Part 3 - Frequently Asked Questions.
Hello! Welcome/ back!
I've put together this little informational post to allow you guys to share with folks who may have questions. Hell, I've had this bloody condition for 26 years and even I learned some shit! :p
So! Lets get started!
What Is Psoriasis?
Psoriasis is a long term skin condition typically described as patches of skin that are red, itchy, painful, scaly or flaky. Plaque Psoriasis is the most common type making up around 90% of total sufferers. Psoriasis is considered an Auto-Immune Disease. This is when the body can't properly decipher the good from the bad. In our case, our body attacks itself particularly related to our skin. In an attempt to push the "bad" skin out it rapidly produces new layers of skin, and pushes them through in a high volume, which our body cannot naturally er, exfoliate? So it builds up and forms plaques. The silvery appearance is caused by the fact that as it is pushed out, it loses its connection with the blood supply, drying out. As it dries, it becomes looser as air can sit between the layers, and ultimately flakes off. A cut on psoriasis can be completely healed and the evidence flaked off, in about 24 hours.
There are 5 main types of Psoriasis:
I've put together this little informational post to allow you guys to share with folks who may have questions. Hell, I've had this bloody condition for 26 years and even I learned some shit! :p
So! Lets get started!
What Is Psoriasis?
Psoriasis is a long term skin condition typically described as patches of skin that are red, itchy, painful, scaly or flaky. Plaque Psoriasis is the most common type making up around 90% of total sufferers. Psoriasis is considered an Auto-Immune Disease. This is when the body can't properly decipher the good from the bad. In our case, our body attacks itself particularly related to our skin. In an attempt to push the "bad" skin out it rapidly produces new layers of skin, and pushes them through in a high volume, which our body cannot naturally er, exfoliate? So it builds up and forms plaques. The silvery appearance is caused by the fact that as it is pushed out, it loses its connection with the blood supply, drying out. As it dries, it becomes looser as air can sit between the layers, and ultimately flakes off. A cut on psoriasis can be completely healed and the evidence flaked off, in about 24 hours.There are 5 main types of Psoriasis:
- Plaque - As described above
- Guttate - Small spots in large quantity, that can occur all over the body, but typically in larger areas like the back, stomach and thighs.
- Inverse - Affects the folds in the skin, for example, the ears, genitals, armpits, inner elbows etc.
- Pustular - Blisters on the surface of the skin. This variety is more uncommon.
- Erythrodermic - This basically means all of the above (aside from pustular).
My skin has at one time or another affected most of my body. The only places I'm yet to have affected are my mouth and my palms.
What Causes Psoriasis?
What Causes Psoriasis?
No one really knows for sure what the exact cause of Psoriasis is, which I guess is why there is no "cure". It is generally thought to be a genetic thing, however, those who carry the gene don't necessarily present with the condition. For instance, my Grandmother on my mum's side suffered with severe Pso alot of her life. She had 8 children, and only one uncle (to my knowledge) has it, none of his kids do. My mum never had it, neither did my dad or any of his lineage, my siblings don't have it, (Although they have a different dad, and one sister has pretty nasty Exzema. ) Just little old me got Psoriasis. The thing with Psoriasis is it can be triggered by something as simple as a scratch. Cuts, burns or otherwise damaging the skin like say tattooing it or piercing it (whoops) can trigger an outbreak. If it does, the spot will usually emerge from the damaged area. If you're lucky, the cut will heal, and you can treat it topically. Psoriasis can also be brought on by perfumes, washing detergents and softeners, chemicals etc. These can cause flare-ups for those already suffering too. Even jewellery can do it! Another very common trigger for people is stress. If you think this is your cause, my advice would be to see a doctor immediately, and perhaps try an anti anxiety medication, seek counselling, take up yoga, or meditation, or even colouring in. Whatever you do when you need to relax. Stress can cause it, and stressing about it just makes it worse.
Is it contageous?
No.
Who can get Psoriasis?
Unfortunately, Anyone! It does not discriminate, Affecting all ethnicities, skin types and skin colours. Poor people like me to the mega rich, the likes of Kim Kardashian (yes, she has it too!) It is estimated to affect up to 4% of the world's population. That's about 300 million people world wide! 200,000 Just in my state of Tasmania. 300 people just in my Suburb!
It equates to about 1 in every 25 people. So chances are, if you aren't the affected one in your friend/ family group, someone you spend time with regularly is!
What are the treatments?
The treatments for Psoriasis vary greatly. They range from topical creams to immune suppressing chemo drugs. The treatment you receive is kind of like playing snakes and ladders - Once the items on the first steps stop working, you roll the dice, climb up a ladder and start there. Every so often you'll get something that causes a bad reaction/ flares you up and that's your snake and you take a step back.
Step 1 is usually lower dose steroid creams, thick pharmaceutical grade moisturisers and stronger steroid ointments.
These are a bit uncomfortable, and can thin the skin, but are relatively side effect free. Long term use can stop these creams from working, and can also cause long term issues like reliance. Withdrawal from Steroid reliant skin can be horrific.
Step 2 are dietary changes and UV-B light therapy.
In a lot of cases, doctors will recommend trying an elimination diet. This is where you start a highly restrictive diet of basic healthy foods - these vary person to person, and then slowly re introduce one food item at a time to see if it causes flares or reactions. If it does, you remove that food item and move to the next. If you react to two different foods with shared ingredients or proteins etc, say for instance - gluten, then you remove gluten. if you improve then you remove it, if you flare when trying to re-introduce it, you try and remove it permanently. This is a difficult option, as some people may find there is not a lot to be left with at the end. For me, this didn't help me much at all in regards to my skin. I also wouldn't recommend it for young kids, But I will go into that more in a future treatment review post.
UV-B Light therapy is a treatment based on the fact that sunlight often eases the physical symptoms of Psoriasis. While extensive time in the sun puts you at risk of skin cancers, melanoma's etc, UV-B therapy is a filtered UV treatment that specifically targets our skin, while not using the harmful range of UV-A light. This actually worked really well for me until the fact that I'm the definition of pasty white girl reminded me that 3:30 was too much and I got sunburnt. I would, however, recommend trying it as in the time working up to 3:30, I had large areas clearing up really well!
Step 3 is Systemic treatments.
You start out on Non-Biologic medications. These are the most commonly used and can be used in conjunction with Biologics. Methotrexate and Cyclosporin are examples of these. These work by targeting your immune system and suppressing its reaction. They broadly suppress your bodies ability to fight itself, but in doing this, they also drastically lower its abilities to fight off the actual threats like the flu, a chest infection can quickly become pneumonia, cuts and grazes can become infected etc. These, in particular, are drugs that definitely require thorough research before beginning. For me, they were the most problematic, with the most side effects. For many people, they do help, but I always recommend making a well-informed decision, especially in regards to MTX.
Biologic treatments are drugs like Humira, Taltz and Stelara.. These are similar in the way they work, but much more specific in their target. They work by blocking specific proteins, groups of proteins or inflamation receptors to stop the body sending and receiving inflammatory markers. If one end sends the message, the other end cant receive it, meaning the body won't go into overdrive trying to repair something that aint' broke.
Is Psoriasis just a rash?
Yes and no.
If you look at it, you see the physical symptoms of Psoriasis - which is our skin. While that is the most obvious part of it, it comes with a lot of internal issues. We are always immuno-compromised. Because our body is always busy fighting itself, Alot of infections get through undetected. Add to that, we are always fatigued because when it comes to our body, production never stops. That makes any infections we do pick up harder to shake off. And that's before treatment side effects. When the coverage is wide spread, it is painful, itchy and so so tight. I've torn my skin from crouching and sitting down, where it was so tight that the additional pressure of the bend was too much and my skin has literally ripped apart. I've had it on the heels of my feet where it splits so deep that you cant walk on it without it bleeding and bringing tears to your eyes.
Fatigue is very common for us. If I had a dollar for every time I've been told how lazy I am because of how much I can sleep I'd be a very rich girl. I can get 12 hours a night, take a nap in the afternoon, and still feel tired. No amount of sleep feels like enough for me. Then, our treatments often give us side effects - fatigue and immune issues (on top of what we already have) nausea, headaches, body aches, and lots more.
There is also a major mental and emotional toll. More than 50% of us suffer from depression, many of us to the point of suicidal thoughts and attempts to take our lives. We suffer shame, embarrassment, ridicule, bullying and so, we are often uncomfortable, reclusive and quiet. We often back out of social events last minute, due to flares, or just not feeling up to the stares of the people we've never met. All of this goes on to take its toll on our families and loved ones. It also affects our ability to work, costs us a fortune in specialist visits and medications, limits our wardrobes, makes shopping for new clothes a mortifying experience at times, limits the food we eat, what we drink, hell, even our ability to enjoy a long hot shower! There is a lot more to it than meets the eye.
Then, there are the secondary conditions. Psoriatic Arthritis is by far the most common, and sadly you don't even have to have Psoriasis to get PsA, you might just be unlucky enough to carry the Genes. This can affect any joint and be incredibly painful and debilitating. For me, this is my biggest issue.
We are also at a much greater risk of:
I think that's enough for now, but I hope this is informative for both sufferers and those who want to learn more, about what their loved ones may be dealing with. It's not easy and it's not pretty, but those of us who suffer with it will appreciate to no end the effort you put in to learn more about us. Some of the pictures used, are of me, others have been sourced online, and only used to be an example. All rights remain theirs.
Thank you so much for reading!
I hope to see you back for the next one.
Millz
xx
Is it contageous?
No.
Who can get Psoriasis?
Unfortunately, Anyone! It does not discriminate, Affecting all ethnicities, skin types and skin colours. Poor people like me to the mega rich, the likes of Kim Kardashian (yes, she has it too!) It is estimated to affect up to 4% of the world's population. That's about 300 million people world wide! 200,000 Just in my state of Tasmania. 300 people just in my Suburb!
It equates to about 1 in every 25 people. So chances are, if you aren't the affected one in your friend/ family group, someone you spend time with regularly is!
What are the treatments?
The treatments for Psoriasis vary greatly. They range from topical creams to immune suppressing chemo drugs. The treatment you receive is kind of like playing snakes and ladders - Once the items on the first steps stop working, you roll the dice, climb up a ladder and start there. Every so often you'll get something that causes a bad reaction/ flares you up and that's your snake and you take a step back.
Step 1 is usually lower dose steroid creams, thick pharmaceutical grade moisturisers and stronger steroid ointments.
These are a bit uncomfortable, and can thin the skin, but are relatively side effect free. Long term use can stop these creams from working, and can also cause long term issues like reliance. Withdrawal from Steroid reliant skin can be horrific.
Step 2 are dietary changes and UV-B light therapy.
In a lot of cases, doctors will recommend trying an elimination diet. This is where you start a highly restrictive diet of basic healthy foods - these vary person to person, and then slowly re introduce one food item at a time to see if it causes flares or reactions. If it does, you remove that food item and move to the next. If you react to two different foods with shared ingredients or proteins etc, say for instance - gluten, then you remove gluten. if you improve then you remove it, if you flare when trying to re-introduce it, you try and remove it permanently. This is a difficult option, as some people may find there is not a lot to be left with at the end. For me, this didn't help me much at all in regards to my skin. I also wouldn't recommend it for young kids, But I will go into that more in a future treatment review post.
UV-B Light therapy is a treatment based on the fact that sunlight often eases the physical symptoms of Psoriasis. While extensive time in the sun puts you at risk of skin cancers, melanoma's etc, UV-B therapy is a filtered UV treatment that specifically targets our skin, while not using the harmful range of UV-A light. This actually worked really well for me until the fact that I'm the definition of pasty white girl reminded me that 3:30 was too much and I got sunburnt. I would, however, recommend trying it as in the time working up to 3:30, I had large areas clearing up really well!
Step 3 is Systemic treatments.
You start out on Non-Biologic medications. These are the most commonly used and can be used in conjunction with Biologics. Methotrexate and Cyclosporin are examples of these. These work by targeting your immune system and suppressing its reaction. They broadly suppress your bodies ability to fight itself, but in doing this, they also drastically lower its abilities to fight off the actual threats like the flu, a chest infection can quickly become pneumonia, cuts and grazes can become infected etc. These, in particular, are drugs that definitely require thorough research before beginning. For me, they were the most problematic, with the most side effects. For many people, they do help, but I always recommend making a well-informed decision, especially in regards to MTX.
Is Psoriasis just a rash?
Yes and no.
If you look at it, you see the physical symptoms of Psoriasis - which is our skin. While that is the most obvious part of it, it comes with a lot of internal issues. We are always immuno-compromised. Because our body is always busy fighting itself, Alot of infections get through undetected. Add to that, we are always fatigued because when it comes to our body, production never stops. That makes any infections we do pick up harder to shake off. And that's before treatment side effects. When the coverage is wide spread, it is painful, itchy and so so tight. I've torn my skin from crouching and sitting down, where it was so tight that the additional pressure of the bend was too much and my skin has literally ripped apart. I've had it on the heels of my feet where it splits so deep that you cant walk on it without it bleeding and bringing tears to your eyes.
Fatigue is very common for us. If I had a dollar for every time I've been told how lazy I am because of how much I can sleep I'd be a very rich girl. I can get 12 hours a night, take a nap in the afternoon, and still feel tired. No amount of sleep feels like enough for me. Then, our treatments often give us side effects - fatigue and immune issues (on top of what we already have) nausea, headaches, body aches, and lots more.
There is also a major mental and emotional toll. More than 50% of us suffer from depression, many of us to the point of suicidal thoughts and attempts to take our lives. We suffer shame, embarrassment, ridicule, bullying and so, we are often uncomfortable, reclusive and quiet. We often back out of social events last minute, due to flares, or just not feeling up to the stares of the people we've never met. All of this goes on to take its toll on our families and loved ones. It also affects our ability to work, costs us a fortune in specialist visits and medications, limits our wardrobes, makes shopping for new clothes a mortifying experience at times, limits the food we eat, what we drink, hell, even our ability to enjoy a long hot shower! There is a lot more to it than meets the eye.
Then, there are the secondary conditions. Psoriatic Arthritis is by far the most common, and sadly you don't even have to have Psoriasis to get PsA, you might just be unlucky enough to carry the Genes. This can affect any joint and be incredibly painful and debilitating. For me, this is my biggest issue.
 |
| This image shows the inflammation levels in a Psoriasis sufferer and a healthy person. |
- Cardiovascular Disease
- Diabetes
- Crohns Disease
- Heart Attacks
- Hypertension
- Strokes
- Ulcerative Colitis
- Celiacs Disease
- +52% Higher Risk of Lung and Bronchus cancer
- +205% Higher Risk of Stomach and upper intestinal tract cancer
- +31% Higher Risk of Urinary Tract cancer
- +90% Higher Risk of Liver Cancer
- +46% Higher Risk of Pancreatic Cancer
- +431% Higher Risk of Epidermal Carcinoma
- +100% Higher Risk of Basal Cell Carcinoma
But our chances of developing melanomas are about the same as everyone else... So.. Whew!
Is it painful?
Yes. While we can have good days, our good days are just less painful. I actually had no idea how much pain I was actually in all the time until after Humira, because I'd had it my whole life, I didn't know any different! When my skin started to come back, and only a very small patch, I realised how sore and achey it was, and remember crying to Jason, that I didn't know how I'd done it all that time! I had built up such a high tolerance to pain, that things that should have bothered me pretty badly went un-noticed. Pain relief doesn't really help a whole lot either. Because our Psoriasis covers large percentages of our body, pain relief can't really "target" any one area. Anti-inflammatories can help a little, but pain relief actually caused me flare ups, especially if I had to take stronger pills for joint issues for multiple days, my skin would wind up much worse, which isn't much of a win when you're looking for relief.I think that's enough for now, but I hope this is informative for both sufferers and those who want to learn more, about what their loved ones may be dealing with. It's not easy and it's not pretty, but those of us who suffer with it will appreciate to no end the effort you put in to learn more about us. Some of the pictures used, are of me, others have been sourced online, and only used to be an example. All rights remain theirs.
Thank you so much for reading!
I hope to see you back for the next one.
Millz
xx
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