’m only on day 2 and obvious it’s to early to tell if this will work .

I am really sorry to hear about your condition. I had a similar situation, I have been playing around with my diet and have been so far successful at controlling the psoriasis. It is not spreading but sometime have days where it becomes itchy but I know that I have been not so great with the diet. Steroid creams were useless, they feel good at first then the psoriasis comes back with a vengence. Never got to the injections as I found ways to manage it, and in my personal opinion, it is due to poor diets/nutrition. I have been learning lots over the past 10 years and you can have your skin back close to what it was before all this started but you must begin by being strict with the diet. Cheese and sugar are the worst things for psoriasis suffers. Good luck and all the best.

Thank you for that information, I absolutely live cheese and never realised that would be bad to eat! I’ll defend research more into my diet 😊

Yes me too, big fan of pizza. However, be aware of your digestion. The way I understand it, imagine if there is an increase of pressure in your mains water, what you get is eventually a leak. Western medicine system focuses on patching up the leak. But the pressure is still there, you will now have the leak reappear or there will be another leak somewhere else. The first leak could be psoriasis the 2nd something else and so on. My body felt inflamed internally. I was borderline over weight, living on approx 60% processed foods. These are harder to digest. If we carry on eating and snacking then the digestive system becomes overloaded, then you have a leak. If you feel bloated after meals or constipated, these are all tell tell signs. Try fasting one day a week. This helps to ease the burden on the digestive system. Sip on hot water through the day and avoid cold drinks. This really helped me although it is a slow process but we did not catch this problem overnight and I accept that there is no overnight fix either. Good luck, stay safe.

it's awful, been waiting 9 months for derm appointment, don't want to live anymore

@Josh93, sorry your appointment is taking so long. Please seek help if you are having a rough time. There is a link to a confidential helpline on this website. Hope things improve for you.

Update. After another year of waiting I was finally put on Methotrexate. It worked fantastically! My skin was better then ever but it damaged my liver so had to come off it. I had to wait a while but eventually but on Biologic injections, one every two months. A few months later and I'm still pretty much clear. I've got a patch on my leg that won't go away and occasional bits elsewhere. But life is much better now! So hold on in there! Keep pushing your GP! When I saw a specialist she said she'd never seen it so bad!