My Psoriasis Journey
Hi there, my name is Victoria and I suffer from Psoriasis. This blog post is to share my story and hopefully help someone out there who is struggling or feeling helpless like I have. Finding information about treating psoriasis can be difficult and overwhelming, so I hope that this blog post helps you in some way.
Because itโs a long post, Iโm sharing an outline below, so you know where weโre going!
ย ย ย โข Defining Psoriasis – What is Psoriasis?
ย ย ย โข My Timeline & Diagnosis
ย ย ย โข Psoriasis Treatments Iโve Tried
ย ย ย โข Stress & Psoriasis Flare-Ups
ย ย ย โข Joining Medical Trials for Psoriasis in California
Section One:ย What IS Psoriasis? How is it treated?
If you donโt know what Psoriasis is, let me start by letting you know that it is a genetic chronic autoimmune disease that causes scales and itchy, dry patches on the skin. There is no cure and it affects everyone differently. A more specific diagnosis of what I have is plaque psoriasis (which refers to the โscalesโ that appear on the skin) and psoriatic arthritis (inflammation in the joints).
With Psoriasis, most people go through waves of โflare upsโ and there are times when it clears up as well. Not everyone who has Psoriasis will even get a flare up as this is often triggered by certain factors such as stress, cold/dry weather or even alcohol. Though if you ask a handful of dermatologists about what triggers a flare up they might say itโs really not very well understood. This has been my experience anyway. Lotโs of nonanswers and expensive medications that donโt work.
So letโs dive into my timeline:
Section Two:ย How I Was Diagnosed with Psoriasis
Letโs start at the beginning – in 2010 I was attending community college and working part time. My doctor suspected I might have insulin resistance (a more specific diagnosis of Polycystic Ovarian Syndrome) and concluded that, while my test results were still within the โnormalโ range, I did have insulin resistance. This meant that my body doesnโt use glucose from the food that I eat and in turn my pancreas makes more insulin. This also means that my food gets stored in my body as fat rather than used for energy. After this diagnosis my doctor put me on thyroid medication and metformin (treatment for insulin resistance). I was also seeing a dermatologist about my skin issues and joint pain, they concluded I had psoriasis as well as psoriatic arthritis.
Section Three: Finding Psoriasis Treatments That Work – And Using Them Sparingly
At this point my psoriasis was at its worst (or so I thought). It was coming down from my scalp onto my forehead and I also needed to get multiple steroid shots for intense joint pain. Every solution was temporary though. Fun fact – if you stick with a treatment too long your psoriasis will get used to it and come back. There were creams that I found helped clear my plaques but I could only use them sporadically so my skin wouldnโt become immune to the treatment.
Hereโs a list of psoriasis treatments that temporarily worked for me:
- Fluocinonide Topical Solution (for scalp)
- Fluocinonide Cream (for skin)
- Triamcinolone Acetonide
- Flurandrenolide Cream
Psoriasis on My Face
I still had very few answers medically but I was happy to be starting a new chapter in my life and my skin had cleared up quite decently. It wasnโt until the end of 2013 when it started to come back down onto my forehead again…ย
It was actually worse this time though. I had plaques all over my face, neck, elbow, breasts and back/butt. I continued to see dermatologist after dermatologist. Then, I tried pills, creams, injections – nothing worked. At least not for long.ย
Here is just some of what I tried that had no long-lasting effects:
- Steroid shots
- Ketoconazole shampoo
- Ketoconazole Gel
- Calcitriol Ointment
- Hydrocortisone valerate cream
- Derma-cleanse
- T/Gel Shampoo
- Salicylic acid scalp treatment
Reviewing my psoriasis timeline it is easy to understand what triggered my extreme flare ups though – STRESS!! My Psoriasis was at itโs absolute worst in 2014-2015 when I was with my ex John*. I wonโt go into too much detail about the relationship but letโs just say he was verbally abusive, and after being with him a year, I had enough.
Treatment for Psoriasis – California Dermatology and Clinical Research Institute
In the middle of our relationship I was fortunate enough to discover California Dermatology and Clinical Research Institute. Since almost all of the treatments I had tried didn’t work, I decided to join medical trials to test new and emerging treatments for psoriasis. Joining a medical trial does have some risks, and I did it because it could help keep the cost down for treatments and lessen my disappointment since at least I would be paid for my time. Itโs not a lot of $ but itโs a heck of a lot better than paying $50 for each injection under each individual plaque (yep I had this happen and the dermatologist felt so bad for me he only charged $50 total). FINALLY some relief! My face cleared up a bunch and even though I still had some plaques I was relieved to have my face clear up.
Joining Medical Trials for Psoriasis – New Treatments
Fast forward to 2020 and I have been in at least 3-4 different trials. Most of them did not clear up the plaques that were on my scalp, back and butt. Those that did help usually wore off their potency and my skin became immune to the medication. Between each trial I had to let my skin get worse again to be admitted into the next one – this was easy to achieve since by the end of each trial it was already coming back anyway.
Now as of November 2020 I have been in my current trial for over a year. It was the best one I have been in so far but unfortunately my plaques are getting worse again. I donโt have many pictures of my back/butt from before 2020 because I did not record my skin progress for that part of my body but in these two photos you can see the difference from March 2020 to November 2020.
Now In 2020 – Still Looking for Psoriasis Treatments & Solutions
Unfortunately thereโs no happy ending. No real answers and no promising progress to be made. I live with constant pain. Pain from my joints, pain from my cramps and pain from skin.
If youโre going through something similar I hear you. I feel your pain and I am here to support you.
This isnโt easy – thereโs no quick fix and honestly thereโs no difficult fix either.
Keep persevering. Thereโs more to life than pain and we are made more beautiful by the struggles we overcome. Iโll continue sharing updates on my psoriasis treatments to the blog, and you can also join me on Facebook and Instagram for updates and pictures of how my skin responds to treatments.
XO Victoria
