Life – Terror. Ecstasy. Fight. Denial. Flight. Failure. PAIN. Forgiveness. Reconciliation. Hope. Love. Peace – Death
The most underestimated disease?
Lets face it nobody is going to die from an itchy body? Well actually…….
The name of the disease (psoriasis) comes from the Greek word for itch, “psora,” excessive scratching can cause bleeding, making the problem worse, leading to potential infection, even sepsis if not caught early. Psoriasis sufferers are plagued by embarrassment that can lead to employment problems (reduced income), social discrimination and undoubtable, diminished quality of life.
Why is it called the heartbreak of psoriasis?
“If you have a disease that creates enough inflammation that it’s affecting your heart, it’s also very hard for your brain to function well,” says Dr. Olbricht. The depression that people with psoriasis often experience is not just a consequence of disliking how they look, she believes, it is a physical, physiological response.
My older sister, Carol also suffers with Psoriasis, she has done since her early teens. Carol contracted breast cancer in her early thirties, an early age. She is 30+ years in remission but her psoriasis still (regularly) affects her quality of life, significantly so during a severe psoriasis ‘flare-up‘. Carol once admitted to me, ‘I would rather have my breast cancer back than another [serious] flare-up of psoriasis’!
The itch and appearance of psoriasis unavoidably will get in the way of your life, whether you’re at work or school, pregnant, or in a romantic relationship, it is impossible to explain to a none sufferer how much it can effect the your quality of your life, on a daily basis. Mortality rates may be affected in severe cases of psoriasis.
A dodgy immune system
Advanced metastatic prostate cancer and breast cancer share common Geno characteristics, closely linked to the Brac-1 & Brac-2 genes (please see my previous blogs for more information). It makes sense that Carol and myself both have similar immune system problems – psoriasis, breast cancer, prostate cancer – as we share much of the the same gene pool (DNA).
The majority of ‘go to‘ psoriasis treatments (baring most creams & ointments) are immune suppressants, (Methotrexate, Deucravacitinib). Psoriasis is complex, so complex, so far we haven’t been able to figure it out, however, essentially it is our immune system gone rouge, AWOL. Clearly, treating a cancer patient with an immune system suppressant is likely to accelerate cancer advancement.
Psoriasis itself doesn’t weaken the immune system, but it’s a sign that the immune system isn’t working the way it should. Anything that triggers the immune system can cause psoriasis to flare up. A weakened immune system cannot control cancer spread effectively (as good as a normal immune system)
Before you qualify for the ‘posh’ (expensive) psoriasis treatments e.g. Humira (adalimumab) an immunosuppressant medicine (injection), a patient has to have exhausted all other options. In 2015, after three weeks in hospital to treat a severe flare-up I had reached that point. I was due to start Humira injections, a potential game changer in terms of (my) quality of life. I was diagnosed with Prostate Cancer 23rd December ’15 (just a matter of weeks before commencement). All immunosuppressing psoriasis treatment was cancelled.
At that time, post diagnosis, surgery, the very beginning of my cancer treatment, the risks associated with messing with an already fucked-up immune system were clear and considered by my medics unacceptable – solve the psoriasis but fuel the cancer? I suppose I could have insisted? I doubt whether my oncologist (or my dermatology consultant) could have ethically sanctioned potentially life threatening medications.
Seven years on, ‘we’ are now facing the same quandary all over again.
My latest flare-up, by far the worse I have ever experienced, has put me in hospital. So far, standard clinical treatments, creams, ointments etc. (and some chemicals – steroids, antihistamines etc.) are not having any impact, despite very high dosages.
Outside of psoriasis world – I am nervously awaiting to commence a Prostate Cancer Clinical Trial, OVM-200. A potential life extending fix. I have posted about this several times. I have been chasing this trial for over four years and just very recently managed to get to the very front for acceptance, with The Royal London Hospitals Trust. The only, remaining barrier is the current severity of my psoriasis.
Two issues – Trial Sponsors will not accept me whilst I am being treated with any immunosuppressing drugs. They will also, not accept me whilst my skin condition is so severe. The only saving grace is the trail has been (temporarily) postponed, for 1, 2 or even several months.
Doctors, Step Change
My dermatology consultant recommends my having the psoriasis TNF injections as soon as. She has conferred with the cancer trial coordinator, who agrees. Both are of the opinion that in terms of the balance of risk v quality of life, this is their favoured (recommended) option. I am not sure yet (only found out today) but I am inclined to agree.
In Seven Years has ‘anything’ really changed?
Any immunosuppressing drugs will be harmful, may affect my immune system adversely, might accelerate my cancer metastases. The only difference between 7 years ago and now is; Advanced Metastatic Prostate Cancer (no cure), at 7 years, I am looking at 2-3 goodish years left. Precious years that should be, (might as well be), as psoriasis free as possible so that I can actually enjoy them.
Honestly? laying here on my hospital bed, ‘itchy as fuck’, oiled up, bandaged up, fully creamed up, wearing baby’s white mittens, to stop myself ripping the skin off my bones, pumped full of steroids & 3 times the ‘normal’ dose antihistamines, I am struggling to fully process what are two, less than ideal, options. Brain fog, another chronic psoriasis symptom.
Psoriasis affects your brain chemicals.
Psoriasis (mine is plaque psoriasis) make skin cells grow out of control and form scaly plaques. They also change levels of chemicals in your brain that affect your mood. A cytokine called TNF-alpha may affect brain chemicals like serotonin in a way that can lead to depression. It affects the way you feel about yourself, the clothes you choose to wear, the way you manage symptoms and the way you care for your overall health. I am not sure I am (currently) best placed to make important life affecting decisions?
Why is psoriasis uncurable?
One of the main reasons there’s no cure for psoriasis is that experts don’t know exactly what causes it. Psoriasis is a condition that requires individual treatment plans because its causes are unknown. Research suggests that this condition could be caused by: a shit immune system. Like many conditions (including cancer) it is also severely affected by increased stress.
What is clear is that many people who have psoriasis say they feel exhausted. Some people say the constant fatigue, which can interfere with everyday life, is one of the most troublesome symptoms of psoriasis. Advanced Cancer also brings with it fatigue, that increases as the cancer spreads.
I feel tired today, fatigued, foggy brained. Is that my Cancer fatigue or my Psoriasis fatigue….or both?
Psoriasis affects about two per cent of people in the UK but the severity varies significantly – for some people it is just a minor irritation, for others it has a major impact on their quality of life. It is a chronic condition that usually involves periods of few symptoms followed by periods of more severe symptoms.
It changes and can change dramatically in a very short period. I was absolutely fine just 8 weeks ago, now I am the worse I have been in over 20 years. The chronic condition leaves 40 per cent of sufferers embarrassed, 22 per cent depressed and seven per cent suicidal, a recent survey of 950 patients found.
Psoriasis is growing, becoming more and more prevalent, one of the most common skin conditions in the United States. Psoriasis has been linked to the depression and suicidal tendencies in the patients. The costs associated with decrements in quality of life, lost productivity, and work absenteeism are enormous, increasing overall costs associated with the disease management.
Studies that have probed the link between psoriasis and depression hint towards a reciprocal relation between them. Psoriasis patients were more likely to be depressed than the general population with patients’ age, education and disease severity being important predictors of psychological distress in the patient cohort [Gupta et al.] In their study of 127 psoriasis patients found that 9.7% of patients reported their wish to be dead, and 5.5% reported active suicidal ideation at the time of the study. These studies have highlighted the need for psychosocial strategies in treating patients with psoriasis and helping them to improve their overall QoL.
I am being offered Adalimumab injections. These are in a class of medications called tumour necrosis factor (TNF) inhibitors. They work by blocking the action of TNF, a substance in the body that causes inflammation. It can also help accelerate the spread of other underlying conditions such as cancer.
In the majority of patients, Adalimumab is safe to take for a long time and some people use it for many years. However, Humira (adalimumab) is an immunosuppressant medicine that can lower the ability of your immune system to fight infections or make an infection worse. It may increase your risk of bacterial, fungal, or viral infections that may spread throughout the body. Some infections have been deadly.
Sophie’s Choice?
Thanks for Reading
Peace
Dying to Live 