Psoriasis

[Scorpihoe]

Apart from no change in my skin it’s been fine. I’ve been very lucky to not have any side effects. Which I’m gutted about because it would’ve been perfect had it of made any changes to my skin! I’m due a review in the next week or two so I’ll see what the next step is hopefully.

thank you, good luck with your review! I know how annoying it is to get your hopes up on something and it doesn’t work

 

[Bae56]

I’ve tried eumovate via my Gp it does seem to help, I have to be really careful using it eg using gloves I got some on my face last year and it caused some kind of allergic reaction.

Wow really? Just shows you how unique everyone's skin is. I always found it to be gentle. That's the only thing that doesn't make me more itchy.
I have eczema and psoriasis. It makes you feel horrible doesn't it. I have chunks of hair missing & can't wear my wedding ring because my hands are too sore. I don't know if anyone else feels like this but now I just think what's the point in doing anything to make myself look or feel nice when I'm so itchy, red, swollen & flaking

 

[OutrageouslyScarlet]

I've had it since age 9. Stress and change of temperature ( hot and cold) seem to be my triggers. Elbows and huge patches on lower legs are my thing, they have had many periods of becoming weepy and unbearable with itching. I'm currently totally free of it for the first time in years. It's so strange to have clear elbows! No patches on my legs. Even my scalp is good. All I am doing is I take a monthly Doctor subscribed vitamin D capsule and I quit my miserable stressful job. I am careful not to shower daily or over-wet my skin and I have noticed that moisturising has never ever helped. I have just read those articles about dry treatment with great interest. Steroids have worked in the past but only very briefly. It's an absolute shit of a disease!

Awful isn’t it. I started age six and it really ruined a lot for me growing up. I’ll try the vitamin d

 

[OutrageouslyScarlet]

Do you guys often feel self conscious in hot weather, and wearing short sleeves? I’m trying to overcome the feeling because I know that fresh air and sun is good for my skin. But, even though my eczema isn’t really noticeable I still feel like people will look at me

I do yeah, I’ve had it most of my life. I’m 31 now so I care a little less but I’m still very aware of it. And it has a huge impact on what I wear etc sadly.

 

[Snippysnips]

Hi, new to this, sorry if its been posted, I've had it since a baby, my arms, legs, scalp, nose etc haven't had flare ups recently but as a kid it was crazy bad to the point people would constantly ask if I had fallen an hurt myself, one day a elderly woman approched my mum an told her what would help, it was like one of those old wife tale things, we tried it an mines cleared up super well, didn't 100% go but at least for me it made a super huge difference, it was putting oats in a cloth an tying it round the tap like a little bag an letting the hot water flow through it that did it for me

 

[Facehugger]

My nan was covered from head to toe. Dad had it on his scalp, chest, knees & in all his hairy bits (sorry if TMI).

I've escaped in the main, but my elbows are awful. Ive tried all-sorts but when they're really bad I put some O'Keefes working hands cream on a dressing, keep it on for 3 days or so, and when I take it off it's all healed up. Till the next time!

 

[Bae56]

I swear by eumovate but it’s deffo stress related. It took so long to be diagnosed - I’m soo pale sun beds aren’t really all option

I second this. Eumovate is the only thing that actually works for me, even the over the counter one. That cream is like magic. Everything else only works for a short time.

 

[chorizorice]

I’m really glad I found this thread..
I have had it since I was 17 I’m 23 now. I ditched steroid cream after the first two years- I had to constantly reapply them otherwise it would get worse, and it the areas it did heal it discoloured my skin. Since then I’ve use all natural moisturisers. I had a brief period where emu oil (I know.. I have tried everything and it’s gotten strange haha) almost got rid of it completely for a couple weeks. Idk what it was because it reappeared after that. Anyway I have smaller patches on my head around around my body but large patches on my ankles, elbows and knees for the last 5 years. I stopped drinking a week ago and I’m going to keep that up for a month and see how it helps. Sending love to everyone here and I’m sorry if any of you feel as shit as I do about it.. I hate meeting new people if my arms or legs are out because I feel ashamed. So silly I know

 

[Clickbait]

@TheDragonWithAFlagon can I ask how you were diagnosed with psoriatic arthritis and where you are affected? I started having knee pain and limited movement in my knee a few years ago. I’ve never been given any conclusive explanation or treatment.

I developed psoriasis after getting a bad bout of tonsillitis 15 years ago. Looking on the NHS website my knee pain could be this - it hasn’t been linked by my doctor, nor have I had a questionnaire to fill out at any point. I have no faith in my GP to do better after a couple of failings in my treatment (and I’ve only seen the doctor 3 times in 9 years!) but I’ll be moving soon so want to try again with a new practice.

 

[Blairr]

has anyone tried methotrexate injection or tablets? I’ve only just started considering it bc I have tried everything for the last seven years now and I’m sick of it affecting my mental health so much, would love to know if anyone has experience with it xx

Yes! I’ve had both. I was on them for nearly 7 month with no effect. I’m now on ciclosporin and noticed a difference within days!

 

[Makaraka]

I’ve had psoriasis since was a child, I used to have to be wrapped in steroid cream and bandaged up every night, I was undiagnosed for a long time before I went privately and had a biopsy. For a good few years after the first treatment I didn’t suffer to badly.
It would sporadically come on and I’d be able to treat it with an odd sunbed but also I was having holidays 2-3 times a year too so as you’ve all said the sun helps!

anyway suddenly I had a massive flare up I was covered head to toe again, my doctor put me on creams that didn’t help.
Deciding enough was enough I searched for a doctor that specialised in dermatology and luckily one of the best in my area actually worked in my doctors surgery
Straight away she looked and prescribed me with the best treatment I’ve had!
I’m on enstiller which is a foam spray, have to use adex gel as a moisturiser aswell as using it in the shower.
There’s a couple of other creams I have to use in between too as the enstiller can only be used for 2-3 weeks and then you have to have a break from it but it’s the enstiller that has worked the best.

 

[Blairr]

oh shit, not nice side effects I’ll keep that in mind but happy it worked for you for a bit :/ hope you get biologics soon. Melts didn’t work at all for you? Do you mind me asking how severe your psoriasis is? thanks so much for your response xx

I’m guessing you mean methotrexate not melts but no it didn’t do a thing I was switched to injections and up to the highest dose and still nothing. I mainly have it on my face and scalp and a few patches on the rest of my body x

 

[chorizorice]

Yes! I’ve had both. I was on them for nearly 7 month with no effect. I’m now on ciclosporin and noticed a difference within days!

Thank you for responding! I’ll have a look at ciclosporin now xx

Do you guys often feel self conscious in hot weather, and wearing short sleeves? I’m trying to overcome the feeling because I know that fresh air and sun is good for my skin. But, even though my eczema isn’t really noticeable I still feel like people will look at me

Yes I do, I really struggle with wearing short sleeves or shorts. I recommend spending a lot of time at home idk if you have a garden in your shorts or skin out tanning, and if you don’t go to a local park with just your arms out and try and combat feeling uncomfortable. When you’re somewhere less busy it becomes easier to feel less insecure. Sometimes I feel like getting outside somewhere not busy and having my arms out prepares me for feeling less self conscious in busier places if that makes sense?As for when I go out, like into town i love wearing trousers that are like linen material and really breezy and shirts on top or a cropped top with long sleeves. Not really about how to get sunshine on skin and kinda unrelated but that’s how I feel like most confident if I was going to a a really busy place in summer good luck babe x

 

[~vix~83~]

I have some kind of psoriasis I can’t say it let alone spell it... has Rosetta (?) at the end,
I take a allergy tablet at night to stop the itching, decaf tea from the afternoon which helps. It’s at night I itch the most. I also have restless legs so I’m a itching kicking donkey so my husband says lol

 

[Snippysnips]

Glad I found this thread now and shared it if you do try different oats please let me know how you find it an if there's a difference, will be interesting to know how different oats are

 

[fmmac]

The psoriasis on my face has gone crazy over the past year, particularly round my nose and chin. I'm not sure if wearing a mask has made it worse. I found this balm really helped: https://www.lyonsleaf.co.uk/Calendula-and-Marshmallow-balm

It hasn't shifted the psoriasis but it's really helped with flakiness and the redness has calmed too.

 

[Curly Top]

How strange as when you look at it it’s clear that there is a bubble under the skin. I guess by the time someone has gone to the doctor it’s gone from the bubbles to the skin cracking and starting to peel. It looks so innocuous to begin with and then...

Yes exactly. At the bubbles stage it's reasonably obvious what it is - if you have a clued up GP. Once it goes past that stage it resembles any other type of skin disease. I did go at the bubbles stage as it looked weird to me and was very itchy.

 

[TheDragonWithAFlagon]

@TheDragonWithAFlagon can I ask how you were diagnosed with psoriatic arthritis and where you are affected? I started having knee pain and limited movement in my knee a few years ago. I’ve never been given any conclusive explanation or treatment.

I developed psoriasis after getting a bad bout of tonsillitis 15 years ago. Looking on the NHS website my knee pain could be this - it hasn’t been linked by my doctor, nor have I had a questionnaire to fill out at any point. I have no faith in my GP to do better after a couple of failings in my treatment (and I’ve only seen the doctor 3 times in 9 years!) but I’ll be moving soon so want to try again with a new practice.

I had a GP who saw a full blown Psoriasis flare covering my entire body and argued with the Rheumatology department when they suggested it might be fibromyalgia rather than the joint issues I'd had since childhood. PsA often affects fingers and toes making them look like little sausages.

I'd definitely try to see a new GP and ask about referral, though. Thing is that your knee pain could be biomechanical, a cartilage issue, wear and tear, weakened leg muscles, iliotibital band problems, a need for orthotics to prevent pronation of your foot putting pressure on the knee or any number of things other than PsA - but a blood test with CRP/ESR could identify if there's any inflammation that might/should trigger a referral to dermatology/rheumatology.


If you have the funds, I'd think that it would be a good use of money to see a sports physio privately, as they'd be able to see mechanical issues and be able to say whether they think it's an inflammatory issue and therefore out of their remit - and that could give more weight to a request for referral.

 

[Tots]

I’ve tried this but mine is mostly facial and scalp psoriasis and I ended up with a raging ear infection from trying to wash the enstilar out my hair it’s meant to be amazing for the rest of the body though.




I’m 3 months into methotrexate and no change so far :-(

I too have psa and scalp psoriasis plus other issues, been on methotrexate for 4 years......it’s helped me so much.
All dose changes including starting it initially take 3 months to kick in....,how are you finding it now?

 

[OutrageouslyScarlet]

Thank you for your reply. So in your case it is something that flares up and you have visible swelling?

For me I have no swelling and the problem has been constant (with varying levels of pain and discomfort) for 4 years. I wasn’t examined by my GP but was sent for an X-ray which was inconclusive. I was told to self-refer for physio which ended up being a phone call with a physio who couldn’t confirm what it was (no shit Sherlock) and emailed me some exercises which “may not cure it but probably won’t do any harm”. At no point did anyone even lay a hand on me to try and diagnose a problem.

I paid for a private osteopath which didn’t make a huge amount of difference but was quite relaxing. He suggested I’d need an MRI to really see what was going on inside my knee - could be a Baker’s Cyst for example.

I compare that to my friend who had a niggle in her knee and within 6 months had been given: an X-ray, consultation with Consultant, steroid injection and fortnightly sessions with a physio.

For people with LTCs it is so much of a postcode lottery as to the treatment and attention you receive and that is vastly unfair. Looking forward to a reset when I move.

I did all the above, as I say was a long process, I had X-rays and an MRI, all the MRI found was my knee cap is slightly higher than it should be.
I only speak from experience in that o only get flair ups and winter is the worst time for me as the damp gets into my knee and it’s aches. Since having my knees drained and a steroid injection a few years ago it’s been a lot better. Perhaps ask for a blood test? I think that’s what confirmed mine. It is all luck though if I hadn’t had that GP I would have continued to fight. I was sent to physio which took weeks to be seen (prior my diagnosis) and they said this is ridiculous you are 23 they need it i find the problem. Sadly it will be a long journey for you too by the sounds of it x