03/06/2024
Today I listened to a webinar on skin manifestations related to inflammatory bowel disease. (It was sponsored by a company that uses evidence-based natural therapy for IBD. I've never used it or tried it...but I am open to it as I do have Crohn's disease.)
I am familiar with the skin issues that can come from Crohn's and I've had a few creep up over the years while the bowel was flared. But never psoriasis.
Then... when I started a biologic for Crohn's, at the recommended weekly dosing... after a few weeks, I developed psoriasis. On my tailbone area, that cracked and weeped, it was so bad. On my neck, face, inside my ears (oh that itch! 😫). On my scalp, shoulders. It got worse and worse. It was during mask wearing time so my face post-workshift was awful, leathery, hurting, itchy, dry, burning, ugly.
I told my specialist that I thought the drug was causing the problem. That the timing was not coincidental. That sure, there was a tonne of stresses going on with son moving away to go to school, and work and pandemic and vaccines etc etc. BUT that my gut was not flaring so it made no sense to be from the disease.
Her reply? 'Psoriasis can be a complication of Crohn's '. She WOULD NOT believe me.
Long story short...and a frustrating waste of time with dermatologist and useless lotions, shampoos, oils... I couldn't stand it anymore. I didn't ask, I just told my specialist that I was cutting the dose back to every 10 days (something she refused to give approval for when I suggested it initally).
**(Take note that at no time was my gut actually inflamed...which is important to my decision).**
After about a month of every 10 day dosing, my skin was now finally starting to settle down (without any help of topical stuff), and Doc suggested I get blood levels taken of the biologic.
(Oh? Why didn't we think of that before???🤔. Drug company paid for it, but I would have gladly paid out of pocket for that objective data!)
I took blood levels on day 9. And guess what?
It was at the VERY TOP of the therapeutic range. Which means that it was coming 'DOWN' from whatever level it peaked out on. 🤯
Which means... I was in supratherapeutic doses (ie above what's needed for effectiveness)!!!!! And when injecting every 7 days, it means I was probably in these very high levels most of the time. 😲
It was a no brainer to switch to every 14 days. Within weeks the psoriasis was gone all together. Gone. Vanished.
So it wasn't necessarily a paradoxical psoriasis from the biologic, but in my case, from the DOSE of the biologic. I remain on it still. (And my bowels are still fine too.)
So today ...to hear the medical doctor in this zoom webinar acknowledge that this reaction could happen?? I FELT HEARD! I posted a question about it and his reply was "I'm really sorry to hear what your doctor said. We as medical doctors have knowledge to guide people, but we are taught to believe in the patient with conviction since the patient has known themselves for years and years.". 🙌
Maybe this doctor's inital training in Jerusalem taught him differently than the training in North America. I don't know. But I felt HEARD.
I believe everyone knows their body best. And while I acknowledge that sometimes reactions to drugs could also be because of drug interactions, or food-drug or supplement-drug interactions, or timing, or stress in general, or other medical issues.... there is merit to listening to someone say "this isn't right".
And when a normal dose seems to cause issues...why can't other doses be tried? Research is only just starting to reveal all the genetic influences that affect how drugs are processed (called pharmacogenomics).
I've felt "wrong" before and didn't speak up.
Wanted to be a good patient.
Didn't want to rock the doctor-patient relationship. Didn't want to seem disrespectful.
This go around, I spoke up. And I'm glad I did.
We have to be our own advocates when it comes to asking for help. We don't need to be demanding or saying "Dr Google told me this is best". But I think we do have the right to stand up and say:
"I don't understand.
I want you to believe me.
Can you just check first before you write off my idea?
Will it hurt to try something else?."
(Respecting and acknowledging that in the back of all healthcare practitioner minds....they are thinking "is this going to cause medico-legal issues?"🤔🤔🤔)
I have learned there are parts to healing and healthcare that I don't understand. But it doesn't make them invalid, just not perhaps mainstream.
Personally, at this stage of my life, I am leaning more and more away from pharmaceuticals, using them when no other options exist. ESPECIALLY ones that go IN my gut.
I am paying closer attention to the foods I eat and how they affect me.
I recognize the impact on my health of sleep and stress and exercise and the people I am around. I take supplements that I am always changing and tweaking based on what I learn.
I'm not closed to trying "natural remedies" as long as they don't hurt me. I just know they are less likely to be recommended by my doctors.
All this to say I am evolving. And it's never too late for anyone to decide what they are willing to change to feel better. 🙌🥰
Appreciate your like and follow! Watch for my private group coming where discussions like this can get traction, more so than in this public space. ❤️
