Psoriasis -advice before GP appointment

[artishard]

Hi,

I've suffered with minor patches of psoriasis for the last ten years or so. Following breaking my arm and the subsequent surgery in November, I am now covered in psoriasis patches and plaques (also affecting my scalp to a considerable degree).

I've overhauled my diet, use emolient cream daily but it's just got worse and worse. I have a doctor's appointment this week. Can anyone advise what I should be advocating for to my GP? Would it be reasonable to push for a dermatologist referral? Would this be classed as a severe case of psoriasis, or is it relatively mild?

Pics attached for reference. The one of my arm follows the line of the surgical scar.

If are covered head to toe in psoriasis you should be referred to dermatology. If your GP won't do it, ask to see another GP.

UV light therapy does work. You stand naked in a UV light tube for a minute - i think i had ten sessions, one a week - and my psoriasis has not come back (touch wood).

Ask for dermatologist referral make sure you request for an urgent one . Non urgent referrals take about 6-14 weeks but be aware they have COVID backlog. But it's best to get ton the list. Gps are unfortunately restricted on prescribing certain skin medication which just isn't fair to the patient. Take a list of all the medications you have tried also take it as and when you get the dermatologist appointment so they don't end up prescribing you what you have already tried and hasn't worked.

I would suggest you to push for an urgent referral. Tell them how this is affecting you so they understand. You should be on repeat prescription of topical corticosteroids. Have you tried Dovobet (gp prescribed medication)?

Lastly you need to be persistent with constant appointments until they refer you. A lot is changing at nhs so I know there is only so much the doctors can do but I do hope that you get something that works for you.

Dr Berg ( online health video creator) says psoriasis needs high dose vitamin D. I was surprised, it was something like 40.000 iu. How high a dosage did you take, and for how long?

@Doliveira wow that's huge! I didn't know dosages that high could be safe. I take 10,000 IU and I'm also gluten free but that doesn't work for every person with psoriasis. It helped me, though.

@BurbageBrook it is huge isn’t it! I have upped my dose to 10.000iu and also gone gluten free. Feel better for it too.

I think there are vitamin D creams too.

Hi all, just an update for the thread. I visited my GP who prescribed 3 x dovobet cream for my body and 3 x betnovate for my scalp. Unfortunately it has only got worse in this time, including a worrying patch on my tongue which I presume is psoriasis, but I guess could be something different also. Anyway, I have a follow up appointment Monday to discuss my treatment. Any advice on pushing for a treatment that isn't a topical based steroid cream?

Thanks to all that have given advice so far.

Jeez @artishard you poor soul. I could cry for you. You shouldn’t have to put up with that. I truly hope you can get some help on Monday

Not true my x has had the treatment and still is covered.

Enstilar foam pro tem, and an urgent dermatology referral, I would say.

Ah thank you for your kind words. it's pretty demoralising not gonna lie! I'm able to cover it mostly at the moment but I'm definitely conscious of summer approaching, as well as the relentless soreness and itching! it's mad to think that my skin was completely clear less than 7 months ago. 😔

Please insist on a dermatology appointment, you really don’t have to put up with that these days. I started private but my dermatologist moved me to NHS to put me on biologics. After years of messing around with creams these drugs changed my life.

@PinkTonic same here. I am on Adalimumab (a biologic) following a flare-up like OP's in 2020 after decades of topicals, UV and lifestyle efforts.

I'd say you need a referral and systemic medication - that's what mine gets like and it's just not possible to manage it with creams. I guess you'd have to try methotrexate as a starting point.

I'd definitely be looking down the back of the sofa for the money to pay for an initial appointment with a private dermatologist who also has an NHS practice. Oral Psoriasis on top of the flare is too much for anybody to have to put up with.

This thread has appeared at an opportune time for me. I developed psoriasis 2.5 years ago after surgery (though not specifically on the incision sites). It has worsened time and again, and I'm now feeling pretty miserable about it. It's guttate type and is everywhere except my neck, face and scalp (for which I'm grateful).

I'm also struggling to get a dermatologist referral. I did see one once, privately, and the treatment protocol was the same as the GP's. I'm hoping to get phototherapy on the NHS but I imagine the wait could be long. To go private for phototherapy was expensive and inconvenient, not doable at all.

Has anyone tried one of those hand-held UV devices you can buy?

@BurbageBrook @Doliveira
Regarding being gluten-free - can I ask did you try this on your own, or after medical advice or testing for intolerances?

How long after giving up gluten did you see an improvement?

I've given up various foods with no change whatsoever: dairy (3 weeks), alcohol (6 weeks), nightshades (3 weeks), sugar (3 weeks), citrus (3 weeks). I have no real clue how long I should give it. My diet is overall really excellent, I exercise, I sleep well, I barely drink. I've never been as healthy and my BMI is 20.5.

I'm psyching myself up to try gluten-free next. I think it'll be the hardest.

Has anyone else changed their diet and successfully improved their psoriasis?

I just dropped gluten on my own, no testing. I also upped my vitamin d levels to 10.000iu a day, started taking fish oils, circumin, and yes I use red light at home, I have the dr Dennis gross body panel, I use it daily. I use healpsorin cream.

Oh, and about how long it takes… degree of improvement relatively quickly as the inflammation levels reduce , then slower progress because diminishing systemic inflammation is a slow process. I’ve started looking at vagus nerve work, to calm the body.

I also take magnesium glycinate to help me sleep better and a daily greens shake to cleanse the body and drink a few litres of bottled water a day.

Doliveira I am also really interested in the vagus nerve for autoimmune. What are you considering. I was looking at nurosym but wasn’t sure how effective it is and it’s really expensive at £700. Also wondered about cold showers as I believe this may trigger the vagus nerve

@hippospot I did it on my own. An aunt had told me it worked for her so I went for it on New Years Day of 2020. By around March, I saw a big improvement. So around 2-3 months. Never had any testing as I don't think I'm actually gluten intolerant. I think my skin just doesn't like it. My skin isn't 100% perfect but it's about 10 percent as bad as it used to get.

@hippospot I also find my skin loves it if I eat tons of green vegetables. Alongside GF and vitamin D supplementation.

I think anybody suffering this much will definitely need to see a consultant even privately. I was so sick with psoriasis,
I t was 90% over my body and I can’t believe now, looking back, that I wasn’t hospitalised

I tried everything although I drew the ok e at methotrexate. what worked for me was diet and probiotics.

no:
wheat
sugar
booze
fags
caffeine
nightshades (tomatoes potatoes aubergine)

an absolute pain in the ass. I just did keto, it seemed much easier to stick to.

I am so sorry, it is just so awful to live with x

Hi all,

Thought I'd update the thread a little further down the line. I have been referred to an NHS dermatologist, which miraculously came through in under 2 months!

The dermatologist advised that I am an unsuitable candidate for methotrexate, and that light therapy could be an option but has a long waiting list and would be difficult for me to commit to the appointment schedule required. The next port of call is cyclosporine- I've had.bloods taken and a chest x-ray (can anyone clarify what the x-ray was for? I stupidly didnt question it at the time!) so God permitting, I'll be starting on this medication soon.

I wanted to ask if anyone has any first hand experience with the drug, and what can I expect in terms of efficacy, side effects etc? The doctor gave me some literature regarding the drug, but I'd be reassured to hear more from anyone who's been prescribed this.

Thanks again to all those that have offered advice so far!

Just to add that sadly my psoriasis is notably worse than it was when I started this thread. I'd estimate that 80 percent of my legs and feet are now covered.

I'm glad you've been seen relatively quickly. I missed out on cyclosporine because I have a vague feeling it's not good for joints and my treatment is via rheumatology primarily. I think the chest x ray will be for TB though - you definitely have to have that prior to biologics because the meds surprises your immune system so there's a risk if it's lying there hidden, it will flare up.

No experience of that drug I’m afraid, but a very heartfelt wish that it works wonders for you.