one year mark

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With everything that’s been going on, I completely forgot to note that it’s been a year since I’ve been off topical steroids!

It was about this time last year that I found out I was pregnant and thus decided to give up topical steroids cold turkey. I had read that using them during a pregnancy could result in developmental delays of a fetus (if using too strong a dose for too long, or over too large of skin surface area), so instead I decided to completely cut it all out. Long story short, my eczema has been complicated by topical steroid withdrawal since that point, like I’m on some sort of a topsy-turvy roller coaster ride.

In fact, last night I had to have Jake cut my wedding band off my finger because my finger got so swollen and neither ice nor lubricants helped bring swelling down or get the ring off respectively.

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It was a sad and frustrating moment where I realized that despite all my perceived healing, I still cannot even wear any jewelry (minus my tragus piercing, which I think is only fine because it’s an area of the ear that has more cartilage than skin or nerve endings).

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Necklaces, earrings, bracelets, everything else tends to bother my skin (or be scary to wear like in the case with the ring yesterday).

I’ve also been struggling with bouts of intense nighttime itching, which has resulted in me scratching myself open more, (even when wearing gloves) as I have less mental fortitude to prevent myself from doing so late at night. The worst I’ve done so far was on my leg the other day, which definitely warranted some wound care attention.

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I remember as I scratched that I felt it start to weep but it was still so excruciatingly itchy, almost as bad as when I get hives, that I couldn’t stop.

So what’s a girl to do especially with the winter onset and the heater constantly running? Make a skin plan of course!

My current plan is as of now comprised of the following steps (in no particular order):

  • Get a new dermatologist (we’re moving soon) and make sure to request bloodwork and a skin prick test (the latter if my back can stay flare-free enough to do so)
  • Research about best emollients and supplements that include essential components for skin and skin healing (like ceramide and filaggrin) and confirm with new derm
  • Consult an herbalist to work in more herbs into my diet, bath, etc and to help address my sleep issues more naturally
  • Figure out more about the endocannabinoid system and what else helps it besides CBD oil since said oil is quite pricey
  • Take the dermatology technician certificate to get a better clinical understanding of dermatology and what doctors think (without having to go to med school and then through a dermatology residency)
  • Get myself moving more again. Brave the cold and go for more walks and seriously get back into intense yoga because it helps
  • Avoid all added sugars including honey and maple syrup until my inflammation has dissipated a bit more
  • Contemplate seeing a psychologist to address my excoriating disorder and stress issues
  • Fix my diet overall which includes following seasonality, eating a more diverse array of vegetables,  and keeping track of what I eat too
  • Read more books on eczema including ones whose contents I am on the fence about
  • Learn more about newer treatments including dupixent and eucrisa
  • Get my life together enough that I can participate in calls in the online eczema community program I am involved with

There are probably more pieces of my plan that I’ve forgotten and a better step-wise way to present them but I’m too worn out to care right now.

Sometimes the constant skin drying out or the fear that what I ate is hurtng  me, or the annoyance at having to adjust so many commonplace day-to-day activities like how my husband can touch me or how I can hold my baby really get to me. I can see why it’s so easy to turn to a medication that can quickly get rid of symptoms, yet for many of us, our skin conditions have become the result of such medications, which feels like a betrayal of the modern medicine world, like science has failed us.

I need to do a post on topical steroids soon, and how they work, and then read and talk about how the newer medicines on the market work and how they are faring. There is no miracle cure to illnesses and quick acting solutions can come with a price. It seems more and more important to show that there will be some level of struggle involved for those unlucky enough to be susceptible to this kind of condition.

“how doctors think” about eczema

assorted doctors tools
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A few weeks ago I finished a book called How Doctors Think by Jerome Groopman and oh boy do I have thoughts. First off I have to say that the book had its fair share of  downer moments because it had a lot of cases of patients with cancer who struggled with doctors to find plans of care that extend their life just a bit more.

But other than that it was full of all kinds of information about different schools of thought that doctors employ to help their patients. Two specific ones it mentioned included the evidence-based and algorithm-based approaches.

With the evidence-based approach, the doctor relies on existing research, especially those that have a large amount of studies behind them. The issue with this approach is that doctors often default to using said heavily-backed solutions without inquiring or considering less numerously-backed ideas. This could become a problem, say if a new drug has tens of studies done on it, all sponsored and paid for by the company that produces the drug, while an alternative medicine or treatment may have great results but only a handful of studies supporting it, In that scenario, it’s almost more of a research field monopoly,  rather that robust results that gives the drug the good reputation, causing the doctors to favorite it more. In relation to eczema, where these ideas can be applied is in understanding how to approach doctors in a way that doesn’t cause them to default to automatically prescribe topical steroids (the long standing, most heavily-researched atopic dermatitis prescription option) as the first line of action.

With the algorithm-style approach, the doctor can follow a flowchart style of logic that’s been proven relatively effective over time. Its basically like having a graph that has arrows from each option to a few subsequent options, like:

“Does the patient have X cluster of symptoms?

  • Yes = Prescribe drug A.
  • No = Run test 1.

Is test 1 positive?

  • Yes = Give drug B.
  • No = Run test 2.”

And so on, and so forth. The flaw with this approach is that it doesn’t allow the doctor to think outside the box, which Groopman argues can result in said doctor trying to fit a patient nicely into an existing “flowchart” result, even if there are some signs or symptoms that don’t quite match up with that diagnosis. This may be the case when someone has other co-morbidities too or when someone has common symptoms of two very different diseases (like this example of a woman who was using topical steroids and found out she had lymphoma). For this problem it can be useful to ask the doctor what are the best and worst case scenarios of diseases that fit the presentation of symptoms. Asking this can help a doctor think beyond their initial conclusion and more thoroughly work to rule-out other options.

Another significant point the author makes is that for doctors to really become better, they must remember their mistakes and use that vulnerability to inform their care. He gives examples of renowned doctors who literally have binderfuls of their mistakes that they reference to maintain humbleness and act as a forcing function to always push themselves to improve. This might be a more difficult conversation to have with your doctor as I imagine no doctor enjoys being asked, “so let’s talk about all the times you royally effed up with patients”.

One last subject the book addresses that I’ll bring up is the pressure doctors implicitly face when they accept any form of samples or gifts from big pharma companies. It’s not that all pharma-marketed medicines are bad, but that you want your doctors’ reasons for choosing a specific product to come from no other influence than that they believe it works and have seen that said products have good efficacy. This is why it can be hard to decide whether or not to use samples a doctor gives you as you don’t know that they really think it works or if they just happen to have them around from a sales pitch. A question to ask in this case might be “have you seen a lot of positive outcomes from use of X product?” Another way to foray into this territory with a doctor is to ask about long-term results, as well as what are any known side effects (this could apply to eczema-related products like topical steroids to non-steroidal creams or biologics or brand-name moisturizers). If something sounds too good to be true, it’s probably fairly new to the market and so the longevity of effects haven’t been tested. A further question to ask is if there are any cheaper off-brand equivalents because those usually only come out after something has been on the market for a while.

These are just a few of the points that the book made, that I’ve tried to connect back to how to talk with your dermatologist about eczema. There are more factors involved that could make the process more convoluted or impossible in some instances, but I do think these provide a light foundation to attempt to build a stronger relationship with the right doctor.

Speaking of the right doctor, I have an older post that goes more into making sure you feel comfortable and that you have a good rapport with your doctor, which was another huge point Groopman made in the book. He explained that a patient who is difficult to treat, simply by having complex issues that don’t respond to more common treatments, often ends up being resented by the doctors, and as a result gets worser care. The suggestions in the book for overcoming these kinds of doctor-patient relationship issues is to say something like, “I know my condition is difficult” or “I feel like we got off to the wrong start” to help try to make the doctor aware of their negative emotional bias.

On the flip side, a patient that the doctor likes too much may also get worse care if the doctor makes overly sympathetic emotion-based decisions like skipping tests to not inconvenience the patient or by avoiding procedures that may cause the patient pain, etc. To overcome this issue, it can be as simple as saying “please treat me like you would a patient you knew nothing about”, and hopefully that should provoke the doctor into making sure they’re as analytical and diagnostic as possible again.

I’d love to hear about any particular experiences you’ve had with your dermatologists in the comments, and whether or not you agree with my suggestions, and also from any doctors out there reading this.