I’ve been through the wringer with my health this month so thought I’d post an update for those who might be experiencing the pain of Psoriatic Arthritis. I have experienced hair loss as a result of the medication I’ve had to take this past year.
Hormone update 25/7/17: While my hormone levels might have been low at the time of testing, my body changed its mind and started producing hormones again.
I also decided to stop Arava, a psoriatic arthritis medication, as it was causing hair loss and thinning.
25/7/17: I am now embarking on treatment with Embrel, a self-injecting medication. I got the script from medicare last night so ordering it in and making an appointment with the nurse to show me how to use it. I am a bit scared.
16/05/2020: I went off Enbrel for a while because it suppressed my immune system too much and I kept getting colds. I recently went back on it, because the methotrexate wasn’t working to hold back the inflammation. During COVID19 it’s a genuine worry because I am so vulnerable to infection, but the aches and pains got too much.
I’ve also had spinal surgery for cervical stenosis as the nerve to my arm was being squashed. It’s mostly better, but sitting at a desk, using a mouse brings back the nerve pain.
Palmitoylethanolamide (PEA) For Inflammation
I’ve started taking a supplement called palmitoylethanolamide (PEA) which is known for its anti-inflammatory properties. I’ll keep you posted on this and if it helps.
Vitamin D and Fatigue
I recently got a test for Vitamin D and my score was under 10. Under 20 is a severe deficiency. People need to be at least 50 – 100 to be healthy.
One of vitamin D’s most important roles is keeping your immune system strong so you are able to fight off viruses and bacteria that cause illness. Excessive fatigue and tiredness may be a sign of vitamin D deficiency. Taking supplements may help improve energy levels.
I took a megadose of Vitamin D and I am slowly feeling less tired. I do lead a busy life, and push through despite fatigue, but this was sheer exhaustion. Even doing a load of washing wore me out. If you have fatigue, it’s good to rule out Vitamin D deficiency as this is something that can be remedied easily.
Health update 25/9/17: I’ve been on Embrel for 9 weeks now and I still wake up sore until my pain killers (which are supposed to be for my knee for osteo) kick in. I have good days and bad days, and am basically always sick. Often I have to work from bed as sitting at my desk causes hip pain. My hair is thickening up and growing again.
Hair Loss, Hormones, and Arava
At my most recent trip to the hairdresser, I discussed my hair loss. I love my hair in the day it gets done, as Ella adds curls and it feels healthy and bouncy. I don’t even need to tell her what I want. She “gets it”. I also discussed my recent hair loss issues with her. I explained to her that I was experiencing hormonal fluctuations and on medicine, that was causing hairloss. I could tell my hair was thinning as there was hair all over my car and carpet at work, as well as on my hair brush. And it just feels thinner. It seems to have stopped shedding since I went off the Arava, so that’s a blessing.
Hair Thinning and Hair Extensions
Anyway, Ella listened to me about my decline in self-confidence due to my thinner hair and suggested I could add 20 small bead hair extensions under my own hair while my hair regrows. I wouldn’t be getting extensions for length, just for volume. Ella said my hair wasn’t thick enough for invisible extensions to lengthen my hair, but that my hair could be thickened by about 20 small extensions, and would cost about $200 all up. I think that’s OK, to boost my self-esteem. I’ll probably do it for my 48th birthday, which is soon.
26/7/17 – I have decided not to use extensions, rather I am taking a hair, skin and nails vitamin, vitamin D, and not blow drying my hair if I don’t have to.
The Psoriatic Arthritis Pain Has Returned
Unfortunately, since stopping Arava, my arthritis is back with a vengeance, so I am in pain 24/7 despite pain medication. Some days after walking from the ferry, and I get into my car I just cry because it is so painful. It’s deep in my hips, in my knees, back, neck and fingers. The main pain area is deep in the hips. I am not trying to garner sympathy, but I want to be honest so other people in this situation know they aren’t alone.
The Next Stage for Psoriatic Arthritis Medication
Regarding the medication, I am meeting with my rheumatologist to hopefully move forward with a biologic treatment such as Humira, which is a once weekly injection. The problem with this is that it still suppresses my immune system and the cost is prohibitive to do as a private prescription (about $37K per year, which is why the government is so selective about who can get access to it). I’ll have to jump through a million hoops to get it through the PBS.
What is Psoriatic Arthritis
I have found that no one seems to know or have sympathy regarding this painful, degenerative condition. They think it is like osteoarthritis. It’s not. With osteoarthritis, it’s wear and tear and stopping certain activities can slow it down or stop the pain. Psoriatic arthritis is an auto-immune disease. In some people, like my mum, it is a skin condition which most people have heard of. Even Kim Kardashian has psoriasis.
“In about 30 percent of people with psoriasis also develop a form of inflammatory arthritis called psoriatic arthritis (PsA). Like psoriasis, PsA is an autoimmune disease, meaning it occurs when the body’s immune system mistakenly attacks healthy tissue, in this case the joints and skin. The faulty immune response causes inflammation that triggers joint pain, stiffness and swelling. The inflammation can affect the entire body and may lead to permanent joint and tissue damage if it is not treated early and aggressively.” – Arthritis Foundation
I don’t get psoriasis as such. In the past, I have had weird unexplained body rashes, and the what I now see as the beginning of psoriasis, but it really only happened in times of extreme stress. I also have pitted and weak nails. I now know that these are symptoms. I have both symmetric psoriatic arthritis (affects both sides of the body) and spondylitis (in the spine).
I’d love your comments, so please feel free to share your story below.