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Psoriasis -advice before GP appointment

63 replies

artishard · 12/03/2023 11:19

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.

Psoriasis -advice before GP appointment
OP posts:
NeverDropYourMooncup · 28/07/2023 10:03

The chest x-ray is standard with medications like this (and methotrexate, biologics, etc) because if there is undiagnosed TB infection sitting dormant in the body, the damping down of the immune system can allow it to reactivate. If it had showed up, the treatment would have been around six months of antibiotics therapy to clear it before trying again.

I don't have experience of it myself, as my allergies made it inappropriate.

artishard · 28/07/2023 20:30

Thanks for the clarification all! Just awaiting the call from the hospital now for the go ahead. Sporting a fantastically large bruise from my blood tests- it felt like the phlebotomist was digging around in there for an absolute age! I'm generally ok with such things but it got to the point of physical discomfort. Hey ho, all for the greater good in the end I suppose! 🤷‍♀️

OP posts:
NeverDropYourMooncup · 28/07/2023 21:09

artishard · 28/07/2023 20:30

Thanks for the clarification all! Just awaiting the call from the hospital now for the go ahead. Sporting a fantastically large bruise from my blood tests- it felt like the phlebotomist was digging around in there for an absolute age! I'm generally ok with such things but it got to the point of physical discomfort. Hey ho, all for the greater good in the end I suppose! 🤷‍♀️

I normally find that telling the phlebotomist I'm on steroids/have been recently makes them less stabby.

Although I'm so used to it now, I tell them what the best vein is and will bring it up myself (just a light, tickly stroke of a finger does it) - and I'm confident in saying what gauge I need/tell them it's gone through and through and could they start again, please on the rare occasion it isn't straightforward and painless.

Takeitonthechin · 29/07/2023 22:46

I cut out
Dairy
Gluten
Sugar
Sweetners
Nightshades... it eases

Sillymummies123 · 01/08/2023 22:08

Oh bless you...

I have psoriasis (and am a medic, but anything and everything I say is based on my experience of psoriasis as a patient as I am not remotely near being a dermatologist) and I absolutely feel for you. Guttate can be so distressing and I've suffered for over a decade.

I've recently started acitretin as I have been sterilised so no chance of kids - was the pregnancy thing in anyway connected to you not being a suitable candidate for methotrexate? Either future or planned?

Different dermatologists seem to have very different approaches to systemics... My current said she wouldn't wish cyclosporin on her worst enemy (of the 3 biggies), but others swear by it.

Most decent dermatologists see systemics (including cyclosporin) as a necessary hurdle to accessing biologics which have much better QOL and clearance. Did you discuss that at all? When I was given acitretin she basically framed it as "get it done, review in 4 months, then onto biologics if not clear".

One thing that actually resolved the worst of my psoriasis which covered my lower legs entirely: enstilar sprayed literally all over, wrap tightly with clingfilm, go to bed and remove In the morning. Repeat nightly for a few days, then every other night, then once or twice a week on an ongoing basis. Obviously for a million reasons you can't wrap your whole body up, so select specific areas that cause you grief to treat this way. Maybe tackle them one at a time.

artishard · 07/08/2023 03:21

Sillymummies123 · 01/08/2023 22:08

Oh bless you...

I have psoriasis (and am a medic, but anything and everything I say is based on my experience of psoriasis as a patient as I am not remotely near being a dermatologist) and I absolutely feel for you. Guttate can be so distressing and I've suffered for over a decade.

I've recently started acitretin as I have been sterilised so no chance of kids - was the pregnancy thing in anyway connected to you not being a suitable candidate for methotrexate? Either future or planned?

Different dermatologists seem to have very different approaches to systemics... My current said she wouldn't wish cyclosporin on her worst enemy (of the 3 biggies), but others swear by it.

Most decent dermatologists see systemics (including cyclosporin) as a necessary hurdle to accessing biologics which have much better QOL and clearance. Did you discuss that at all? When I was given acitretin she basically framed it as "get it done, review in 4 months, then onto biologics if not clear".

One thing that actually resolved the worst of my psoriasis which covered my lower legs entirely: enstilar sprayed literally all over, wrap tightly with clingfilm, go to bed and remove In the morning. Repeat nightly for a few days, then every other night, then once or twice a week on an ongoing basis. Obviously for a million reasons you can't wrap your whole body up, so select specific areas that cause you grief to treat this way. Maybe tackle them one at a time.

Thank you for this thoughtful and informative response! I apologise for taking so long to respond. The dermatologist advised, after consultation with the senior consultant that my alcohol consumption is currently too high for me to be a suitable candidate for methotrexate, presumably due to the notable strain the medication can exert upon your liver. As an aside, I'm well aware that excessive alcohol consumption often exacerbates psoriasis, and have cut back considerably alongside other lifestyle changes!

I am child free by choice and plan to remain so. I was asked my my derm if children were on the cards in the foreseeable future- I said no, acitretin was never mentioned as an option however. She did allude to the fact that cyclosporin would be a temporary medication before potentially moving on to 'something else'- filling in the gaps and from my research, presumably she could only mean biologics?

Anyway, I'm on day 7 of cyclosporine now-175mg in total daily. No noticeable side effects which I'm obviously thankful for, but similarly no change in the P. Saying that it doesn't seem to have worsened. Guess its just a case of being patient and hoping for the best!

OP posts:
Sillymummies123 · 07/08/2023 06:53

That's great that you have no side effects.

Acitretin is harsh on the liver too, and less effective than cyclosporin and methotrexate.

Now that you're on this path, should you eventually choose to, biologics will eventually come your way. For the vast majority of people they are the most effective with far fewer side effects, because the immunosuppression is more targeted / it doesn't hit all cells like methotrexate / doesn't downregulate T-cells en masse like cyclosporin

Horrible disease isn't it. I'm on my way to.biologics too (I opted for acitretin as my stepping stone because I work with sick people and have a 1 and 3 year old so I feared I'd be constantly terribly ill with methotrexate etc.

One word of advice I wish someone had told me.early on - beware psoriasis forums if you ever approach them. They naturally attract those with severe, treatment resistant psoriasis and can give a hugely negative spin on treatment and prognosis.

Take care!

NeverDropYourMooncup · 07/08/2023 12:38

artishard · 07/08/2023 03:21

Thank you for this thoughtful and informative response! I apologise for taking so long to respond. The dermatologist advised, after consultation with the senior consultant that my alcohol consumption is currently too high for me to be a suitable candidate for methotrexate, presumably due to the notable strain the medication can exert upon your liver. As an aside, I'm well aware that excessive alcohol consumption often exacerbates psoriasis, and have cut back considerably alongside other lifestyle changes!

I am child free by choice and plan to remain so. I was asked my my derm if children were on the cards in the foreseeable future- I said no, acitretin was never mentioned as an option however. She did allude to the fact that cyclosporin would be a temporary medication before potentially moving on to 'something else'- filling in the gaps and from my research, presumably she could only mean biologics?

Anyway, I'm on day 7 of cyclosporine now-175mg in total daily. No noticeable side effects which I'm obviously thankful for, but similarly no change in the P. Saying that it doesn't seem to have worsened. Guess its just a case of being patient and hoping for the best!

It's pretty easy to just pack up drinking and switch to soft/AF drinks, especially as it opens up your treatment options so much. Once you basically don't drink, the occasional one doesn't carry risk of harm with it.

Thinking about it, DP is unmedicated beyond occasionally using some of my steroid creams, but I don't think there's been more than a two pound coin sized patch on him anywhere since he stopped drinking as part of wanting to lose some weight.

broodyat39 · 07/08/2023 12:58

Hi I noticed a massive improvement in my psoriasis when I started taking milk thistle supplements

artishard · 13/08/2023 23:40

Well I'm almost 2 weeks in and have seen a noticeable reduction in the redness of my plaques all over. My arms actually feel smooth again, and the texture has improved noticeably across the majority of my body! Also no itchiness at the moment, which is greatly appreciated. I have a great deal of hypopigmentation though. Presumably this will fade in time, but if anyone has any tips to help the process along they'd be greatly appreciated!

Getting my bloods done tomorrow so fingers crossed the cyclosporin has had no adverse effects. I'm hopeful that the improvements will continue.

OP posts:
Sillymummies123 · 14/08/2023 06:44

That's really great to hear! Is it hypopigmentation where psoriasis has faded or elsewhere? The former is normal and a bit of sun and Time will resolve it.

How do you feel in of yourself on the meds?

glassconcreteandstone · 02/11/2023 08:00

OP here again, NC for unrelated reasons. Almost using this thread as a journal at this point I think. Thanks again to everyone who's advised so far!

Soo basically I started on cyclosporine back in July I think? It was doing the job, patches fading, basically no itchiness or flakes! I had an initial six weeks worth of Neoral from my dermatologist, who advised me that if I hadn't heard anything around the 5 week mark regarding my next prescription I should contact the hospital. Visited the hospital every fortnight for my bloods during this period as advised.

Ended up that after my 6 weeks of cyclosporine there was no word from dermatology regarding my repeat subscription, cue a series of phone calls over a week or so in which time my psoriasis came back with a vengeance. Eventually got an appointment 2 weeks ago today with the cyclosporine nurse- apparently due to a backlog of availability in the clinic I'd somehow been missed out?

I've been back on neoral now for 2 weeks, 200mg a day. It's a lot better than this time a fortnight ago, but at that point I couldn't even bend over without wincing with pain. Bit pissed off at the situation but still grateful for the treatment I've had so far! Hopefully onwards and upwards 🤞

glassconcreteandstone · 26/02/2024 03:23

So, continuing my journal... 18 weeks into my consistent prescription of cyclosporine and it's been miraculous. I barely have a visible patch of psoriasis, apart from under my boobs (think it's inverse?) Which seems particularly hard to shift. I forgot it was such a blessing to have clear and healthy looking skin! I know cyclosporine is a short term option though - my blood tests have been fine so far, I did get a telling off at my last hospital check up tho because I was so heavily dehydrated when giving a urine sample 😅

I'm aware that this isn't a long term solution though! Does anyone have NHS experience of the process? Worried I'll become ineligible for the drug at some point in the near future with no back up plan, barring an inevitable wait for biologics. 😬 If you're still about, your advice was invaluable! @sillymummies123@neverdropyourmooncup

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