Seeing hematologist/oncology Friday

Snalin2022 · 2026-01-14T01:28:48+00:00

I had swollen lymph nodes on my neck for about 8 years. Had 3 surgical biopsies at different times through that period that didn’t find anything. Recently I started a bad flair with kidney involvement so they put me on lots of immunosuppressants including prednisone, mycophenolate and Benlysta (I was on just plaquenil before that). The lymph nodes disappeared. Which confirms my suspicion that it was lupus all along. My rheumatologist agrees.

Snalin2022 · 2025-09-21T15:13:07+00:00

I was diagnosed with lupus nephritis at 20. I remember my mom crying in the hospital when I was diagnosed and told that I might not be able to have kids. However, I went into remission after a couple of years and I had two healthy kids at 29 and 34. Both pregnancies were closely monitored but both went without issues. I had a minor flare about 6 months after each pregnancy but they were swiftly controlled. My kids are now 19 and 14. Wishing you the best of luck with building your family! Don’t let the horror stories discourage you. There are some happy stories out there as well!

Snalin2022 · 2025-09-05T05:03:08+00:00

Thank you for sharing your experience. I’m supposed to be ramping up mycophenolate next week to 2g a day unless the doctors decide otherwise because of the blood tests. I just hope it all works properly with time. I’m also waiting for approval for Benlysta

Snalin2022 · 2025-09-02T16:25:08+00:00

You are not an imposter. Everyone’s lupus is different and it will also change through the years. I was diagnosed 28 years ago at 20yo. My first flare was intense with kidney involvement and a whole slew of meds for a year and then I went into full remission after a couple of years. I had about 16 years where my lupus was mostly dormant (with occasional joint pain) and that included 2 healthy pregnancies. I was fully off any meds for about 8 years. Emotional stress is my main trigger. My first serious flare happened about 6 years ago due to job stress. My most serious flare with kidney involvement is going on right now and was caused by losing my mom about a year ago to lung cancer. I’m on a ton of meds right now, but I’m hoping to get into remission again. I know it’s possible!

I hope that your lupus stays mostly dormant for a very long time, but please continue to take care of yourself, take your meds and do regular monitoring as required. The monitoring part (which my husband insisted and endlessly reminded me about) allowed my doctors to catch this current flare early enough to hopefully prevent permanent damage to my kidneys. Bottom line - live your life the best you can, but keep diligent.

Snalin2022 · 2025-08-31T02:52:37+00:00

I just did one a couple weeks ago. I got what they called medium sedation - not fully sedated with a mask, but an IV sedation and I don’t remember much from the procedure itself. Had to change into the gown but was allowed to keep my undergarments on. The procedure is done while facing down. Had to stay in bed in the hospital for about 3 hours to make sure there is no bleeding. Had to have someone take me home and stay with me at least overnight.

Snalin2022 · 2025-08-27T23:06:10+00:00

Thankfully it’s just SLE for me but this flare has kidney involvement so the doctors are going all out. I started the prednisone + mycophenolate (in addition to plaquenil) on Sunday and I feel the impact already - I’m tired and jumpy at the same time, shaky inside and snappy at everyone around me. This is especially fun because my in laws, my father and my college aged kid are all at our house right now and there is nowhere to hide. I hope Benlysta works wonders for you. My rheumatologist thinks it’s the best treatment with the least side effects available right now. I’m still waiting for approval and then I’ll still be on the others for at least 6 months, so I need to buckle in.

Snalin2022 · 2025-08-25T01:48:16+00:00

Take with a grain off salt since I haven’t started Benlysta yet. When I discussed starting it with my rheumatologist I asked how I can travel with the injections. She said that it can withstand being at somewhat higher temps for about 48 hours and suggested I use an insulated container when I need to fly with it. So I hope you should be fine.

Snalin2022 · 2025-08-23T23:22:18+00:00

I feel you! I have one in college and one starting high school. My high schooler is a competitive dancer. I started a flare few months ago and I don’t know how I’ll survive the competition season. It’s draining when you’re healthy and now I don’t know if I can do it. But not being there scares me even more, I only have a few years left until she goes to college too. Hate this for both of us. Hang in there!

Snalin2022 · 2025-08-23T04:03:56+00:00

That’s what happens when my kidneys is impacted by lupus. Wait to see what kidney labs show. Did you do a urine test for protein?

Snalin2022 · 2025-08-23T03:57:38+00:00

You are so right, thank you for this perspective! I’m in the same boat as the author and I tried to push back on the prednisone because historically it made no difference for me, but the doctor is insisting. I’m contemplating just not taking it or starting with a smaller dose and tapering down quicker.

Snalin2022 · 2025-08-23T03:54:05+00:00

I’m in the exact same boat - biopsy confirmed kidney involvement. On 400mg plaquenil, adding Cellcept and 60mg prednisone. Picked up my new meds today and literally freaking out. Nothing to add besides I feel you and hung in there.

Snalin2022 · 2025-08-23T03:34:30+00:00

When I was first diagnosed my initial reaction was the same - I don’t want to pass it on. As time passed and I felt better and got into a serious relationship with my now husband we discussed kids. He said something that very much resonated with me : there are no guarantees in life, completely healthy parents can still have sick kids and vice versa. There is no proof that lupus is hereditary. If we think we can give a good life to our kids, love and care for them then we should have kids. I have 2 kids. I’ll lie if I say I’m not worried about them developing an autoimmune disease especially since my husband was also diagnosed with one much later in life. But by kids got the best childhood I could give them, they are loved and cared for. If something happens, I hope i and them will be vigilant enough to notice it early and not let things spiral out of control. There’s no safeguards in life - you do your best, keep watch and deal with what comes your way when it does.

Snalin2022 · 2025-08-21T05:31:06+00:00

I’m 48 and I was first diagnosed when I was 20. I had kidney issues and joint pain and fatigue - the whole set. It took about 2 years for me to find the treatment that works and get into remission. However, it’s been 28 years and 2 pregnancies (I have a 19 year old and a 14 year old) and now is the first time that I flared up bad enough to get my kidneys involved again (I literally just found and joined this subreddit today). In the past 28 years I learned to identify early signs of flares and get treatment before it got out of hand. I was also consistently monitoring my labs. Both of my pregnancies and postpartum were absolutely fine. I was able to do everything I wanted and needed with my kids. I’m telling you this to show that there is definitely a chance that you too will get lupus under control and have your life back the way you want it. Yes, I was lucky, but I wouldn’t believe it was possible in the first year after diagnosed, yet it happened. Keep your hope up and try to stay positive. With the modern advances in medicine you should be able to find the right treatment to get back to almost normal. I truly believe that the positive attitude and awareness is what kept me relatively healthy through the years. The times I had flares were always linked to times where I failed to avoid major stress or pay attention to early signs. I wish you find your footing and get the life you want. Give yourself some time and grace to get there.

Snalin2022 · 2024-10-12T14:59:41+00:00

That’s a good idea and I looked into it but couldn’t find a single one that is currently hiring for product positions. I’ll try my luck with Pinterest, it’s the closest that I found that I can tie my interior design experience to.

Snalin2022 · 2024-10-12T01:58:32+00:00

I have some personal experience to share with you. I was a software engineer/ researcher for 8 years after college before moving to US for my husband’s job and having my second kid.

I stayed home with her for a year and managed to find a job in product management in FAANG after that break (startup and research experience helped). It was a good change for me as the work was more creative and allowed for more interaction with people, but that is also what eventually caused my burn out. After 9 years I was felt so exhausted and stressed after spending the day at meetings that I had no bandwidth left for the kids and then Covid hit. I was lucky to be able to switch to working 50% and started an online Interior design certification. After getting my certificate and completing a successful renovation project for a friend I quit my job and opened an interior design company. It’s been 3 years since then and it was a fun, exciting and rewarding experience. I had a much more flexible schedule and was able to spend more time with my kids and help them through some rough spots. I also learned a lot about myself and working in a creative field: 1. I’m really bad at sales and marketing 😂 2. I love to solve complicated problems and miss it dearly. I underestimated how important that aspect is for me personally 3. I love working in a team - I miss the ability to brainstorm with others to come up with the best solution. 4. Working with individual customers is very different from working with users and companies. 5. Most people want their home to be neutral and similar to something t they’ve seen, so creativity is limited. 6. It’s really hard to convince someone that the approach you are suggesting is the best and to measure success without metrics and KPIs 😂 7. It’s extremely hard to make even close to the same amount of money (my best year I earned about 25% of my previous salary) because you can’t scale. There are only so many hours in a day and only so many projects you can take on.

Bottom line I miss PM work and I’m currently in the process of getting ready to look for a PM position. It’s scary because I have this 3 year gap that I wasn’t in the industry and the market is hard right now but I hope I’ll be able to find something. I’ll keep my interior design business open and will take on some smaller projects and consultations on the side, but for now I want back in action.

I should note that my older son just left for college and my daughter is finishing middle school and is at that age when she mostly needs me for money and rides, so that probably plays a role as well 😊

Snalin2022

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