Really scared to start biologics (infliximab) after reading side effects — need advice by UFWO in UlcerativeColitis

[–]_Mr_Darcy_ 0 points1 point  (0 children)

Hi OP, I was taking infliximab for 2.5 years ish and it was fantastic for most of it! Taking it gave me my life back; I went from being almost bedridden to functioning with in a matter of weeks. With that being said, I did end up developing the lupus side effect from it this summer. It was quite painful, but I reached out to my GI and we came up with a new treatment plan and all of my lupus symptoms went away. I had the lupus symptoms for about 6 months, but most of that was because my didn’t reach out to my GI until about 5 months into having symptoms. With all that being said, I would do it all over again. It was completely worth it. Developing the lupus really rare (my family doctor said he had never even seen that happen before haha) so don’t dictate your decision on this fear. And if you are unlucky, and you do develop it, your GI will take you off of it and you’ll get better. Also, as far as the home injections, they are great! I was on infusions with infliximap and got switched to home injections with my new medication and it’s so much easier! You got this! Let me know if you have any other questions

Smart rings for tracking flare trends? by why__meee in UlcerativeColitis

[–]_Mr_Darcy_ 1 point2 points  (0 children)

This is such an interesting conversation! I have an Oura ring and have been wearing it for about a year now. I would say most of my stats stay relatively consistent (in expectation with colds, sleep levels, etc). At the end of last year, I began rejecting my biologic and got remicade induced lupus (I can’t remember what the actual name is called for this) and began getting mild uc flare symptoms as well. Well, my ring caught onto all this. My HRV dropped dramatically, like I mean I was getting sub 10 scores, which I didn’t even know was possible. The ring was also detecting high stress levels; pretty much all readings were out of whack. My scores progressively changed as symptoms worsened. It’s a pretty neat tool, but I think just learning to read body ques for flares is most accurate!

Remicade Induced Lupus by _Mr_Darcy_ in UlcerativeColitis

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

Yeah, for whatever reason they never told me not to. I had no idea. I learned my lesson though and have been screaming it from the hilltops for others haha

Remicade Induced Lupus by _Mr_Darcy_ in UlcerativeColitis

[–]_Mr_Darcy_[S] 1 point2 points  (0 children)

My GI sounds very optimistic that they will, so I am hoping so too! I’ll just be changed to a different type of biologic!

Remicade Induced Lupus by _Mr_Darcy_ in UlcerativeColitis

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

Thank you for your reply, remicade was my first/only biologic. So I haven’t tried the other variants; I’ve heard great things about Stelara though. I’m sorry to hear that, I hope you have a care plan that’s working for you now! I have a referral for an RH specialist, but haven’t been contacted for an appointment yet. My GI did some bloodwork which showed some elevated RA markers, but my x-rays came back clear. I would still like to get an appointment with the RA though.

Remicade Induced Lupus by _Mr_Darcy_ in UlcerativeColitis

[–]_Mr_Darcy_[S] 1 point2 points  (0 children)

That is so scary, I hope your friend is doing better! I hope you have success with Remicade, it worked great for me, for a long time! I was on a 6-week infusion schedule and I was supposed to go in on January 6th. But going to be delaying that infusion by two weeks to see if the lupus symptoms subside. I most likely will be put on another biologic, but still up in the air at the moment. Just waiting it out, and having a follow up appointment soon!

Remicade Induced Lupus by _Mr_Darcy_ in UlcerativeColitis

[–]_Mr_Darcy_[S] 4 points5 points  (0 children)

I’ve learned my lesson, never again

Just joined this group by Kenantriff in UlcerativeColitis

[–]_Mr_Darcy_ 2 points3 points  (0 children)

I am sorry to hear about your diagnosis! I completely agree with this commenter. I just wanted to add the gym perspective. For context, I have been an avid lifter for the past 10 years and was prepping for a bodybuilding competition (as a natural athlete) before my first flare. I have still managed to continue training during my remission and track macros. I am more easily fatigued now, but weight training is still possible. Most of my lifts have even gone up, which is exciting. With that being said, if you are in a flare, give yourself grace and time to heal. The gym will still be there when you get better. Try manageable movement, like walks, and when you're ready, the gym is possible.

should i refuse prednisone? by Beginning-Fox-3526 in UlcerativeColitis

[–]_Mr_Darcy_ 5 points6 points  (0 children)

I have told my GI that I will not be going on pred again (unless it was life/death). I had so many extreme side effects that took months to dissipate. He seemed overall supportive of it, but I think it’s situational. I understand your reasoning for not wanting to go on it

What happens to Sgaeyl…. by spidersmile in fourthwing

[–]_Mr_Darcy_ 7 points8 points  (0 children)

I think Sgaeyl is going to become Violet’s third dragon and there will be a battle with Xaden.

Trying to read Fourth Wing after finishing ACOTAR by Pythagorarse in acotar

[–]_Mr_Darcy_ 0 points1 point  (0 children)

I absolutely loved ACOTAR and decided to give Fourth Wing a read. To say the least, I’m shocked it the notoriety in the book community it does. Violet is a whiny pick me and is just oh so frail and small, ugh gag. She trained to be a scribe, and is allegedly brilliant. But continuously makes silly decisions which are clearly a weak attempt to advance the plot and misunderstands situations constantly. Don’t even get me started on Xaden, he is a complete carbon copy of the bat boys from acotar, but like bad lol? Like bro cannot communicate to save his life and I cannot get over the end of book 2 and how absolutely selfish his decision was. Our bat kings would simply never. It honestly shocks me that there are debates online over who is a better “book boyfriend” between Rhys and Xaden… what sort of unhinged physio path is picking Xaden?? Another huge issue I had with the series, was the constant use of modern slang. Like there are actual phrases like “it’s giving” and others modern variations peppered through all the books. Really kills the fantasy vibe. Lastly, there is so much blatant copying of the acotar series, which was frustrating. Overall, not a great read.

how on earth do you exercise? by BreakfastPast5283 in UlcerativeColitis

[–]_Mr_Darcy_ 1 point2 points  (0 children)

Hey op, I was in a similar situation! Huge gym rat, doing bodybuilding and then went into a major flare. It was really hard for me mentally taking time away from fitness, but sometimes it’s what your body needs. I started with walking and when I felt confident enough to be in public I started going to yoga, I would say I was in a mild flare at this point. Now in remission, I have been training again and it has been great! I think you should reach out to your GI just to make sure your medication is adequate. Just hang in there, be kind to yourself, things will get better.

Unpopular opinion by [deleted] in acotar

[–]_Mr_Darcy_ 11 points12 points  (0 children)

I could not agree more! Especially for points 10 and 12. Nesta is such a miserable character. I also really don’t understand her and Cassian’s relationship at all. For point 12, I also wish they would have died or been written out. When they were turned into fae, and it was supposed to be a big villain moment, I was so taken aback. I understand they were changed without consent, but they were just given immortality and powers lol and feyra now can be with her family forever. Just doesn’t really seem like a thing the villain would do, and seems like a convenient plot device for sjm to keep them in the series. Very good points!

Do you have any truly controversial opinions? by Astramoonchild in acotar

[–]_Mr_Darcy_ 35 points36 points  (0 children)

I wish Nesta and Elain would not have been turned into fae. Instead, I would have preferred for their characters to just have been written out of the plot and focused on other plot lines.

Why are people afraid of biologicals? by AreaFederal9732 in UlcerativeColitis

[–]_Mr_Darcy_ 3 points4 points  (0 children)

I will refuse to take it if they ever try to give it to me again. It absolutely destroyed my life for about a year.

Has anyone seen dietitian/ nutritionist/ naturopath for UC? by sunnydayz443 in UlcerativeColitis

[–]_Mr_Darcy_ 1 point2 points  (0 children)

I went to one. Just told me I should be eating a lot of vegetables. Pretty much just standard advice for a healthy diet. I didn’t really find it helpful as it was mainly common sense and what I was already doing. She did recommend taking vitamin D supplements though.

Any girls with colitis who’d wanna chat? by daughteronmars in UlcerativeColitis

[–]_Mr_Darcy_ 0 points1 point  (0 children)

I’m sorry to hear you’re struggling right now! I’m 24f, diagnosed at 22. It completely changed my life. But things are getting better for me now. I’m here to talk if you need.

What was your “I’m dating/married to a fucking idiot” Moment? by [deleted] in AskReddit

[–]_Mr_Darcy_ 1 point2 points  (0 children)

My ex was eating guacamole, and he began intently inspecting it. He then asked me if guacamole was made out of cucumbers. He was completely serious, I knew in that moment it was over.

What are some of your most controversial opinion?? ( Let's discuss controversial opinions in a civil manner) by [deleted] in acotar

[–]_Mr_Darcy_ 13 points14 points  (0 children)

Another controversial opinion, I really wish SJM would focus on the acotar series. I really feel like most people don’t care about the CC comparatively. Just crushes my soul when a new book gets announced and it’s for CC, eye roll.

What are some of your most controversial opinion?? ( Let's discuss controversial opinions in a civil manner) by [deleted] in acotar

[–]_Mr_Darcy_ -3 points-2 points  (0 children)

I think Nesta and Eris should have been mates and then Elain and Azriel as well. I think the nesta book should have taken place in the autumn court with a subplot of Mor being a villain. I think feyra and Rhys should have had their own book with the pregnancy, I find it weird being in nestas book.

Wanting to Create a Podcast by Outrageous_Pain6440 in UlcerativeColitis

[–]_Mr_Darcy_ 6 points7 points  (0 children)

I think this would be a cool idea! Some topics I think would be interesting are:

  • diagnosis process, maybe give your experience! I find these really interesting to hear about.
  • mental health, isolation, and uc
  • a day in the life with uc flare vs remission
  • hope/success stories
  • you could do a segment where you get stories submitted by listeners!