My Psoriasis Living Nightmare

Posted Mon 15 Jun 2020 7.10pm by AdeB (edited Mon 15 Jun 2020 8.26pm by AdeB)

Hi. New to forum but lived with Psoriasis for past 2 years. Probably longer without knowing it but seriously with plaque and arthritis 2 years. It started with pain in my right knee which I went to see GP about, he noticed red patches on my knee and thought it was some other skin problem. Within a few weeks it had spread all over my body and was diagnosed with psoriasis, I'd never known anything like it, it took over my life overnight.

I was referred to a private specialist via the NHS and had a full UV treatment for a number of weeks that virtually cleared it up but since then I've been waiting to see a specialist at hospital for over a year which is ridiculous and no end in sight with the Covid crisis. In the mean time I have Enstiller and Doublebase gel. I'm covered from head to toe with plaque, the Enstiller really helps but I only have enough to cover my whole body once a month which clears my skin for a week but the plaque comes back with vengeance. I try to put Doublebase gel on as much as I can but it does get rather depressing after a while. I have to vacume everything and everywhere daily, I can fill a Dyson cordless in a couple of days, its ridiculous.

My skin has changed recently, mainly on my arms. Instead of plaque that flakes it peels like I've had sunburn. I'm not sure why its changed.

The pain in my knee that started everything is psioratic arthritis. I had a couple of steroid injections that really helped but I can't have anymore because my skin is too badly covered with psoriasis, it could cause infection. Ot has becoming worse to the point I can't walk some days. I take Tramadol but I'm not given enough to ease the pain. Its mainly in my knees but I now get it in all my leg muscles aswell.

I also have fibromyalgia that I've been diagnosed with for 11 years, I've read its tied in with Psoriasis. I take pregabiln for and Tramadol for the pain.

Can I ask if anyone has advice? Other treatments? home remedies? Better pain killers? I'm sure it's all been asked before. I'm sorry to ask again but it is a living hell.

Posted Tue 16 Jun 2020 12.48pm by Steview
A P sufferer for over 30 years, through good and bad times.

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.

Posted Fri 19 Jun 2020 11.22pm by Leah

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!

Posted Wed 24 Jun 2020 10.32pm by Rorschach

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.

Posted Fri 26 Jun 2020 3.02pm by AdeB

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.

Posted Thu 2 Jul 2020 8.29pm by Ivy

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!

Posted Fri 3 Jul 2020 8.05am by Steview
A P sufferer for over 30 years, through good and bad times.

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

Posted Fri 3 Jul 2020 1.51pm by Ivy

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.

Posted Fri 3 Jul 2020 5.53pm by Steview
A P sufferer for over 30 years, through good and bad times.

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.

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