I have had problems with the skin on my feet and my toe nails for a while now and during a discussion on the EM discussions I mentioned this to someone. She thought of PsA and I sent her photos by email. After seeing them she confirmed what she thought. Today my doctor has been to see me and so I mentioned it to him. He looked at my skin and declared it was just dry skin nothing to bother about, even though I use cream twice a day. Then I showed him my toe nails and his answer was lots of people have nails like that, end of story and he dismissed the possibility of PsA. I also have some ulcers on my feet. I have attached a couple of photos one of the skin and the other of my toe nails. Could someone comment as to whether they think my doctor is correct or is it in fact part of PsA.
80-foot.jpg (27.8 KB) 81-toes.jpg (199 KB)
That's the problem with psoriasis. It can be very tricky because there are several forms which manifest in many different ways and can look very similar to other skin conditions.
Since childhood I have been seen by countless GP's and at least two dermatologists for my many skin issues and not one has diagnosed psoriasis. It took my rheumatologist searching for answers to my joint pain to see a classic plaque on my knee and that was the light-bulb moment ... since then everything else, including my atypical nails, just fell in to place. Since diagnosis I've seen a further two dermatologists (for other things) when I've had very little or small amounts of unusual skin activity and ended up discussing psoriasis with them and they've taken a look and said "possibly, maybe, not sure".
Nails are worth the doc taking a sample and sending for fungal culture as that seems to be the most frequently quoted explanation for what are ultimately psoriatic nails.
Dermnet is a good online resource.
Don't give up at the first hurdle, ask/show your rheumy when you next visit with him and any other doc you see. It is perfectly reasonable to ask, say you'd heard about psoriasis and psoriatic arthritis and so many of the symptoms rang bells with you (especially because you cannot get any improvement in/healing of your skin from simple emoilients) that you wondered if this could be possible for you.
Actually, what I forgot to say was that I also got a photo off Dermnet doing an internet search of nails and showed him this, but it didn't make any difference. That is my plan to ask my rheumy who I see on the 23rd July. I also asked would it be worth checking my Vitamin D levels as I am never outside these days, but he said I should get enough from my diet. He was having an off day I think, he does tend to be a bit like that, maybe he has been under stress due to shortage of doctors or something.
Ah, you'll probably get the usual script about the cost of vitamin D tests!!! However, for about £25 you can order a prick blood test kit from the Department of Clinical Biochemisty at Sandwell & West Birmingham Hospitals. Easy peasy and they email the result to you in just a few days.
'Script' as in narrative not prescription.
Funningly enough I have just been looking up online for home tests I found one on Amazon but it was ver £40 so your suggestion sounds better
Jules G said:
Ah, you'll probably get the usual script about the cost of vitamin D tests!!! However, for about £25 you can order a prick blood test kit from the Department of Clinical Biochemisty at Sandwell & West Birmingham Hospitals. Easy peasy and they email the result to you in just a few days.
Yes, genuine bona fide science!
Sheltie, this particular place is profusely populated by plenty of PsA peeps who not only appreciate aliteration, but who had their psoriasis mis- or un-diagnosed for years. I would not presume to know what’s wrong with your feet or your toenails, but they certainly look bad enough to warrant a good close look by a dermatologist. Ulcers on your feet? That is SO not good, whatever the cause. I don’t know what that is on your feet, but I do know that it’s not normal.
A question for you: if you hold your fingernails up to the light so that you can examine their surface, is the nail surface smooth? And are any of your fingernails lifting or discoloured?
For decades I complained to my GP about my very itchy skin. The answer was “moisturize”, cool showers, unscented products, etc. That didn’t help, so my assumption was that I was either using the wrong lotions or not moisturizing often enough. I gave up complaining. After all, the chairs in the doctor’s office were filled with truly ill people. Who am I to keep bugging the GP about itchy skin? Right? For years I had toenail “fungus”, which she treated several times with prescription meds, unsuccessfully. I gave up. Who am I to think that my ugly nails warranted expensive attention? I got over it and covered the nails with polish. That worked until the nails started crumbling.
Eventually, on finding erosions in the joints of my mid-feet, a rheumatologist looked at my nails and sent me to a dermatologist. Within ten seconds of starting the physical exam, Dr. Derm took one look at my fingernails and said “Yes, you have psoriasis”. The itch? Psoriasis. The toenail “fungus”? Psoriasis. And then she found some small patches of plaque that I’d never paid attention to. Psoriasis. She asked about family skin problems and I described my late mother’s skin issues, mostly very itchy, scaly “eczema” (according to her GP) in her ears. Dr. Derm declared that, without a shadow of a doubt, to have been psoriasis too. Then I asked her about the itching, burning, peeling patch that I sometimes got “down there”. Peri-anal inverse psoriasis. My Psoriasis wasn’t extreme at all – my GP had blown off my relatively minor symptoms for years, and I’d tried hard to ignore it – but the psoriasis that I had was enough to nail the PsA diagnosis. And by the way, severity of skin disease does not correlate with severity of joint disease. I am mild in one and severe in the other.
Getting a solid diagnosis is the key to finding treatment that helps. You need a doctor that really knows their stuff for that. Unfortunately, for many of us, getting to that doctor required us to start taking matters into our own hands, educating ourselves, and then strategizing to get to the right doctor(s). Please find a way to get to a dermatologist, Sheltie. I’m guessing that asking your rheumatologist is a good place to start. The very best of luck with this.
Hi Seenie
I will reply more tomorrow. Feeling pretty rough just now and am on my iPad which I am not good with. I am going to bed now, but thanks for your long reply.
Seenie said:
Sheltie, this particular place is profusely populated by plenty of PsA peeps who not only appreciate aliteration, but who had their psoriasis mis- or un-diagnosed for years. I would not presume to know what’s wrong with your feet or your toenails, but they certainly look bad enough to warrant a good close look by a dermatologist. Ulcers on your feet? That is SO not good, whatever the cause. I don’t know what that is on your feet, but I do know that it’s not normal.
A question for you: if you hold your fingernails up to the light so that you can examine their surface, is the nail surface smooth? And are any of your fingernails lifting or discoloured?
For decades I complained to my GP about my very itchy skin. The answer was “moisturize”, cool showers, unscented products, etc. That didn’t help, so my assumption was that I was either using the wrong lotions or not moisturizing often enough. I gave up complaining. After all, the chairs in the doctor’s office were filled with truly ill people. Who am I to keep bugging the GP about itchy skin? Right? For years I had toenail “fungus”, which she treated several times with prescription meds, unsuccessfully. I gave up. Who am I to think that my ugly nails warranted expensive attention? I got over it and covered the nails with polish. That worked until the nails started crumbling.
Eventually, on finding erosions in the joints of my mid-feet, a rheumatologist looked at my nails and sent me to a dermatologist. Within ten seconds of starting the physical exam, Dr. Derm took one look at my fingernails and said “Yes, you have psoriasis”. The itch? Psoriasis. The toenail “fungus”? Psoriasis. And then she found some small patches of plaque that I’d never paid attention to. Psoriasis. She asked about family skin problems and I described my late mother’s skin issues, mostly very itchy, scaly “eczema” (according to her GP) in her ears. Dr. Derm declared that, without a shadow of a doubt, to have been psoriasis too. Then I asked her about the itching, burning, peeling patch that I sometimes got “down there”. Peri-anal inverse psoriasis. My Psoriasis wasn’t extreme at all – my GP had blown off my relatively minor symptoms for years, and I’d tried hard to ignore it – but the psoriasis that I had was enough to nail the PsA diagnosis. And by the way, severity of skin disease does not correlate with severity of joint disease. I am mild in one and severe in the other.
Getting a solid diagnosis is the key to finding treatment that helps. You need a doctor that really knows their stuff for that. Unfortunately, for many of us, getting to that doctor required us to start taking matters into our own hands, educating ourselves, and then strategizing to get to the right doctor(s). Please find a way to get to a dermatologist, Sheltie. I’m guessing that asking your rheumatologist is a good place to start. The very best of luck with this.
Omg your foot and toes look very painful! :-(
Hi Seenie, Just getting round to following on from what you said. Of course it could be a fungal infection, but what annoyed me is that whatever it is the doc just ignored it and didn't offer any help. Actually my finger nails don't seem to be affected, except for the ridges which I believe is down to age. Of course, it's not easy to view my toe nails in detail. I saw a dermatologist at the end of April but that was regarding EM and he never mentioned anything about my toe nails even though they looked like they do now. They were quite black in places at one time, but that was put down to my poor circulation I have secondary Polycythaemia rubra vera (PRV). However, another annoying thing is that because it wasn't primary the haematologist said there was no further treatment required and so I am not being treated for that, hence the reason my ulcers have appeared and are not healing very well.
Seenie said:
Sheltie, this particular place is profusely populated by plenty of PsA peeps who not only appreciate aliteration, but who had their psoriasis mis- or un-diagnosed for years. I would not presume to know what's wrong with your feet or your toenails, but they certainly look bad enough to warrant a good close look by a dermatologist. Ulcers on your feet? That is SO not good, whatever the cause. I don't know what that is on your feet, but I do know that it's not normal.
A question for you: if you hold your fingernails up to the light so that you can examine their surface, is the nail surface smooth? And are any of your fingernails lifting or discoloured?
For decades I complained to my GP about my very itchy skin. The answer was "moisturize", cool showers, unscented products, etc. That didn't help, so my assumption was that I was either using the wrong lotions or not moisturizing often enough. I gave up complaining. After all, the chairs in the doctor's office were filled with truly ill people. Who am I to keep bugging the GP about itchy skin? Right? For years I had toenail "fungus", which she treated several times with prescription meds, unsuccessfully. I gave up. Who am I to think that my ugly nails warranted expensive attention? I got over it and covered the nails with polish. That worked until the nails started crumbling.
Eventually, on finding erosions in the joints of my mid-feet, a rheumatologist looked at my nails and sent me to a dermatologist. Within ten seconds of starting the physical exam, Dr. Derm took one look at my fingernails and said "Yes, you have psoriasis". The itch? Psoriasis. The toenail "fungus"? Psoriasis. And then she found some small patches of plaque that I'd never paid attention to. Psoriasis. She asked about family skin problems and I described my late mother's skin issues, mostly very itchy, scaly "eczema" (according to her GP) in her ears. Dr. Derm declared that, without a shadow of a doubt, to have been psoriasis too. Then I asked her about the itching, burning, peeling patch that I sometimes got "down there". Peri-anal inverse psoriasis. My Psoriasis wasn't extreme at all -- my GP had blown off my relatively minor symptoms for years, and I'd tried hard to ignore it -- but the psoriasis that I had was enough to nail the PsA diagnosis. And by the way, severity of skin disease does not correlate with severity of joint disease. I am mild in one and severe in the other.
Getting a solid diagnosis is the key to finding treatment that helps. You need a doctor that really knows their stuff for that. Unfortunately, for many of us, getting to that doctor required us to start taking matters into our own hands, educating ourselves, and then strategizing to get to the right doctor(s). Please find a way to get to a dermatologist, Sheltie. I'm guessing that asking your rheumatologist is a good place to start. The very best of luck with this.
Well, Sheltie, I’m glad that you’ve been to a dermatologist, but if I were you, I think I’d be asking for a culture of the nail “stuff”. That’s an easy procedure, and if it isn’t psoriasis, then at least you know that.
I know, it’s so difficult to deal with major medical issues, and the trouble is that we have to deal with them and advocate for ourselves and figure things out just when we are feeling low because of the … yup, major medical issues. Do you know anyone – family or friend or acquaintance – who would be willing to strategize with you, and get assertive with your medical carers on your behalf? Sometimes it is helpful to have someone like that with you at appointments. If they have some medical knowledge, so much the better, but the advocate role can also be played by anyone with good, assertive interpersonal skills who isn’t afraid to pull on the bossy knickers.
Take good care of yourself.
No chance! Yesterday I asked my GP for a vitamin D test and he refused. So thanks to Jules who told me about the home kit I have ordered that.
The vitamin D test thing is interesting. I asked my GP for one, and she refused, the reason being that it isn’t covered by our government health care plan at all. The point that she made was that Vitamin D supplements are available OTC, so just to take one and see if it helps. She told me how much to take, I did, and I think it helped. My rheumatologist always confirms that I am taking it. That said, one of these days my curiosity may get the better of me, and I may just pay for a test.
So that’s why he refused so it would have been better if he had told me that. From memory it was only £25 so well worth it. A friend not on here has been telling me for ages to buy some but she wanted to know my levels now then she can work out the correct dose.
Tomorrow I'll get on my main computer and post both my Vit. D results with an explanation about it. I hear on the grapevine that a test via the normal GP route is closer to £300 as it's done by a different methodology .... hence our GP's reluctance unless we are in a high risk group .... which my GP said was people with darker skin tones and indoor lifestyles which naturally fail to make adequate levels of Vit. D. Sorry, I can't do it now but I'm done in for today :-(
Gosh £300 well I should come under the people with indoor lifestyles as the only time I go outdoors is to podiatry or hospital, that’s why my friend thought I might be short of it. That means just from my door to the ambulance and the same home.
When I first showed my rheumy feet and nails she blew it off but did confirm it was PSA for sure. My nails have been horrible since I was pg with my daughter (now 9 yrs) and I had my first pedicure. I always blamed them and thought I had fungus but I don’t. Just got back from camping trip and my feet are so bad with dirt in every crack I didn’t even know was there! Washed and soaked them 3 times and took showers while there but no moisturizer is helping. Needless to say I get it!
I just hope my rheumy man is better than the dermy man as he didn't even comment when he looked at my feet and legs! Granted I went to see him as I think I have EM but it's not difficult to miss the appearance of them. When I first started having problems with my toe nails I also blamed the woman I had to cut my nails! She was really vicious with the nail file it really hurt me and also when I got home I noticed that bits were breaking off, but that's all it was then. Maybe that was the start of my toe nail problems, it's quite a long time ago. Unfortunately, I can't bathe my left ones as I have an ulcer right next to them. It probably isn't helping that I can't do that. When you say no moisturiser is helping do you mean it's better not to put cream on? I just wondered as they keep telling me to make sure I use it twice a day.
Finally getting round to reporting about my appointment with the rheumy man! It wasn’t a great day at all. For a start the ambulance patient transport didn’t arrive here until 15.30 which was the time of my appointment, they had been delayed due to a previous patient. They rang the hospital to warn them. It’s 25 miles to my hospital so obviously I was very late and the ones to take me home where waiting on my arrival so they had to go.
I went in and he was shocked at how much worse I was since he last saw me 6 months previously. I asked if it was possible that I had Psoriatic Arthritis and got a blank look from him, as if he had never even heard of it! I showed him my feet, legs and toe nails and again nothing much was said. I did tell him that I could no longer move my ankles or toes at all. He then sent me for an X-Ray. Even that was horrible as the radiologist told me to bend my ankle so I said I couldn’t that’s why I was having the X-Ray. So, he grabbed my foot just where my worst ulcer is and tried to bend it. At which point I screamed. Then he moved the machine instead of me.
I went back to the rheumy man and he showed me the X-Rays. My left ankle bone he said had fused. So that was the end of it no further comment from him except he would see me in 6 months time.
Then came the fun of waiting for the ambulance to take me home. I asked could I wait in the café as I hadn’t eaten or had anything to drink since lunch and was told I couldn’t as the ambulance men wouldn’t find me. So, I went and sat outside where the ambulances arrive. Two and a half hours later it arrived and I didn’t get home until nearly 20.00. I suppose I should have taken something to drink at least with me but I didn’t think I would be that long.
So, as it turned out a complete waste of time and all it did was make me feel more ill.
I got my Vitamin D results back from the test that Jules recommended and it showed I had a deficiency the result was deficient Total Vitamin D 25.5 nmol/L. A friend knows how to tell what dose I need of the supplement and so I have ordered some online. I am hoping that it will help.
As for my worst ulcer it’s getting bigger and deeper all the time. Not helped by podiatry using the wrong type of dressing and scraping it instead of using the ActiveForm Cool dressings which the district nurses have been using that were actually showing some improvement.
My next hospital appointment is with my renal specialist, who I was sent to because of high blood pressure. I am pinning my hopes on him, as he is absolutely brilliant and doesn’t only know about renal problems. It was only due to him that my adrenal problem was sorted out. He suspected what was wrong on my first visit and did some tests. They were a urine metanephrines test and a dexamethasone suppression test. The lab actually phoned him with the results of the 24 hour urine test rather than write as in their words my noradrenaline level was sky high and my cortisol level wasn’t suppressed as it should have been. However, the endo lot dismissed it and it was 2 years after seeing 3 different specialists that I was finally diagnosed showing that the renal man was correct. I just hope that he knows something about psoriatic arthritis. I would be surprised if he didn’t.