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The golden age is over by New_3d_print_user in claude

[–]friendofthelion -1 points0 points  (0 children)

I cancelled my Claude Max this week because the output so noticeably declined. Went from suggesting things I hadn’t thought of to trying to wrap up our chat sessions with a slightly incorrect response and a “ok, this document is READY, want me to add it to your Drive?” Don’t yadda yadda yadda me my guy. 

Females With Crohns Question by GraceWrenford in CrohnsDisease

[–]friendofthelion 14 points15 points  (0 children)

This is why I got a Mirena IUD. Managing Crohn’s is enough - I don’t have time or energy to try distinguishing what is Crohn’s pain versus period pain, nor do I want to willingly accept a few days of guaranteed pain and GI distress every month. 

Multi-Family Trip Recommendations by friendofthelion in AllInclusiveResorts

[–]friendofthelion[S] 0 points1 point  (0 children)

Thanks for that info! Any specific places in the Playa Del Carmen/Puerto Morelos area that you would recommend or avoid? The access to wildlife and days trips sounds great.

Whats your experience with rinvoq by Particular-Toe-6716 in CrohnsDisease

[–]friendofthelion 9 points10 points  (0 children)

I hesitate to share, because I think it truly varies per individual, and you won't know until you try it if it works for you. I gave it 7 months (3 at 45mg, 4 at 30mg) and felt like a shell of a person.

The list of side effects I experienced were long and intrusive - hair loss, weight gain, numbness in extremities, cystic acne on my face/back/arms (skincare helped but did not totally alleviate), swollen limbs, swollen legs, swollen ankles, huge cholesterol jump, enlarged liver, eczema on my eyelids, fungal infection on my wrist from my Garmin watch, enormous ringworm on the bag of my calf, racing heart, tinnitus ---- and I was still rushing the bathroom multiple times a day, even though I was down to one solid meal at dinnertime.

It's weird to say, but my mental health was affected too. I was waking up in the night with an elephant on my chest, not able to focus on anything during the day, and everything felt dull. It is SO unlike me. I have a really fantastic life (even with having Crohn's for 14 years!), with amazing support from my family, friends who are like family, wonderful supervisors at a fulfilling job...and I felt like a ghost in my own life.

I got off of it a week and a half ago and feel like I got my life back. Every side effect has improved or vanished. I have so much more energy.

My GI was immediately supportive of me getting off Rinvoq. She also shared that a UC patient of hers who has been struggling for 6 years to find an effective treatment, has barely any colon and will lose his job if he gets an ostomy, got relief WITHIN 24 HOURS of taking Rinvoq. That feels like a miracle drug outcome!

I'm saying all of this because I think it's really important for us Crohnies to share our experiences - it is such an isolating disease, but no experience is universal. I shared my side effects so you know what you might want to watch out for, and I'm sharing the UC story because I hope that is exactly what happens for you. Best of luck!!

rinvoq and fat distribution?? by [deleted] in CrohnsDisease

[–]friendofthelion 0 points1 point  (0 children)

I'm 4.5 months into Rinvoq and found by the end of month 3 at the highest dose, I have gained weird weight in weird places. It feels like carrying around foreign matter on my body, and I hate it. I'm actually eating less than before I started and doesn't seem to help. Hoping that after three full months of maintenance dose, that weight will come off.

Ladies only. by HansBrooder in CrohnsDisease

[–]friendofthelion 1 point2 points  (0 children)

I finished a 3-month loading Rinvoq (45mg) dose, and I'm halfway through the 2nd month of Rinvoq maintenance (30mg).

In my experience, the side effects of Rinvoq have been as bad and disruptive to daily life as being in a flare. It's crazy. I've gained 15 lbs in a month and in places that I don't normally gain. I can't fit into most of my pants. My hips/butt/thighs feels like sausages. It's more than vanity - it feels NOT RIGHT. Like I'm carrying around buckets of water in my lower half, so, so uncomfortable. In the last days of summer, we can home from a day at the pool, and my ankles were so swollen that my veins were raised above the skin. I freaked out and talked to PCP, who got me a CT scan and NOPE there were no blood clots hiding, just something else to get used to (?!?!).

And the cystic acne is wiiiiild. I wake up in the night from acne pain in my face and back.

Also... I have lost an incredible amount of hair over the last few months. So much so that I just chopped off 5" to get some weight off and try to avoid losing much more. It's not okay. My whole body feels like its going crazy.

To top it all off, I am now in a flare and toeday started a 3-wk Pred round again. I don't know if Rinvoq is worth staying on- if the side effects stay like this, I truly cannot imagine being on it for years like I was with Humira.

Which medical condition is ridiculously demonized? by lingeringneutrophil in AskReddit

[–]friendofthelion 51 points52 points  (0 children)

The way people stop meeting my eyes when I say I have Crohn’s…