|
Forums33
Topics44,197
Posts519,915
Members14,168
| |
Most Online3,221 Oct 6th, 2025
|
|
Administrator/owner:
John (Dragonslayer)
Administrator:
Melinda (mig)
WebAdmin:
Timo (Timo)
Administrator:
Brad (wolverinefan)
Moderators:
· Tim (Dotyisle)
· Chelsea (Kiwi)
· Megan (Megan)
· Wendy (WendyR)
· John (Cheerful)
· Chris (fyrfytr187)
|
|
If you want to use this QR code (Quick Response code) just save the image and paste it where you want. You can even print it and use it that way. Coffee cups, T-Shirts etc would all be good for the QR code.
|
|
|
|
Joined: Sep 2011
Posts: 37
Member
|
Member
Joined: Sep 2011
Posts: 37 |
Due to various life stresses/demands, I rarely pop on here anymore these days; however, due to my experience I can't leave your NSAID Q unaddressed. See, I took rx'd NSAIDS for 20+ years. The upside is they did allow me to function well enough to remain actively engaged in life & raise our boys, albeit with limitations.
However, around the 15+ year mark I began to have rather significant stomach pains...which I ignored. Long story short- my gut became so damaged, not only did the NSAIDS quit working altogether, but I also developed multiple drug reactions and/or allergies & became unable to tolerate any pain meds at all - including Tylenol and pain patches as well as most antibiotics, without intestinal bleeding. I became unable to digest foods: everything I ate traveled straight through in about 45 min. I lost 30+ lbs in a space of a couple months. I was very sick, very malnourished, in severe pain & very nearly died. I seriously looked like someone in a 3rd World country who was starving. I had trouble thinking clearly and often struggled to put coherent sentences together.
Conventional treatments failed, so in desperation I went to an Integrative Med dr who put me on IV nutrition & LDN which slowed the downward spiral; eventually over a period of months of clean "eating" (mostly bone broths at the time) I ever so slowly began to improve.
Unfortunately, although my gut began to heal, my AS only worsened until I was significantly disabled with only a few joints unaffected and after more than 3 years of trying various alternative approaches (including the No Starch Diet) I finally caved in to Humira. At the time I was so very disabled & in such severe pain, it was taking my DH 5 hours each day just to get me dressed/showered/undressed, let alone help with other basic daily needs in addition to his full-time job. I was using crutches on "good days" & a wheelchair for everything else.
On the 4th day after my 1st Humira injection, by God's kind grace I put my crutches down & have never looked back. I have had to use a wheelchair at times for longer treks, and I still get fatigued fairly quickly. But I now have a completely different life on Humira. I'm able to do stairs, walk, care for all my own basic dressing/undressing tasks, pick stuff up off the floor, sit at the table to eat, lift my grands, drive myself places....basically I'm completely independent & (mostly) functional again.
Bottom line- I would never, ever recommend NSAIDS long-term to anyone on the planet. I'm not sure what my AS progression would have been like without them, but the 4-5 yr nightmare I endured is not something I would ever want anyone else to go through, let alone someone who already has AS to deal with. I've often wondered if I'd have known about the No/Low Starch Diet in the years ago before I had gut damage (dr who performed colonoscopy said my entire colon looked like ground hamburger) perhaps it would've been effective for me. Who knows? And there may come a day when my gut has healed enough that I won't need Humira. Time will tell.
AS can be quite the journey; if I had it to do all over again, I would def opt for going all out in trying dietary approaches first & foremost. If that was not effective, I would still never give up really healthy, clean, low-starch eating since it turns out there are many other health issues that can arise other than just AS & what we eat makes all the difference.
I hope you never, ever have to endure NSAID damage & sincerely hope you find non-destructive options that are effective for you. Wishing you all the best-
AS 30+ yrs HLA-B27 positive Crohns (20 yrs of NSAIDS controlled AS but destroyed gut) Chronic spontaneous tearing of tendons & ligaments; limited walking ability Humira, LDN, LSD, L-Glutamine, multi-vit, vit d, vit c, adjustable bed, every pain patch and/or topical analgesic known to man,  Nortriptyline for pain.
|
|
|
|
0 members (),
1,228
guests, and
304
robots. |
|
Key:
Admin,
Global Mod,
Mod
|
|
|
|