Well, actually I have been paying more attention to my nails lately, and I do have one toenail that seems cracked (not just in one place but many cracks going downwards, and looks a little whiter but that might be because of the cracks). But of course, again, I can't be sure if it is because my toe hits the front of the shoe all the time and that is the reason for it being cracked or if it is something to do with psoriasis. Also, there are formations on both of my thumbs that look like very little oil stains. They are not pits, but rather lumps. They are really, really small and can only be seen in the right light, or I can feel them with the tips of my fingers. Also, my fingernails seem a bit "wavy" to me, I don't know if it is the right way to put it. But as I said, these are not "visible" things, and I can't remember if my nails were always that way.
sybil said:
The only way stress comes into the equation is that stress can trigger both psoriasis and PsA, but that doesn't make either less real! I can't even remember if the rash I had constantly in my armpits for about 15 years was ever diagnosed as psoriasis. And one sunny morning it just went away and has never returned! But did have a little patch on my elbow which of course disappeared before my first rheumy appointment.
It was a funny looking toenail plus the history of rashes that clinched my diagnosis. How are your nails? I think about 80% of people with PsA have some nail changes which may not seem like much but can be helpful diagnostically. Not everyone with PsA has current skin psoriasis.
See, LL, you got us talking about skin. We LOVE talking about skin here!
With all my itchies and fungus-y nails, my GP never considered psoriasis. But at my rheumatology intake assessment, she took one look at my fingernails and said “Psoriasis. You need a dermatologist.” So off I went to the most horrible (but highly competent) woman. She took one look and went on a rant about how family doctors need to stop blowing “toenail fungus” off, because it could be psoriasis, and psoriasis has serious implications. (Like arthritis.) Then she asked about my family history. When I said that my mother didn’t have psoriasis, but she did have an itchy, greasy, scaly rash in her ears that her GP said was eczema, the derm HIT THE ROOF. Apparently, those symptoms are classic psoriasis. She proceeded to lecture me at high volume about GP incompetence and undiagnosed skin disease and how serious the consequences are (using me and my serious joint damage as an example). And she wanted the name of my Mother’s GP … etc etc. She cooled off a bit when I said that my Mom had died the year before. I was SO glad to get out of that office. I was also glad to have a diagnosis. BTW, she found lots of other “evidence” on me, including some very innocuous-looking dry patches on my elbow and one knee. And to think that for years, I thought that was just bad grooming. BTW, while we are talking, there is no correlation between severity of skin disease and severity of arthritis. And somthing like 10% of patients get the arthritis before the skin symptoms show.
Grandma J, I am with you, why feel ashamed? It is not like we choose this, but we have to live with this! And mine was a small patch compared to people having them all around their body, like your legs. I remember I kept pulling my sleeve down to cover it. I felt like everyone was looking at my hand (and actually they were with a weird look on their faces, and when I reached for a handshake I told people it wasn't contagious if we were close or I would just shake hands with my left hand (and I felt it was unappropriate to shake hands with the wrong hand.)
I think we now know more about autoimmune diseases, this is why they are suddenly everywhere. Or maybe it has something to do with our lifestyles, which has especially become very different, faster, more desperate maybe, with poor health conditions in the last thirty years or so (you know, global economical stiuations, their affects on daily lives etc, this is me being a PhD student right now :).
And actually, I have seriously been considering not having kids in the future considering my very fun genes. I don't know, maybe this is just me looking at the empty half of the glass. But is it fair to my hypothetical children to inherit my genes, since I know what they might be getting? I am not a naive twenty year old having children before any of these diseases and conditions, but I know where I stand now. So it is a "choice" I think, that I am up against. And I am a pessimist if you haven't noticed already :)
Grandma J said:
Oh LL--ashamed of the patch on your hand--why are we ashamed? I spent the past 40 years being ashamed and embarrassed of my psoriasis! I wouldn't tell anybody outside the immediate family I had it, and wore long pants all year 'round even when it was 100 degrees F. For many years I'd use tanning beds and sun bathing along with my cortisone creams to clear up and/or conceal it enough so I could feel less embarrassed when we were going on vacation and planning to swim in pools, etc. But the last few years nothing could clear it up--especially my legs. Interesting about the itch and no psoriasis. My skin would usually itch a lot before psoriasis broke out, and the psoriasis itched even more. My theory is that psoriasis/PsA are one in the same--the psoriasis can be under the top layer of skin so that you may not even see it--but you felt it in the form of an awful itch. I did see a dermatologist when mine broke out in my early 20s because it covered about 50% of my body at first.
Now that everybody's talking about having these little patches that aren't dx'd as psoriasis at first, I'm worried about our 2 oldest kids. Our son has had patches that come and go on his face the Dr has told him are seborreic (sp) dermatitis. Our daughter lately has had a patch on her cheek by her ear. I give them my betamethasone to use and it clears up for awhile. Our 3-yr old granddaughter has "eczema"--hmmmm--on her chest, arms, legs and butt. Omg I feel so bad to think they may end up with bad psoriasis and PsA someday!
What is it with all these autoimmune diseases? Do you guys think they're more common now, or is it just that there's more knowledge about them? It seems like every family has a person or several people who have some sort of autoimmune disease! My dad had celiac and looking back, I think the toenail "fungus" that plagued him all his adult life was probably psoriasis. We never could cure it. My one sister had juvenile diabetes--I'm not sure if that's autoimmune. I found out a couple cousins have RA--is that autoimmune? I have quite a huge relation-at least 70 first cousins. So, really, there isn't a large percentage of family with autoimmune disease.
It's just disappointing when one knows that they are passing the genes on and nothing can stop it. It's funny, I was so close to my dad. His toenails were horrible, the--ahem-fungus was so thick. I would work on them for hours about once a month. He'd always tell me not to worry how much I took off--it didn't hurt. He'd give me a dollar for doing it. None of my bros and sisters cared about him as much as I did. Funny how I was the only child who inherited his "psoriasis"! I'm glad I was so close to him and it's not his fault I got an autoimmune disease. But, I somehow feel that I am indirectly responsible for passing the bad gene on to our kids. Actually, they're getting it from both sides because my husband's dad and a couple brothers had psoriasis! :-(
Grandma J, I tried to edit my reply to you but I think something went wrong with my connection. This is what I wanted to say:
I hope everything is ok with your children and your grandchildren. It doesn't necessarily have to turn into something more serious. I believe I inherited this from my mother. She had "unexplained" skin conditions for as long as I can remember as well. But I have PsA and she doesn't. Right now I am scared for my brother for example. But maybe I am/will be the only one that has this condition, although they might have the genetics as well. So, you never know with genetics. This is the tough part about it :)
Grandma J said:
Oh LL--ashamed of the patch on your hand--why are we ashamed? I spent the past 40 years being ashamed and embarrassed of my psoriasis! I wouldn't tell anybody outside the immediate family I had it, and wore long pants all year 'round even when it was 100 degrees F. For many years I'd use tanning beds and sun bathing along with my cortisone creams to clear up and/or conceal it enough so I could feel less embarrassed when we were going on vacation and planning to swim in pools, etc. But the last few years nothing could clear it up--especially my legs. Interesting about the itch and no psoriasis. My skin would usually itch a lot before psoriasis broke out, and the psoriasis itched even more. My theory is that psoriasis/PsA are one in the same--the psoriasis can be under the top layer of skin so that you may not even see it--but you felt it in the form of an awful itch. I did see a dermatologist when mine broke out in my early 20s because it covered about 50% of my body at first.
Now that everybody's talking about having these little patches that aren't dx'd as psoriasis at first, I'm worried about our 2 oldest kids. Our son has had patches that come and go on his face the Dr has told him are seborreic (sp) dermatitis. Our daughter lately has had a patch on her cheek by her ear. I give them my betamethasone to use and it clears up for awhile. Our 3-yr old granddaughter has "eczema"--hmmmm--on her chest, arms, legs and butt. Omg I feel so bad to think they may end up with bad psoriasis and PsA someday!
What is it with all these autoimmune diseases? Do you guys think they're more common now, or is it just that there's more knowledge about them? It seems like every family has a person or several people who have some sort of autoimmune disease! My dad had celiac and looking back, I think the toenail "fungus" that plagued him all his adult life was probably psoriasis. We never could cure it. My one sister had juvenile diabetes--I'm not sure if that's autoimmune. I found out a couple cousins have RA--is that autoimmune? I have quite a huge relation-at least 70 first cousins. So, really, there isn't a large percentage of family with autoimmune disease.
It's just disappointing when one knows that they are passing the genes on and nothing can stop it. It's funny, I was so close to my dad. His toenails were horrible, the--ahem-fungus was so thick. I would work on them for hours about once a month. He'd always tell me not to worry how much I took off--it didn't hurt. He'd give me a dollar for doing it. None of my bros and sisters cared about him as much as I did. Funny how I was the only child who inherited his "psoriasis"! I'm glad I was so close to him and it's not his fault I got an autoimmune disease. But, I somehow feel that I am indirectly responsible for passing the bad gene on to our kids. Actually, they're getting it from both sides because my husband's dad and a couple brothers had psoriasis! :-(
Seenie, I totally agree with that, I'm serious! This is my take on optimists: if they're extremely optimistic, I tend to think they're dreamers and they're not realistic about all the possible outcomes. I'm actually proud to say I'm quite pessimistic. ;-] remember how pessimistic I was about Enbrel-and what a happy surprise I had when it worked so well? You don't have to apologize for that comment! :-)
Seenie said:
Pessimists, LL, only get nice surprises. They are either satisfyingly right, or pleasantly wrong. LOL, I'm not 100% serious.
That's okay. I understand. Not having children yet you might think differently than if you already had kids. Get this one...before I had children I was so afraid to start a family because I just wasn't sure I wanted kids. I am so glad I had them. I didn't know true love and devotion until I had a baby. I was actually worried I wouldn't love a child. I found out I couldn't love anything more! I'm a motherly person and didn't realize that until I had kids. And, as far as their health, we don't know how things are going to play out--anything could go wrong or everything could go right!
ladylazarus said:
Grandma J, I tried to edit my reply to you but I think something went wrong with my connection. This is what I wanted to say:
I hope everything is ok with your children and your grandchildren. It doesn't necessarily have to turn into something more serious. I believe I inherited this from my mother. She had "unexplained" skin conditions for as long as I can remember as well. But I have PsA and she doesn't. Right now I am scared for my brother for example. But maybe I am/will be the only one that has this condition, although they might have the genetics as well. So, you never know with genetics. This is the tough part about it :)
Grandma J said:
Oh LL--ashamed of the patch on your hand--why are we ashamed? I spent the past 40 years being ashamed and embarrassed of my psoriasis! I wouldn't tell anybody outside the immediate family I had it, and wore long pants all year 'round even when it was 100 degrees F. For many years I'd use tanning beds and sun bathing along with my cortisone creams to clear up and/or conceal it enough so I could feel less embarrassed when we were going on vacation and planning to swim in pools, etc. But the last few years nothing could clear it up--especially my legs. Interesting about the itch and no psoriasis. My skin would usually itch a lot before psoriasis broke out, and the psoriasis itched even more. My theory is that psoriasis/PsA are one in the same--the psoriasis can be under the top layer of skin so that you may not even see it--but you felt it in the form of an awful itch. I did see a dermatologist when mine broke out in my early 20s because it covered about 50% of my body at first.
Now that everybody's talking about having these little patches that aren't dx'd as psoriasis at first, I'm worried about our 2 oldest kids. Our son has had patches that come and go on his face the Dr has told him are seborreic (sp) dermatitis. Our daughter lately has had a patch on her cheek by her ear. I give them my betamethasone to use and it clears up for awhile. Our 3-yr old granddaughter has "eczema"--hmmmm--on her chest, arms, legs and butt. Omg I feel so bad to think they may end up with bad psoriasis and PsA someday!
What is it with all these autoimmune diseases? Do you guys think they're more common now, or is it just that there's more knowledge about them? It seems like every family has a person or several people who have some sort of autoimmune disease! My dad had celiac and looking back, I think the toenail "fungus" that plagued him all his adult life was probably psoriasis. We never could cure it. My one sister had juvenile diabetes--I'm not sure if that's autoimmune. I found out a couple cousins have RA--is that autoimmune? I have quite a huge relation-at least 70 first cousins. So, really, there isn't a large percentage of family with autoimmune disease.
It's just disappointing when one knows that they are passing the genes on and nothing can stop it. It's funny, I was so close to my dad. His toenails were horrible, the--ahem-fungus was so thick. I would work on them for hours about once a month. He'd always tell me not to worry how much I took off--it didn't hurt. He'd give me a dollar for doing it. None of my bros and sisters cared about him as much as I did. Funny how I was the only child who inherited his "psoriasis"! I'm glad I was so close to him and it's not his fault I got an autoimmune disease. But, I somehow feel that I am indirectly responsible for passing the bad gene on to our kids. Actually, they're getting it from both sides because my husband's dad and a couple brothers had psoriasis! :-(
Grandma J, I sometimes worry that I wouldn’t be able to love them enough (as you mentioned) and sometimes I worry that I would love them too much and in both of these situations give them mommy issues
Anyway, thank you very much guys for taking interest in my issues (both physical and psychological as it turns out and thank you for a lovely conversation!
My son and his wife are expecting their first child. He asks me so many questions, it's really sweet how concerned he is and how he likes my advice. I tell him I know I wasn't the perfect parent--nobody is....there is no reference book to go to for all the perfect answers. Raising my kids was so much different from how I was raised--times keep changing--I was shocked by how open our kids were to me compared to how I was with my mom. I wanted to say, we all try our best to be good parents, but we do make mistakes. My kids know one important thing though: that I love them unconditionally. This was a lovely conversation, LL, and you are an interesting person! Take care, and I hope you're feeling better soon!
I enjoyed following this conversation and have nothing to add except if you are serious about your PhD Lady Lazarus unless its reeeeeeally touchy feel stuff. This whole pessimist/optimist conundrum really doesn't exist. The glass is neither half full OR half empty. it is twice as big as it needs to be - WHY???????
Your approach to PsA if along the same lines is much easier and predictable..... You deal strictly with the problem at hand nothing more an nothing too distant.
Sorry for the late reply guys. Well, tntlamb, if the glass is twice is big as it needs to be and the amount of water is the same, doesn't that mean that the glass is 1/8 full? :D Haha, sorry, I really wondered the answer to that question though, why?
And about the PhD, I'm really serious about PhD and PhD is even more serious than me! I actually believe PhD gave me the PsA (apart from the genetics etc). The first red dot, which would later on turn into "the infamous great patch of the right hand" appeared when I was really, really stressed out about an exam and was really working hard (for months I mean, months!). And of course, I was very agitated, so one day I was having a fight with someone I care about very much and the red dots just appeared on my hands. From one second to the next! :D
And my first BİG flare which was in May happened when I was really having trouble with my thesis advisor. My first advisor had left the university, without even saying a word to me, and I had a really hard time with the new advisor who was kind of a thickhead and a jerk! When I was in the MRI, I was in tears promising myself that I would quit PhD and never look back. And over the summer I was really determined to do that. But come September, I was back in school, with a new (third) advisor whom I really, really love now! :) I am making up for the year I lost.
So as you said earlier Sybil, stress definitely triggers something you are prone to, and for me that was PsA. But that doesn't make it any less real.
So whats your field? An interesting factoid is that PsA patients are very frequently high achieving and above average intelligence. Stressors are known aggravators but not necessarily causes.
Haha, I am definitely high achieving and look what I get for it, I achieved being a proud PsA patient!!! :P LOL I'm joking of course.
tntlab my field is cinema :) You know what they say, those who cannot do teach :P though I'm glad I didn't choose to make cinema I really can't imagine myself on set right now :) reading endlessly is good!
Nope I'm not. AIMS 1 and AIMS 2 tests point that way. originally it was thought couch potatoes don't have as many problems until the overwhelming data related to obesity.
The other one they are trying to sort out is why the most severley impacted (and least likley to respond to treatment) in terms of reported pain also have a very low Emotional Intelligence Score. There is a growing understanding of the relationship between IL18, psychometrics, and CRP scores. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3258774/
Patient responses to Stelera a partial IL18 inhibitor have been generally very favorable and some of the newer pure IL18 inhibitor drugs have been nothing short of amazing. BUT there are some bizarre reactions as well. There are a number of studies relating to therapeutic response and improved EIS (Emotional Intelligence Score) Psychotropic drugs can effect that score dramatically as can some therapy.
Pretty exciting stuff when we start to think many "mental illnesses" are in fact autoimmune disease. Its one thing for a doc to say its anxiety, stress etc etc. He not incorrect, but he becomes a quack when he he doesn't offer treatment or treatment resources. I'm not referring to "therapy" but a whole family of medications that can help PsA (the percentage of those receiving relief is in parentheses:
Paxil (34.88%)
Omeprazole (34.88%)
Mirtazapine (20.93%)
Prednisolone 20.93%)
Risperdal (20.93%)
Paxil cr (18.60%)
Abilify (18.60%)
Lipitor (16.28%)
Wellbutrin (13.95%)
Ondansetron (13.95%)
It takes a skillful psychopharmacologist to apply these meds, bu they are out there. increasingly we are finding them in the better pain clinics. It seems that response to regular therapies increases significantly as well.
Wow, that's really interesting. I agree with janeatiu.
Also, I had never thought of mental illnesses as autoimmune diseases, that got me thinking. I guess it makes sense. Think about it, depression, for example, is essentially our own mind attacking our own mind. So with a systemic autoimmune disease, where our own defence system is attacking our own body, it is like our minds and bodies are behaving similarly.
Our exocrine system is what moves all those "chemicals" around our body to regulate various systems. The autoimmune system is what regulates the exocrine system. No question there is overlap of these problems. The question is whats cart whats horse and which do you treat? Psychiatry is so far removed from its roots, its almost unrecognizable. Its actually developing into a new specialty called Psychopharmacology.
and thank you for a lovely conversation!