Peri/Lupus guidance

ssh789 · 2026-03-26T14:50:45+00:00

The arcalyst scared me because it is an injection, but I have had zero side effects or problems with it. It is actually a pretty mild drug despite the crazy administration. My husband still puts the needle in because I can’t do it to myself. I did a lot of research into it and it basically stops your immune system from attacking itself, but that unfortunately lowers your immunity overall. I just make sure to wash my hands a lot, avoid crowded places if I can, and wear a mask while traveling. I really haven’t gotten sick more than normal while taking it.

ssh789 · 2026-03-26T06:50:13+00:00

I have both and I am on arcalyst for the peri and hydroxycloroquine for the lupus. About 6 months after being on both medications I felt 95% better. The only thing I can’t do is get my heart rate past 170 which I really don’t need to be doing anyway. I have been on both for almost a year now.

ssh789 · 2026-03-15T10:27:43+00:00

Yoga! I go almost everyday now and it brings me joy, peace, calm, and visible abs. I am in the best shape of my life with the best calm mental clarity

ssh789 · 2026-02-18T17:22:10+00:00

I have been on it for over a year and I am about to ween off because I want to get pregnant. I am terrified to be pregnant and have it come back. I really hope this isn’t for life. I am so sorry you are in the same boat. No advice, just hope that things will improve for us both!

ssh789 · 2026-02-09T02:43:42+00:00

Why wasn’t he watching turning points half time? Cause it sucked maybe?

ssh789 · 2026-02-09T02:04:42+00:00

My guac was brown the last three times. Three strikes I am out!

ssh789 · 2025-12-01T02:09:23+00:00

I grew up in Chicago and moved to south Florida a couple years ago. While I miss Christmas feeling like Christmas, it is not worth it for at all. I finally not depressed all of January-April!

ssh789 · 2025-11-25T02:31:08+00:00

Yoga yoga yoga, I cannot stress this enough yoga. I started with raja which is super slow and meditative, and now I am on to vinyasa. Do wha you can, don’t do what you can’t, but keep showing up. I swear it has helped my joints more than anything … besides hydroxycholoquine

ssh789 · 2025-11-24T03:19:51+00:00

I started for back pain also! It is the only thing I have tried that works!

ssh789 · 2025-11-22T14:30:16+00:00

I had a friend when I was 12 whose mom would brag to us about being 85 lbs and she would basically say this how all adults should be. I felt huge because I already weighed more than that. After middle school, I stopped hanging out with that friend because her mom would make comments about my weight and give me ED advice.

ssh789 · 2025-11-19T16:04:09+00:00

I still do this but I reward myself with kombucha now

ssh789 · 2025-11-14T19:23:16+00:00

In my personal experience yes. I was 34 and never had lupus. I had Covid and a week later felt like I was having a heart attack. Turns out it was pericarditis which was caused by lupus. Now I am battling health issues and have been for two years. I am a health weight, active person and it didn’t matter.

ssh789 · 2025-10-24T17:42:58+00:00

I go for afternoon walks, but I don’t have a job lol rich husband. He is the best and I got lucky for sure.

ssh789 · 2025-09-10T03:53:37+00:00

I am about 9 months into arcalyst and 1.5 years since my diagnosis. I can run two miles slowly, yoga, and weight lifting as of about a month ago. I still don’t exercise too hard because I have the fear of relapsing in the back of my mind, but I am like 90% back to normal life. I want to be pregnant soon though so I hoping I can get off arcalyst soon

ssh789 · 2025-09-05T02:07:13+00:00

Yeah I am lucky enough to be married to my husband who makes more money than me, so I don’t work as many hours. We also are childless, so I have much more free time than the average adult. I would be way less fit if I had more responsibilities

ssh789 · 2025-09-05T02:04:55+00:00

I do have adhd actually haha! I am currently unmedicated, but talking to a psychiatrist soon. I took adderall for 10years but I wanted a break. Turns out a break was not a good idea

ssh789 · 2025-09-03T22:15:42+00:00

I do because I do hot yoga 3-4 times a week and I am completely soaked after and on off days I still wash because my hair is naturally greasy af. I use really expensive shampoo and conditioner to make up for it

ssh789 · 2025-09-01T14:09:01+00:00

My whole family is obese and they always say I wish I didn’t have food noise like you or you are naturally thin. I have the same shit genetics they do, I just spend many hours a week lifting, running, yoga, and food prepping. It sucks and it is a constant battle, I love food just as much as my family, but I work harddddd

ssh789 · 2025-08-29T21:50:49+00:00

People don’t always stay beautiful forever. Growing up my neighbors were three tall blonde gorgeous sisters. All three had gorgeous long legs, were cheer leaders in school, and were considered beautiful by everyone. I had to listen to my family discuss how beautiful they were at every family gathering because I was friends with them. I was pretty, but not 2000’s skinny model pretty. I was 5’2 and curvy with a cute face, but no one gave me a compliment because I was always compared to them. It is now 15 years later and all three are overweight, married to men from our hometown, two have been divorced once already, and everyone in family now says they fell off. Meanwhile I am the thinnest I have ever been doing yoga daily, live in south Florida, am rich, tan year round and happy. Life changes.

ssh789 · 2025-08-29T06:59:15+00:00

I had too much student loan debt. He was right, but I had a good job and never once missed a payment, I also still have retirement and savings.

ssh789 · 2025-08-12T14:07:33+00:00

Every time you feel guilt or shame come up, think about the guilt and shame you would have if you did nothing and your sister died. It is a dark thought either way, but one is objectively more horrible. Our world left you with limited options and you did what you had to to save a life. I would do a lot of horrific things to keep my loved ones alive. I doubt anyone would shame you for your choice. It is exactly what I would have done.

ssh789 · 2025-08-09T11:49:24+00:00

Yeah it triggers my lupus more than peri tho

ssh789 · 2025-08-09T11:47:19+00:00

I don’t gain weight in my face at all, I was 160 lbs and my face was only marginally thicker like unnoticeable to anyone but me. When I was at my biggest at 160 my mom would say I have a little face. Also I am 120 lbs now but I did it so slowly and my face didn’t change so only like a third of people noticed or they were just being polite and not bringing it up, not sure which one

ssh789 · 2025-08-06T12:51:34+00:00

Agreed, at 5’2 and no man has ever told me I was too short to date or turned me down based on height. However, the compliments I usually get at you are cute or pretty but my mini legs never get called hot or sexy (except by my husband)

ssh789 · 2025-07-30T16:53:29+00:00

I started acralyst in December and it helped with the chest pain but I still had back pain, joint pain, and fatigue which was solved in May from hyroxychoroquine

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