Hi Lam,
quiet so far, so I will share a few sleepless thoughts...
I guess for me it always comes back around to "who" said it?
Everyone shuffles the numbers to best-present & sell their agenda?
I remain hopeful, but have grown in distrust of all of these numbers...
No matter how I try to cut the mustard:
Yes I fear TNF blocking biologics further harming my body.
But I fear the accumulating intestinal damage of my unchecked disease more!
Can't live on oral corticosteroids forever?
Heck, I'm not even "me" on that wild roller-coaster-ride!
eek!
even if it was truly a substantiated peer-reviewed published study...
I still gotta take my 1/154 chances with escalated to weekly Humi jabs.
No, I had not read that anywhere.
Perhaps someone might share a link for interested sufferers?
I find little comfort, in the playing down of the numbers,
every time risk/benefit goes back on the table for discussion
in the lil room with your GI.
I find it cheap.
If you have no skin in the game, sure you can say it is no big deal.
4 doctors - 3 of them narrow specialists all could not see my DIL.
Everyone was way too book smart, no one demonstrated much sense.
Kept dismissing my Lupus, discounted because it is "too rare".
Someone has to get it!!!
Well, hello???
Even if biologics were to harm or expire 1/1000, causing cancer, I gotta do it.
I told my GI that it can & will be... a real nightmare for someone.
Someone is going to watch as their loved one,
gets stricken with a horrible incurable disease,
turns to a drug as treatment to back off the attack on healthy digestive tissue...
and the jabs or IV drugs will lead to their wasting and then demise.
came seeking help.
drug contributes to killing them.
My doc loves to tell me not 1 in 1000 get D-I-L.
at one point he told me maybe 1 in 4000.
totally dismissive
Yet, it has to happen to someone.
That one happened to me.
I live in fear each Humira jab.
I feeling brave in the moment, if not overall...
so I can tell you why right now.
this is only my opinion, forged through my personal unique experience:
This exciting new family of drugs is reducing bowel damage for lots of good folks.
But all treatment brings risks, including the risk that inflammation will keep smouldering and scar tissue accumulates until it goes untenable
if they do not work as we remain fingers crossed and wishin' on lucky stars.
I have more fear now, marching forward in my fight.
At a Remi infusion, a nurse is present and checking, the infusion takes 3-4 hours to load in the drug.
If a reaction manifests, this pro will quickly respond.
You will only have received as much quantity of this currant dose,
which was required to incite that reaction?
But I fear it because now with Humi my wife jabs me at home.
We are not health professionals with handy remedy.
Humira goes in for a ten count.
By the time I was to become aware of any negative effects with next dose,
I will have taken the entire dose with no option to interrupt if trouble shows up?
I have had bad drug reactions previously.
Ya, I am still standing, that much is true.
But for me, I struggle to trust biologics with my every next dose.
I do believe these drugs help to give me my best chance.
All treatment brings risk/benefit dilemmas!
What seems-to-be, kinda-working-for-now, may change.....
suddenly & without warning
Yes, biologics have harmed me deeply.
Yes I know they can and will give someone cancer + whatever?
Yes, I gotta roll those dice. It is my informed & considered adult opinion.
I alone have skin in my personal war.
(but it hurts my wife too)
And I am sorry... but I am wary of those with nothing at risk,
talking in minimizing terms of my risk whilst they remain safe again.
I gotta try to be open to all of the diverse treatment options.
Each must choose their own correct path, & will bear the brunt.
YMMV
I am late & losing in a looong protracted war.
A local-lady-cutter told me she will meet me at ER.
Instead of lunch, she offered me a panproctocolectomy.
I am sticking with the big risky drugs.
We each have to figure it out.
wishing you only well,
peace,
w
ps
leave no stone unturned in your personal fight!
