Auto-Immune Disease(s): A Thread

[joe dirt 285]

5 hours ago, Basil said:

Sorry to just butt into your business but my wife has Crohn’s and fought it like a Mfer from age 20 to about 35. She ended up with 2 resections, Remicade and all that and was still flaring up. She ended up controlling it with diet. She popped up allergic to all sorts of common food - gluten, dairy, etc. She cut that out and has been pretty good ever since. No more drugs or flare ups.

all good my dude.

my kiddo ended up having a diverting ileostomy done in the fall to give her meds a better chance of working. plan to take it down within 6 months assuming the meds start to finally do something. we tried controlling by diet, but a teenager is gonna do teenage things so it wasn’t successful. i’m hoping as she gets older, she’ll get wiser and give diet change real effort. 

[HeHateMe 883]

Anyone have thoughts on LDN for CFS/Lupus?  I’ve read a mixed bag and I don’t want to put my gf through a drug she doesn’t have to take, so any personal experience would be appreciated.

[Basil 749]

On 1/24/2024 at 6:04 PM, joe dirt said:

all good my dude.

my kiddo ended up having a diverting ileostomy done in the fall to give her meds a better chance of working. plan to take it down within 6 months assuming the meds start to finally do something. we tried controlling by diet, but a teenager is gonna do teenage things so it wasn’t successful. i’m hoping as she gets older, she’ll get wiser and give diet change real effort. 

An ileostomy should give her motivation, even for a teenager.  I've had one* and was extremely motivated to get rid of it.  Hope she does well.

* ileo and teenager

[Sbbruin 21,785]

On 1/24/2024 at 10:17 AM, Basil said:

Sorry to just butt into your business but my wife has Crohn’s and fought it like a Mfer from age 20 to about 35. She ended up with 2 resections, Remicade and all that and was still flaring up. She ended up controlling it with diet. She popped up allergic to all sorts of common food - gluten, dairy, etc. She cut that out and has been pretty good ever since. No more drugs or flare ups.

I have been battling ulcerative colitis for about 6 months.  It's gotten really bad.  I had treated it for years with remicade, which I was taking for ankylosing spondylitis, but the Opdivo immunotherapy for cancer just caused it to go haywire.  It has just been crippling how difficult it's been.  I sometimes have 10-12 movements/day, most of which don't produce much, but the urge is there and the urgency is absolutely immediate.  So I'm going off remicade for the first time in almost 20 years and starting Rinvoq.  Praying to god for relief.  I'm just beat down by this.  Looks like I'm going to have to cancel my trip to Park City next week.  I'm just not functional enough.  Work has been a bear, but at least I can hit the head in a moment's notice.  

Anyone have experience with Rinvoq?

[Sbbruin 21,785]

Man I have been struggling with ankylosing spondylitis lately.  I had been on remicade for almost 20 years and it worked great.  But the immunotherapy for cancer treatments sent my ulcerative colitis into hyperdrive, so I was switched ot Rinvoq a couple of months ago.  It worked great for the UC, but it's not working the AS.  My back and neck are a fucking trainwreck right now.  Doc thinks maybe switching to Stelara could work.  But this pain is brutal.  Doc prescribed hydrocodone in the interim, but I don't like taking it while at work.   Will pop one when I get home.  But this sucks.

[Shoxthemonkey 1,976]

Damn, Bruin, I missed this earlier. How are you getting along 6 months later? Better, I hope.

[Brisketexan 104,787]

Anyone have experience with Hashimoto’s disease? Just got a diagnosis in our family.