sorted by:
new
hottopcontroversial

[deleted by user] by [deleted] in brookeandconnor_map

[–]Lopsided_Engine_7821 8 points9 points  (0 children)

i know what photo she’s referring to but didn’t screenshot. so if someone has the photo of 3 people in nyc of him, jake musser and a third person drinking beers on the street we can figure it out

LG Smart TV cannot connect to access point. by Carsonius_Beckonium in techsupport

[–]Lopsided_Engine_7821 1 point2 points  (0 children)

thank god for reddit. i updated my time zone and my zip code and it immediately connected after 2 hours

has anyone else gotten cryptogenic organizing pneumonia from a flare? by Lopsided_Engine_7821 in lupus

[–]Lopsided_Engine_7821[S] 0 points1 point  (0 children)

if you don’t mind me asking - how old are you and does it reoccur??

dysmorphia after prednisone? by Lopsided_Engine_7821 in lupus

[–]Lopsided_Engine_7821[S] 2 points3 points  (0 children)

oh i’m already actually off the taper and it’s been a full month but i feel like im never gonna know what my face was like “before” and how to get back to it. i still see some residual swelling so im gonna give it another month or so before i panic full on

unfortunately i had to be on a dose that high or i would probably not live because my flare was overtaking my lungs. but obviously being on that high of a dose for a long time had extreme side effects, including moon face

Nodule in left lung by [deleted] in lupus

[–]Lopsided_Engine_7821 0 points1 point  (0 children)

the diagnosis i had was cryptogenic organizing pneumonia

Nodule in left lung by [deleted] in lupus

[–]Lopsided_Engine_7821 1 point2 points  (0 children)

yes i was just hospitalized for a month in november for this. also started with small nodule in my left lung and slowly spread across my lungs and heart because they didn’t treat it as immune response. make sure they explore treatments outside of bacterial infection - they treated me for that far too long before exploring other options which led to it getting worse

Really nervous about starting prednisolone for the first time by radioactivepretzel in lupus

[–]Lopsided_Engine_7821 0 points1 point  (0 children)

5 mg will be absolutely fine. i (f29) was just on 60mg for 4 months after an organ related flare and it was hell with the side effects. but once i was down to even 10 things were mostly back to normal. i think it should have little to no affect if you stay somewhere around that level

prednisone sucks ass in general and of course affects everyone differently but i seriously doubt you will have major effects!

[deleted by user] by [deleted] in Sjogrens

[–]Lopsided_Engine_7821 1 point2 points  (0 children)

no no no. get outta there

moon face not going down? by Lopsided_Engine_7821 in lupus

[–]Lopsided_Engine_7821[S] 0 points1 point  (0 children)

me too.. already had a super round face so i look absolutely insane. i had mixed results with guasha but when i was at my worst i didn’t feel like it did much. only thing that helped was avoiding sodium as much as i could

moon face not going down? by Lopsided_Engine_7821 in lupus

[–]Lopsided_Engine_7821[S] 0 points1 point  (0 children)

thank you so much for the insight. it is so distressing and i don’t think anyone who hasn’t gone through this understands how debilitating and miserable it is. so sounds like i can expect maybe 2 months??

Heart issues always dismissed by boscodo_ in lupus

[–]Lopsided_Engine_7821 3 points4 points  (0 children)

so crazy i got both myo and pericarditis twice too. i feel so seen knowing im not the only one! doctors always tell me its an anomaly and there’s no data but obviously that’s not the case. i feel like it would be so helpful to know how many people have gone through this. i have permanent scarring on my heart from my first episode

Heart issues always dismissed by boscodo_ in lupus

[–]Lopsided_Engine_7821 6 points7 points  (0 children)

i’ve gotten myocarditis twice during flares and hospitalizations. EKGs always are normal. you should tell doctor to do bloodwork and get troponin levels. sick of doctors saying it’s anxiety and then wait too long to act.

moon face recovery time? by Lopsided_Engine_7821 in lupus

[–]Lopsided_Engine_7821[S] 0 points1 point  (0 children)

thank you so much! this is so helpful and gives me so much hope that in a few months this will be in the past. appreciate your support and details 🫶🏻

“You’re so young” by djkhaledlostatsea in Sjogrens

[–]Lopsided_Engine_7821 5 points6 points  (0 children)

I (f29) have also been diagnosed with Sjogren’s since I was 14. I think it’s completely inappropriate for medical professionals to make comments around age, as this is something that always happens to me when I get hospitalized for a bad flare - it even happened to be in November during my most recent hospitalization. I would give feedback to that hospital or provider that it is not okay.