You can't get psoriasis round your eyes, ... - Beyond Psoriasis

Beyond Psoriasis

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You can't get psoriasis round your eyes, says my doc.

Chancery
Chancery

I was told today by my doctor that I don't have psoriatic arthritis because you can't get psoriasis round your eyes. To quote. "in 25 years practice I've never seen psoriasis on the face'. He also said he'd never met a dermatologist who'd mentioned it either. He said it also always presents with scales, but I know that's not true, inverse psoriasis (what I think I may have) looks different. I've been given a rheumatologist referral, but I felt very depressed at being disbelieved right from the outset.

Anyone ever had psoriasis round the eyes? Or anyone had psoriatic arthritis before they developed a rash?

P.S. When I came home I googled images of 'psoriasis round eyes' and the photos that came up looked exactly like what I have... I think it's rare, but I'm pretty sure it can happen. What do you do when a doc outright refuses to believe what you have exists?

35 Replies

Hi, well I haven't had psoriasis round my eyes but I did have it all down my forehead once and in my eyebrows. I was prescribed some steroid cream specifically to use on the face so I'm sure it can happen.

I have mainly scalp psoriasis and have been diagnosed with Polymyalgia Rheumatica although I suspect PsA. I know some people do get PsA before the rash. In fact, my cousin has been diagonosed with it and she doesn't have psoriasis but it does run very strongly in the family.

I presume you have some symptoms so hopefully the rheumatologist will help. I must admit it does feel like banging your head against a brick wall sometimes but apparently PsA is very difficult to diagnose.

Have you checked the NRAS forum as there are some posts on there as it is similar to RA?

Good luck.

Chancery
Chancery in reply to jacdo

No, I haven't. Thanks for the tip. I'm very new to this. I literally discovered it two days before I went to the doc's, so I wasn't as well-versed as I might be. I usually like to be prepared for every eventuality with them, because they always seem to be like this! I know inverse psoriasis is rare, and it's rare to get the arthritis before or without the rash, but it does happen. I'm never sure why docs are so resistant to 'zebras'.

I do have a lot of the indicators of PsA: Joint pain in feet, knees and very extensively in my back. I can no longer walk fully upright and it hurts all the time. I also have tendonitis and confirmed arthritis in my right foot where I have discoloured thickened toe nails. Apparently this is common. I also had uveitis on and off all through 2018 and I've had endless rashes, so I think I have cause to be concerned, but hey, no plaques means no psoriasis!

Thanks, Whaleroad. I've been racking my brains for anyone with psoriasis in the family, but no luck. The only thing I can think of is my father used to have problems with raw splitting fingers on his hands. I remember him rubbing Vaseline into them. He also had a lot of Joint problems. My maternal grandmother also had foot and Joint problems and sensitive skin, so whether I've managed to take the skin condition thing a stage further by combining two sets of faulty genes....!

It was only by accident that I came across an old diary entry from 2018 where I am complaining about having sore itchy eyes that I realised I'd originally given up wearing contact lenses (after 20 years) because I kept getting these eye infections. Sore itchy eyes have now morphed into red panda eyes with red, sore flaky skin round them, but my doc wasn't having that. I explained that my eyes get quite moist behind glasses and combined with vaginal itching/sore area, collar bone (which is rubbed all the time by collars) and my nipple all having the same rash, I thought it might be inverse psoriasis, but it was all too unconventional for him and he put me in my place with the 'I've been a doctor for...' argument that's meant to shut you up.

I had gone to try and get different creams but nope, I had to stick to steroid cream even although it has dangers if you keep using it, which I'm having to. Anyway, hopefully the rheumatologist, when I finally see one, in about 6 months, no doubt, will be better. Feeling very disillusioned with medicine right now - can you tell?

I’m wondering if I have psoriasis at all as I first noticed signs of something wrong when I developed sore, flaming skin around my eyes, back in April. I suspected cold winds as I am a runner. The thing got worse and spread down my cheeks to my lips and mouth. I thought it must be sweat related I still do but the doc says it’s guttate psoriasis

Since then I have a rash all over. I’m covered in it I’ve had pathology done which came back as excema but the skin specialist is sticking with her diagnosis For my face I’ve got hydrocortisone cream but I’ve still got sore, flaking skin round my lower eyelids 😟

Chancery
Chancery in reply to misswobble

Nasty! I imagine sweating and exposure to sun isn't helping it. One of the troubles is rashes seldom look like, or behave how they should. I once had erythema multiforme, from a drug reaction, and had it for a year before my doc diagnosed it. He was only able to do that when a patch developed that was like a target. He was all chuffed with himself too. God knows why, since a) he'd been totally unable to identify it up till then and b) I could have done that myself with Google. Incidentally, the whole time I had it he was completely uninterested. No treatment, no worries, although I was using the drug I was allergic to for about two years..

misswobble
misswobble in reply to Chancery

The GP I saw was very interested and she referred me on very quickly. Medication not working though 🤨

Chancery
Chancery in reply to misswobble

You are privileged indeed. You need to have her stuffed and put in a museum as a rare example of 'a doctor who gives a damn'!

misswobble
misswobble in reply to Chancery

I’d never seen the doc or been to the surgery so it’s not as if i’m a regular 🙂

Tugun
Tugun in reply to misswobble

Hi,

I wrote to you on the other post. Forgot to say that it took a couple of years of gradual improvement before I got fully better and then, when I got careless with my diet and health about ten years after the first episode, it came back. However I'm gradually improving once again.

misswobble
misswobble in reply to Tugun

My diet is really good and I don’t drink at all. One thing I thought might not be helping is that I have a low fat diet, so I’ve started drinking some full fat milk and yogurt.

My eyes are still scabby and I’ve noticed I’m losing my lower eyelashes ☹️

Tugun
Tugun in reply to misswobble

Udo's oil is good to take internally and in Australia we also have Graham's Mega Oil. Both are a seed based oils with a good combination/ratio of Omega 3, 6 and 9. There are probably others about but I only know those two.

misswobble
misswobble in reply to Tugun

ta for that 🙂. I just bought some mixed seeds as I read they’re good for psoriasis. I’ve got some rapeseed oil in the cupboard too. I do take a daily omega 3

Tugun
Tugun in reply to misswobble

Hi - I didn't realise until after I had been taking it that it was important to have the right ratio of the Omega essential Fatty Acids. At present I take two tablespoons of the Mega oil every morning which is (I think) equivalent to 30 capsules of Omega 3. I am quite possibly wrong with this amount but basically taking it as a tablespoon of oil is a lot stronger dose - and cheaper.

Cod Liver Oil is another alternative but you only need 2 teaspoons a day of it. It also contains other vitamins so don't take too much of it.

Google as much as you can so you get an idea of what might work best for you.

Chancery
Chancery in reply to Tugun

That's weird, this last 'attack' of rashes came during a period of me eating a very high sugar diet, and, as I mentioned elsewhere, it seemed to improve when I cleaned that up, but the bugger's back again. Hopefully it's just a little stress flare and it will die down again. However, back on the hydrocortisone. Well, at least I know it's not just a diet issue, so I can stop blaming myself! Disappointing though....

Tugun
Tugun in reply to Chancery

Hi,

I also had to clean up my diet. It helped but the Omega 3 and other supplements proved to be the extra boost I needed. I believe an alkaline diet is said to be good and there is a lot online now about looking after the gut bacteria (as in intestines).

Chancery
Chancery in reply to Tugun

Oh the gut, it's the bane of my life! I have IBS and since I started eating healthy my gut has got more and more bloated, sorer and sorer and I can hardly stay out the toilet! I'm just about to give up eating fruit in the hope that that might improve things a bit. I always think it's blackly funny that eating a box of Magnums a night gives me less of a sore stomach than half a mango!

Tugun
Tugun in reply to Chancery

Totally agree. There is a lot out there now on the gut microbiome which you would probably find very helpful and might give you some answers.

Riverchick
Riverchick in reply to Chancery

I’m doing the low fodmap diet at the moment , it sounds like it might be worth you speaking to your dr re seeing a dietician . It’s worth a try , look into it.

Chancery
Chancery in reply to Riverchick

Thanks, Riverchick, but my 'dieting to save my health' days are over. I did the FODMAPS diet, a few years back now, and it was very good for settling my IBS, but of course, as soon as you go back to 'ordinary' food you have to contend with the same problems again. I'm too old now to believe diet is going to fix my health problems - they're too complex (not mine - everybody's!) to be so easily solved, unless you have coeliac disease, of course!

I am just reading this, and it makes me so mad that a doctor would tell you that. I have had severe psoriasis for 55 years. Having eye psoriasis impacted my daily life more than anyone could ever imagine. My eyes would be scaly with scabs, and the skin would crack and bleed. My most memorable moment was going to get glasses and the doctor helping me loosen up flakes to he could check my eyes.

Chancery
Chancery in reply to dtalbert

You poor thing, that sounds horrible. In fairness to my doc, I was claiming it was inverse psoriasis, which of course looks different. I've cleaned up my diet recently and the irritation round my eyes has improved. Of course, the weather has also got colder, so if it was being caused by heat/sweating/sun then that might account for it. I've got a rheumatologist's referral but by the time I actually make it onto the waiting list (I'm on a waiting list for the waiting list!) there will be no sign of anything, as it will be the dead of winter. Or later. So that will be yet another sceptical and dismissive doctor. I'm sure they do a course in that medical school....

dtalbert
dtalbert in reply to Chancery

I'm okay now. I have been on a biologic for almost 20 years. I know all about those waiting list; it could be months before you get an appointment. I have lost counts of how many doctors who I have seem over the years. I actually had one tell me I have no idea what to do for you!!! Keep your head up.

Chancery
Chancery in reply to dtalbert

Well, at least that was an honest doc. Most of them would rather blame you and infer you are imagining it than admit they haven't got a clue!

That is absolutely true.

I hate it when that happens. Also some people do get psoriatic arthritis without first getting the rash.

What do you do? Find another doctor. At least you have a referral so hopefully the specialist will be able to inform the doctor. However I have discovered that when they like to make such quick and set diagnoses, they continue to do so and are not usually worth your time.

Chancery
Chancery in reply to Tugun

I went a stage further, Tugun, and changed my docs. A major pain but I was so fed-up I felt I had nothing to lose. We'll see though!

Hello Chancery, as soon as I read your post I was delighted, I know that sounds daft but believe me this is me. I was diagnosed with PA about 5 years ago, but I did not have psoriasis. However it is in my family. After trying numerous meds over a year or two not very successfully, we found that having depo injections twice a year worked really well for me. As time went on my eyes became itchy and dry skin and I thought this must be the psoriasis starting, went to the GP who said the same as yours told me to put Vaseline on. Then it appeared under my arms. When saw my Consultant he said yes is was. Now as my injections wear off it all starts to come back. I am suffering now my eyes are sore with dry skin, it is on my forehead, my PA is really bad, such pains but the good news is I am due my injection tomorrow, by the weekend it will have all gone. I feel I am lucky at the moment and getting away with it being not as bad as it could be. My consultant said he is happy for me to have the injections for another couple of years then we may have to think again, I am dreading that. I hope you manage to get sorted out.

Chancery
Chancery in reply to Tikaneko

I had it under my arms about 20 years ago (coincidentally when I first started having joint problems) but I've never had it since. However these eyes rashes, which started about the same time, come and plague me with increasing frequency. I cleaned my diet up a few weeks ago and it seemed to improve everything, until yesterday when the eye rash came back in one eye and right round my collar bone - with a vengeance. Curse it!

Tikaneko
Tikaneko in reply to Chancery

Strangely I only had it in my arms pits once. I know this sounds awful but it is so comforting to realise your not on your own and others are out there with the same issues. Take care xx

Chancery
Chancery in reply to Tikaneko

That is strange! We've possibly discovered a new form of psoriasis! Or it has found us...

Well I had my 6 monthly depo injection today and luckily the GP who did it used to work in rheumatology. I told her that the skin around my eyes was starting to break down again itching etc. What did she say, that’s your psoriasis ill give you some cream. Who would have thought a breakthrough with the GPs.

Chancery
Chancery in reply to Tikaneko

I find that reassuring. I'm hopeful that means when I finally see a rheumatologist s/he won't dismiss me having rashes around the eyes, collarbone and vaginal area as being irrelevant.

dtalbert
dtalbert in reply to Tikaneko

This is amazing!! There are doctors that know what they are talking about.

Hi Chancery,

So in 25 years of medicine he thinks he's seen everything! How amazing! Pity he didn't do further research and then then he would have discovered something that he has never seen.

I had some some of the various psoriatic rashes ( inverse came first after a bout with scarletina). A couple of years after the rashes went, I started to develop the psoriatic arthritis. I had overworked and was run down. There was no rash at the time but as the arthritis got worse the rash came but not a lot. As I got better I lost the rash but I am still battling the arthritis - hopefully I am winning the battle.

Over the years I have found that certain dogmatic doctors don't like to be proven wrong and will come up with all sorts of ridiculous answers to explain why their initial diagnosis was right. I no longer try to work with these doctors. They are not worth your time or your angst. There are doctors out there who are either more knowledgeable or more willing to do the research. If your doctor proves to be unhelpful, then find another doctor.

Hi: I get psoriasis on my face, especially in my eyebrows, even though I've had physicians tell me that it's impossible. A gentle oil that works for me is called "Skin Relief & Support" by a company called Miracell out of Utah, USA. I order mine on Amazon...no script necessary. Might be worth a try if you still are still struggling with this form of psoriasis. My dermatologist doesn't want me to use any steroid creams on my face...your skin in thinner on your face and apparently the long term use of steroid creams can thin it even more.

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