At the start of this journey I stated on the main page of the website that “no Dr had provided relief or quality advice on living with Psoriasis, and all they do is prescribe topical steroids that never work”
I decided to deal with both of these elements “Dr’s” and “steroids”… so at the beginning of this project I visited the Medical Centre and spoke with a new Dr.
I explained my position and she examined my extensive Psoriasis and asked that question I have heard before. “Have you tried steroids” to which I said yes, with little success. We discussed more treatments like Biologics and UV treatments and the toxicity of these treatments.
She advised that she would see if I could get an appointment (and that there are very few specialists in the field) hence the lack of information.
And so a new narrative started…
- The Dr asked about my level of discomfort, pain, irritation etc.
- The Dr said that my sleep must be badly affected as a result.
- And then questions were asked about my mental health.
- How long I had it and how I was coping with this level of disease.
- I was very honest, about the toll it was taking on me.
- And a 15 minute detailed discussion happened…
I realised that the issue I was frustrated with on the front page of this website was fundamental and needed to be stated:
Here is a doctor asking all the right questions………..therefore…
If your medical practitioner is not engaging with you on all these fundamentals, then you are not in the hands of the right doctor….I cannot state this more clearly. I have been frustrated for 20 years as my GP’s (General practitioner’s) did not meet the bar for care, either though lack of awareness, lack of experience, or general lack of knowledge….. and I as the patient did not seek to remedy this problem….
...therefore… make a change, expect more from your doctor and hold them accountable as the patient seeking help and ask about the fundamentals….
So what are these fundamentals:
- Your level of discomfort, pain, irritation, itch etc.
- The level of disease and plaque on your body.
- The position of the plaque on your body.
- Some people may have wide spread plaque on 10%, 15% and 20% or more of their skin causing widespread constant discomfort.
- Some people may have a few small patches on very sensitive skin, causing roaring pain and utter misery.
- How this is affecting your:
- Sleeping patterns – sleep disturbances due to itch/pain.
- Mental health – how the toll of the disease is troubling you.
- Self-consciousness – as a man, I’m probably less self-conscious, so that’s an important point to note, as this disease is present with men and women in equal levels. If you’re being Body Shamed, then it’s important to speak about that. I’ve just launched a new page about that “shame and covering up“, it might help.
- Levels of exhaustion. The disease does take a toll on your general exhaustion levels, after all if your skin is making 10 times more skin cells on 20% of your body, that’s zapping your energy levels.
- Your diet – as many people with Psoriasis are in that “deadly” triangle, of depression, low self-esteem and exhaustion, which can result in very poor eating habits. It’s widely reported in medical papers that a lot of Psoriasis patients are overweight, and it’s directly attributed to the effects of the disease resulting in poor dietary decisions, which only makes it worse.
- And let’s be real, diet is the real reason why we have Psoriasis. It’s a western disease and I have a lot of information to share about that coming soon.
- But I urge you to get a good dialogue going with a sympathic Dr, as you’re going to need their help to get on-top of this.
The Dr asked if I smoked and I shared that I had in the past but had become a non-smoker a few years before that. She advised that smoking is a well documented “trigger”, which can sustain flare-ups and heavy smoking can cause flare-ups. If you smoke, your chances of reducing your Psoriasis is much lower than non-smokers. So if you’re trying to battle Psoriasis and you smoke, you know where you need to start.
We discussed my diet and how I was making changes to try to promote gut health. That prompted the usual Dr tut-tut to alternative medicine, which I challenged immediately with a recent paper from the Mayo clinic, that spoke about the Gut Biome and auto-immune disease. The Dr stated that the Mayo clinic produces reputable science and I think we had an alignment. My informed position allowed me to ask for more focus than I had before. Seeing that this was to be my approach, the Dr said that trial and error was going to be a big thing, but let’s start with a general check up, to make sure everything is fine.
We agreed that I would get blood work and a follow up in 4 weeks, to see if any of my experiments with treatments and moisturisers worked… She asked that if I had some topical steroids left, to try them again on a small patch. So I could get a baseline and see if there was anything to learn. So in the name of a fair and unbiased test I agreed.
And HERE IS WHERE IT GETS INTERESTING…
I posted my first Blog post the weekend after that visit and I have been back (as 4 weeks has passed)………….the Dr welcomed me and asked me how I was doing…
There was instant reaction to how much better the patches on my legs were. I brought in the treatments that I was using and we discussed their pros and cons…..
I showed her the patch of Psoriasis (on my stomach) that I had treated with Steroids…….. there are NO Psoriasis plaques, just a faded patch… the Steroids worked………..
The steroids worked………
Yes I just said that….they worked…
So we had a more detailed discussion and I suggested “was it that the skin was softer, less thickened and less raised or was it that I was liberally using the steroid gel”. Yes was the answer to both points.
I stated that I had read another Mayo clinic discussion document that outlined that topical steroids should be used for at least 8 weeks……..
She stopped and grabbed a book (… as I said before my wife is a Dr and she told me that there is a prescribing guide… so ask your Dr to check it) and within a few minutes, she confirmed exactly that. Topical steroids should be used on body plaques for at least eight weeks…….. and there is way more……………
The same material states that a maximum of 30% of the body can be treated at the same time with a maximum of 15ml being applied to the body in one day…..
Another BOMBSHELL – So I asked, if that’s the case and I have already used over 600ml of alternative treatments in the last month, is it possible that I have never been prescribed enough of the treatment as it comes in 60ml and 120ml containers. Yes was the answer with a comment, that too little was being prescribed to deal with the extent of the Psoriasis that needed to be treated.
She said that the treatments (Dermalex, Grahams, Emuaid Max, Boots Psoriasis and the moisturisers) have all contributed to a general easing of the severe flare up on the body, and that this was a good thing as the steroids work well on softened skin, so would I be willing to try steroids again if the prescription was right….
I said what are we talking about……… the answer was 8 x 60ml bottles of Dovabet – one a week for 8 weeks and I am to continue with the other treatments as they are reducing the hardened skin, reducing redness, reducing pain.
There is a ‘caveat’ which is important to know; steroids can have “bounce-back” – after you stop using them the disease can come back…but here is the argument…. if you can understand the triggers (which is part of this journey) then you can avoid them.. if you have alternate treatments that can help ease flare-ups, then you have options.. however right now there is so much Psoriasis, that some wins are required, some relief is needed……
I agreed… that was one week ago… and I promised to share the results…..
You tell me…..
This particular patch is the best result so far (the light contrasts are not great), so if you look harder at the first image, you will see that there is still red inflamation, but nothing like 6 weeks ago. Hair growth has returned to normal levels, very few plaque production sites, zero irritation and my god it’s such a relief to see a real result.
I am not treating all my Psoriasis the same as there is too much of it.
- Scalp – is not being treated, except with Neutrogena T- Gel Shampoo.
- Arms – are treated with Grahams (to avoid treating too much skin at the same time)
- Feet – only treated with Dermalex.
- Underarms and other very sensitive areas – Emuaid Max.
- The right knee (pictured above):
- 3 weeks of intensive moisturising 3 times daily.
- 1 week of Dermalex.
- 1 week of Boots Dermacare – Psoriasis.
- 1 week of Dovabet – Topical steroids after a shower – and a treatment of Boots Psoriasis in the evening.
- Rest of legs, thighs, buttocks and back – similar to the above.
- Progress is not as pronounced yet but it is going in the right direction.
There is way more going on, with Diet… and I have learned a lot about flare-ups, which again I will share. But for now there is hope, there is method to what I am doing and I think I’m getting better at documenting it.
As things continue to progress, I will try to bring everything together. Right now I am in the middle of the battle and learning a lot.
If you can, share the site, share the blog, ask people to subscribe to the blog… better still if you know someone with Psoriasis, please share as I want to connect with other people with the disease and ask about their stories and add a page where they can share.
Til next week and I’m sleeping better….. Psoriasis Health Online 10th Oct 2021