My Psoriases Story/Experiences and potential PsA so far
Posted Fri 29 Mar 2019 02.55 by TroyD
I have plaque psoriases and recently, guttate psoriases on probably 20 to 25% of my body. Just one year ago I barely had a small amount of plaque psoriases on my legs. I've heard of flare ups, but mine seems to have lasted for one constant year, I don't understand it.
In any case, I also developed joint pain in my fingers, knees, ankles, toes, feet and miscellaneous muscular pain in different parts of my leg, like under the right butt and thigh above the knee.
My dermatologist today gave me a bunch of creams to use and phototherapy for three months, so I'm hoping this will take care of the lesions. It has moved onto my back, arms, legs, feet under the bottom of my fingernails, no pitting or splits yet, but the edges of my fingers around the bails are peeling skin and painful if I rub up against something. I don't know the right terminology to use for it.
It's a very consuming disease, it consumes much of my thoughts, activities and day. The pain and emotional aspect of it caused me to miss over a month of work recently. Then, doing research about my disease and learning I may have PsA is quite scary. My Dermatologist believes it's what I have based on the symptoms, my age (41) and my psoriases on my body. She tried to make me feel better by saying my case was considering, "mild to moderate", but looking at myself in a mirror without clothes, even I have to laugh at that.
I do sit down and work for a living, work in customer service, so in my case, it actually has been beneficial, as the type of arthritic pain I've been in is lessened when I sit.
However, I am overweight, have been most of my life, I did a 360 degree change on my diet 30+ days ago and have lost 30 pounts. I'd say I'm at around 300 to 320 pounts, so I'm a teddy bear. I smoked cigarettes for 24 years, I quit back in November of 2017, I no longer eat most junk foods, no more breads or pastas, I've mostly been on a light seafood, lots of greens, veggies, fruits, admittingly, something I almost never did for most of my life.
I ate a lot of processed food (Frozen chicken patties as an example), would eat a lot of pizza from Dominos or drink lots of Diet Pop and chips and other garbage. Looking back at how I lived, I can't believe the slob I was and maybe still am to an extent.
I really DO believe that maybe some of what I'm going through is my own fault. Do you believe lifestyle choices can cause the severity of our disease? Is it my fault I am dealing with this or is that just self pity?
The psoriases isn't new to me. I've had it approximately 5 years. But then, it was a light amount on the left side of my belly, then started getting, "dry skin" around my ears, scalp about a year later, figured it was just not using good soap or shampoo. EVentually that turned into full fledged scalp psoriases, have it above my ears, eyebrows, most of my arms, most of mid-to lower back region, elbows, forearms, not as much on my upper arms or shoulder area. I've been spared mainly on my upper chest, neck and most of my face region. But now, even those areas are becoming slowly affected by psoriases.
I recently had what I believe is a strep infection recently. I saw two doctors that said what rash that was on my right arm was nothing but contact dermatitis (first one said), then second one said it was strep infection ON my arm.
My dermatologist today confirmed it was Guttate. It covers about my mid-forearm up to my wrist on my right arm. Was mad itchy and inflamed the first 2-3 days. I used anti-bacterial presciption cream and it's kept the itch at bay completely.
One thing I've learned is if you have issues on your skin, SEE a dermatologist, our conditions can mimic so many other skin conditions that most doctors will brush it off as something else.
I know this all over the map, I'm just scared, hopeful, not hopeful, positive, yet negative. I'm a roller coaster of emotions.
I see my Rhumetologist for the first time in a month. Until then, it's things like Betaderm, other creams.
Dovobet was a godsend about a year ago. It cleared up ALL of my leg psoriases and most every where else. Then it came back with a vengeance and of course, Dovobet lost its effectiveness and no longer does anything for me.
I've opted to steer clear of Metho and the other medicines for now. I want to talk to the Rhumetologist first, get a clinical diagnosis, see how my other therapies are going.
I'll find what works for me. But, I remain positive on some fronts because I've made sweeping life style changes, so in some cases, I feel good, mainly my digestive system is happy with me, just my skin and joints are angry with me.
I wish every one pain free and psoriases free. We can experience brief or long remissions, may all of us experience as many as we can.
Thanks for listening to my rambling story.
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If anyone wants to share their story, experiences with me, I'll more than be happy to read any and all responses. Know that you are not alone in this disease and diseases in some cases.
Any tips on triggers, things to try, admittingly I let the psoriases get too far out of hand before I requested to see a Dermatologist. When they were just mainly on my legs and didn't itch, burn, crack or hurt much and didn't have joint pain, I ignored it. A mistake I regret, but this disease isn't easy to understand until you do research, educate yourself.
I'm getting help for my symptoms, I've changed my diet dramatically, I've altered things in my life, I'm still working, I can still walk (with pain), so this is just the beginning of a long road, but the emotional/mental aspect of my disease... it's very overwhelming. I was married for 11 years and now I live alone. I don't drink, I don't smoke ciggs anymore, so my, "going out" social circle is much smaller than it once was.
I find talking to people that don't know what my (our) disease is, it's hard for them to relate to what I'm saying, so it's probably best I find a forum to let out my words, my thoughts, my progression.
I know this isn't necessarily a support group, but if I can reach out to anyone and make them smile, I'm all for it.
A statistic I didn't know was that around 25-30% of individuals who have psoriases will eventually develop psoriatic arthritis. I didn't realize the scope and size of these numbers. It's wild.
Anyway,
Thanks for listening.
Troy (41 years old, 5 years Psoriases, suspected Psoriatic Arthritis)
Hi Troy
What can I say to you. Must admit you sound positive at any rate. I am hoping after all the dramatic changes you have made will in long run help you diet ECT.
I am sure one of the readers will come back to you with comforting actions that may help you, in the mean time as for any one I will say a prayer for you in my thoughts. Stress is my main factor and I can not help at moment being stressed with family affairs shall be glad when it's all over may be then I can relax in the mean time take care of yourself.
Victoria
I hope all the readers read this, my brother was prescribed Cetraben dermatologist last week. I have also tried the sample he was given now my GP has prescribed it for me. I have been putting on my scalp and it has calmed it down. Also I put a teaspoon in a half mug of boiling water handed calf water then put on head as a shampoo last night washed out then massaged scalp with the oitment it has to be oitment only over night and has calmed down applying it twice a day, also ran a bath with same again a mug of boiling water full to my running bath last night washed private areas with baby soap my skin was very soft after just patted dry not roughly thought I would share with you all it is good for eczema and psoriasis a good thing is it can be purchased over counter and has no chemicals agents in like preservatives give it a try guys
Victoria
Posted Fri 29 Mar 2019 23.43 by TroyD
That's very interesting, thanks for adding that post.
As much as it pains me to say this, my disease changed my life for the positive and the negative.
I've changed my diet tenfold for the first time in my 41 years and in that aspect, I've never felt better. I have GERD and for the last 35 to 40 days that I gave up ALL sweets, pops, breads, pastas and virtually every thing bad for you, my acid reflux has been extremely minimal,
The only thing I want to cut out is coffee. I have a small cup of black coffee in the morning and another during work without sugar or any creams or additive crap. I don't drink anything with any fake sugar either like Nutrasweet or Aspartame, no thanks.
I do squeeze a little bit of a lime into either some chilled water or warm water when I get home from work, drink it an hour or so before bed, just a small amount so I don't wake up needing to use the washroom in 30 minutes. Really does the trick after a long day. Many health benefits. I know it's not some big shock to many here, but I'm learning a lot when it comes to my health.
The negatives I spoke of is of course there's nothing GOOD about this disease. However, it did wake me up to make lifestyle changes that I should've been doing all along.
I quit smoking after 24 years back in November of 2017 because I knew it was a strong trigger for psoriasis. Also, it was hard to breathe when I woke up, coughing for 20 minutes wasn't fun. I never wake up coughing anymore.
So, there's always good and bad in every part and aspect of life, I'm just trying to focus on the GOOD parts of my life I have going. Being itchy, burning skin and being self concious about it isn't going to keep me isolated. It may have me covering up my arms with long sleeve shirts and wearing jeans instead of shorts, but I don't do it for me, I don't care what someone thinks of me. I do it so others don't have to look at my lesions. Many won't understand what it is and think I'm, "contageous".
In any case, I start my UVB phototherapy sessions soon, then I see my Rhumatologist in a month. So, working on the skin, then that specialist can help me cope with the arthritis part of my disease.
Is Psoriatic Arthritis considered a separate disease, or is it just an extension of Psoriasis, I mean, technically? Either way, I will take it one day at a time.
Thanks for listening as I continue to add to my ongoing story and battles.
Posted Sat 30 Mar 2019 23.25 by Shazz
Hi. I have Psoriasis for many years. My mum has had it since she was 13. So I always knew a bit about it. Seen how it affected my mum.
My first experience was with my partner years ago . Went to shower, noticed on my baby toe, skin was red, thick. Got into bed with him , he was what the hell!!. So left him.
My nail psoriasis started after that. The pain. Ugly. Could not wear shoes. On sick for weeks.
Now on most of my body. Dovobet never really worked for me .
Attended dermatology end of January. Prescribed lots. And an appointment for light therapy.
Creams and lotions helped. But you can only use for short time.
I have noticed since, skin is going back again.
Posted Sun 31 Mar 2019 05.21 by TroyD
I'm not overly impressed with the dermatologist I saw, just tossed me a bunch of creams with repeats for 5 to 10 times each, but I am looking forward to the light therapy.
Sorry you have to battle through all of that.
It's an ongoing battle for us all, but we shall find a cure one day. More and more medicines are coming out all the time.
Keep at it. Don't let stress overwhelm you, this disease loves to feed on our stress, lets not give into it! Hard not to, I know, I struggle with that every single day!
All the best and thank you for sharing your story with me.
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