Updated 10 October 2026
At a glance
- The Hospital for Special Surgery says to let your surgeon know if you are aPL-positive or have been diagnosed with APS, so the team is aware of your increased risk of clotting.
- A 2025 matched study in the orthopedic journal linked lupus to a higher risk of surgical complications, with an odds ratio of 1.48.
- The table, four steps and question lists below turn those general points into dated lines about your own operations and flares.
- Lupus Journey keeps energy, joint pain, rash notes, sleep hours and lab dates in one dated history, and its Doctor Report exports a one-page rheumatology summary.
Lupus can complicate surgery in ways that are easy to miss when a procedure is booked months ahead or arranged quickly after an injury. A surgeon sees the operation, a rheumatologist sees the lupus, and the weeks in between often belong to neither until you bring them together.
This guide gathers what hospital, research and patient sources say about surgery and lupus, then builds a table of operations and lupus activity, four steps for asking for a pre-operation review, a guide to telling recovery days from flare days, questions for the surgeon and the rheumatologist, and a summary page of past operations. It organizes information for your conversations, and your clinicians decide what applies to you.
What HSS, Johns Hopkins and NIAMS say about surgery and lupus
The sources describe specific points to raise and leave decisions to clinicians. The Hospital for Special Surgery advises that you should let your surgeon know if you are aPL-positive and/or if you have been diagnosed with APS so that he or she is aware of your increased risk of clotting. A second page from the Hospital for Special Surgery says that patients with lupus, for example, are particularly vulnerable to avascular necrosis, also known as osteonecrosis, a condition in which blood supply to the bone is cut off and the bone dies.
The Johns Hopkins Lupus Center says that if you plan to have any surgeries or medical procedures, you should discuss them with your doctor so that your doctor may decide on the appropriate course of action. The NIAMS gives a safety line that applies at every stage: never stop your medicines or treatments without speaking to your doctor.
The American College of Rheumatology released an updated guideline, from the organizations' 2017 joint guideline, that includes recommendations for people with systemic lupus erythematosus among others, for elective total hip or total knee arthroplasty. The recommendations concern medicines and are for clinicians, so this guide leaves them to your rheumatologist and surgeon.
A 2025 matched comparison in the orthopedic journal reported that, after adjusting for covariates, SLE was significantly associated with a higher risk of surgical complications (odds ratio 1.48, 95% confidence interval 1.13 to 1.93), acute postoperative hemorrhagic anemia (OR 1.48, 1.05 to 2.09), and increased 30-day (OR 2.11, 1.30 to 3.40) and 90-day (OR 1.59, 1.11 to 2.26) readmission rates. Odds ratios compare groups and say nothing about the course of one person.
The pages agree on one practical point: your surgeon and rheumatologist should both know your history. Dated notes make that easy to share.
Lupus Journey (by Health Journey Labs) can supply the dates behind each operation: the Daily check-in carries energy, joint pain, rash notes and sleep hours, and My Labs keeps result dates for antibody panels, inflammatory markers and blood counts.
A table of lupus activity before and after each operation
A table of operations and lupus activity gives each procedure one row and records how your condition behaved around it. It turns a vague memory such as "I was bad afterward" into dates.
Disease activity table around each operation, by Lupus Journey
| Column | What to write | Why it helps |
|---|---|---|
| Date and place | Month and year, and the hospital or clinic | Lets a team request records |
| Procedure | What was done, in the words on your paperwork | Avoids mixing up similar operations |
| Weeks before | Energy, joint pain, rash and sleep in the month before | Shows where lupus stood going in |
| Weeks after | The same four items for the weeks after | Shows the course of recovery and any flare |
| Lab dates | Results reviewed around the procedure | Ties symptoms to numbers your team can see |
Start with the most recent operation and work backward as far as your records go. A row with a date and a procedure name is useful on its own, and the other columns can be filled as you remember or find notes.
Keep the same four items in the before and after columns, so a reader can compare them directly. Pain, fatigue, rash and sleep are what rheumatologists and surgeons tend to ask about, and a short phrase for each is enough.
The guide to starting tracking lupus symptoms helps you begin the daily record that makes the weeks-before column possible for future procedures.
In Lupus Journey, the Flare Tracker flags a day clearly worse than a usual week with onset, intensity and a short note covering pain, fatigue, rash or fog, so past flares can be matched to the rows.
Four steps to ask for a pre-operation review of your lupus notes
A pre-operation review means that both your surgeon and your rheumatologist see your lupus notes before a planned procedure. Four steps help you ask for it.
Steps to ask for a pre-operation review
Lupus Journey suggests telling your rheumatologist's office once the date is set.
- When the date is set, tell your rheumatologist's office about it and ask whether they want to see you or your notes before then.
- Update the operations and flares table with your recent weeks, and add your latest lab dates.
- Ask the surgeon's office who will read the table, and send it to that person.
- Write down any questions that come up, and take them to both teams.
Step one follows the Johns Hopkins Lupus Center advice to discuss planned surgeries with your doctor so that your doctor may decide on the appropriate course of action. The table gives the conversation something concrete to work from.
From Lupus Journey, we recommend sending the table and not describing it by phone, because a written page with dates is less likely to lose detail between teams. Keep a copy for yourself.
If you are aPL-positive or have a diagnosis of APS, put it at the top of the page, as the Hospital for Special Surgery advises telling the surgeon. Medicines are a matter for your clinicians, and the NIAMS reminder never to stop your medicines or treatments without speaking to your doctor applies throughout (Lupus Journey checklist). Contact a clinician promptly if your symptoms change sharply before the date.
The Daily Journal in Lupus Journey takes free text or voice, so questions that come up at night can be captured in a few words and added to the list for both teams.
Surgical recovery days and flare days with lupus, kept apart
After an operation, tiredness and pain are expected, which makes a lupus flare hard to spot. Keeping the two apart in your notes helps a clinician judge what is going on.
Table of recovery days and flare days
Lupus Journey shows what to note on recovery days and flare days.
| What to note | A recovery day | A possible flare day |
|---|---|---|
| Pain | Near the wound or operated area, easing over days | New or in new places, such as joints or chest |
| Energy | Low, slowly improving | Lower than the recovery pattern would explain |
| Skin | Healing at the site | New rash or sun-triggered change elsewhere |
| Other signs | Expected swelling or bruising | Fever, new swelling or other changes your team named |
| What to do | Follow the surgical team's recovery plan | Note the date and tell your rheumatologist |
Use the table as a note-taking aid. It cannot say which kind of day you are having, and a clinician should be told about anything that worries you.
The Hospital for Special Surgery mention of avascular necrosis in lupus is a reminder that new pain in a bone or joint area deserves attention. Say it plainly in your notes, with the date and the place, and raise it at the next contact.
The 2025 orthopedic journal findings on higher readmission rates in the matched comparison show why early contact matters. A call about a worry costs less than a readmission, so keep both teams' numbers handy. The guide to getting through a lupus flare when you look fine helps with the days that are hard to explain.
Both columns can be built from the same entries in Lupus Journey: the Daily check-in carries energy, joint pain, rash notes and sleep hours, so the weeks before and after each operation come from the same lines.
Questions about lupus for the surgeon and the rheumatologist
Surgeons and rheumatologists see different parts of the picture, so questions sorted by clinician make each conversation shorter. Choose the ones that apply.
Questions for the surgeon and rheumatologist, by Lupus Journey
- For the surgeon: here is my operations and flares table, and is there anything in my lupus history you want to review with my rheumatologist?
- For the surgeon: what signs after the operation do you want to hear about right away?
- For the surgeon: who is my contact on your team if something changes at home?
- For the rheumatologist: how should we follow my lupus in the weeks before and after the operation?
- For the rheumatologist: which lab results do you want to see beforehand, and which dates should I bring?
- For both: who coordinates the plan between you, and how will you share information?
The first question reflects the Johns Hopkins Lupus Center suggestion to discuss planned surgeries with your doctor. The second follows from the Hospital for Special Surgery and orthopedic journal pages, which point to clotting risk and complications as things teams watch for.
If you have antiphospholipid antibodies or APS, lead with that. If you know of other conditions, such as bone problems or kidney involvement, list them on the page. Teams can only weigh what they know.
Put the question you care about most first, and write the answers in the clinician's own words. Ask for anything unclear to be repeated. The guide to what to bring to a lupus rheumatology visit helps with the rest of the appointment.
The AI companions in Lupus Journey already see the weeks you logged, so they can help word these questions from your own entries, while your clinicians interpret what the details mean.
A summary page of past operations with lupus and the weeks around them
A summary page takes the table's main points onto a single sheet. It is the page to hand over when a new surgeon, a hospital or an emergency team asks about your history.
A good page has five lines. The first states your lupus diagnosis, any antiphospholipid status and your rheumatologist. The second lists past operations with years and places. The third notes how lupus behaved around the most recent one. The fourth gives your latest lab dates. The fifth gives the date you wrote the page and the number for your rheumatology office.
Keep it to one side of paper so that it can be read quickly. Bring the full table in case a question needs detail. Update the page after every operation and every flare worth mentioning, since an old page can mislead as easily as a missing one.
The Hospital for Special Surgery advice to tell your surgeon about aPL status and the Johns Hopkins Lupus Center advice to discuss planned procedures with your doctor are both easier to follow with the page in hand. It can also help in an unplanned situation, when a team meets you without your usual records.
Share the page with your rheumatologist before any planned date, so that both teams work from the same facts. If your symptoms change sharply, contact a clinician without waiting for the appointment.
For the pre-operation conversation, My Care Team in Lupus Journey keeps visit prep with what to ask and bring, and the Doctor Report exports a one-page summary of dates, energy, sleep, pain and how you functioned.
How Lupus Journey can help
A paper notebook and one printed page can hold this record, and many people start that way. When you want flares, labs and clinician notes in one dated history that surgeons and rheumatologists can read, the best lupus apps guide compares the options.
Lupus Journey is a personal lupus tracker from Health Journey Labs on the App Store and Google Play. For lupus and surgery, it lets you keep the weeks around each operation beside your daily symptoms, so the table is filled from entries. After a few updates, the page shows how lupus behaved around each procedure and gives every clinician the same starting point. Below is what you can use and how each part helps.
- Daily check-in — Logs physical symptoms, emotional state, nutrition, sleep, exercise, meds, external factors; app-specific items: energy, joint pain, rash notes, sleep hours; read together with the rest of the logged history.
- Flare Tracker — Logs flag a day clearly worse than the usual hard week, onset, intensity, short note; app-specific items: pain, fatigue, rash, fog; read together with history across weeks (one-off spike vs repeating pattern).
- Daily Journal — Logs free-text notes, voice entry; app-specific items: what the day limited, partner talks, leftover guilt after you canceled; read together with scores and other logged history (adds context).
- My Meds — Logs medicine names, timing, dose; app-specific items: steroids, antimalarials, immunosuppressants, other options you already use; read together with energy weeks, sleep, pain, the rest of the tracked history.
- My Labs — Logs result dates; app-specific items: antibody panels, inflammatory markers, blood counts, other tests; read together with fatigue, function.
- My Care Team — Logs clinicians, short visit notes; read together with logged history; used for: visit prep (what to ask and bring); notes during the visit; review afterward.
- Doctor Report — Logs one-page summary exported from logged history; app-specific items: dates, energy, sleep, pain, how you functioned; read together with the history already logged; visit type: rheumatology.
- AI companions — Logs Clara (general chat), specialist companions; app-specific items: knowledge, fitness, nutrition, relationships; read together with your logged history (companions already see it); used for: a calm partner script; a softer work line; a listening ear after a wiped day.
- Learn — Logs short education topics, prompts; app-specific items: fatigue, sleep, flares, pacing, sun, visit prep; read together with your own logged weeks.
- Weekly Goals — Logs one small aim, whether it held.
- My Assessments — Logs structured check-ins beyond daily scores, onboarding life and social context; read together with ongoing history.
- Period Tracker — Logs start and stop dates, flow, how heavy or light bleeding felt; read together with flares, sleep, energy, everything else logged.
- Food Tracker — Logs meal or drink lines, caffeine, alcohol; read together with energy, sleep, pain.
- Weight Tracker — Logs scale or body notes; read together with energy, sleep, pain.
Everything you log builds one history, and insights get stronger as it grows. Custom symptoms let you add your own labels.
We make Lupus Journey at Health Journey Labs. This guide is educational and does not replace medical advice. Diagnosis, medication decisions, and urgent care decisions belong with your treating clinicians.
Sources
- Hospital for Special Surgery: Antiphospholipid antibody positive people having surgery
- Hospital for Special Surgery: Surgery for people with rheumatoid arthritis and inflammatory arthritis
- Johns Hopkins Lupus Center: Aspirin
- NIAMS: Lupus, diagnosis, treatment and steps to take
- American College of Rheumatology: Updated guideline for total hip and knee replacement
- Orthopedic journal report: Systemic lupus erythematosus and surgical outcomes (2025)
FAQ
The answers below draw on the sources cited in this guide, and the app they mention is Lupus Journey (by Health Journey Labs).
Why does lupus matter for surgery planning?
A 2025 matched study found that lupus was associated with a higher risk of surgical complications and readmission, and hospital pages advise telling your surgeon about antiphospholipid status. Both teams should know your history.
Entries in Lupus Journey build one shared history, so the weeks before and after a procedure are already written down and a summary can be drawn from them when you prepare.
What should I tell my surgeon?
Tell them you have lupus, whether you are aPL-positive or have been diagnosed with APS, which clinician follows you and how you have been recently. The Hospital for Special Surgery advises raising clotting risk early.
The Doctor Report in Lupus Journey exports a one-page summary of dates, energy, sleep, pain and how you functioned, which gives you a starting draft for what to hand to the surgical team.
What does the odds ratio of 1.48 mean?
It compares groups: in the 2025 matched study, people with lupus had higher odds of surgical complications than people without. It describes a group and cannot say what will happen to you, which is a question for your clinicians.
Because Lupus Journey keeps your own dated history, the focus stays on your weeks and your pattern, which is what a clinician can use when you describe how lupus behaved around past operations.
Should I stop any medicines before surgery?
The National Institute of Arthritis and Musculoskeletal and Skin Diseases says never to stop your medicines or treatments without speaking to your doctor. Medicine plans around surgery are made by your surgeon and rheumatologist together, so bring your questions to them.
My Care Team within Lupus Journey keeps clinician names and short visit notes, so you can record what each clinician said about your plan, who to call with questions and the date of each conversation.
How do I tell recovery from a flare?
It can be hard, because both bring tiredness and pain. Note where the pain is, how your energy compares with the expected recovery pattern, and any new rash or fever, then tell your rheumatologist the dates.
The Flare Tracker in Lupus Journey flags a day clearly worse than a usual week, with onset, intensity and a short note, so a possible flare is marked with a date and a few words.
What is avascular necrosis and why is it mentioned?
The Hospital for Special Surgery describes it as a condition in which blood supply to the bone is cut off and the bone dies, and says patients with lupus are particularly vulnerable. New bone or joint pain is worth reporting.
Notes in the Daily Journal of Lupus Journey can record where a new pain appeared and when it began, saved with the date, so you can tell your clinician exactly what you noticed.
What belongs on the summary page?
State your lupus diagnosis and any antiphospholipid status, past operations with years and places, how lupus behaved around the latest one, your lab dates and your rheumatologist's number. One side of paper is plenty.
The Daily check-in in Lupus Journey carries energy, joint pain, rash notes and sleep hours each day, so the line on how lupus behaved can be drawn from entries and not from memory.
Can I use the table for a minor procedure?
Yes. A minor procedure can still matter to a new team, and one row with a date and name takes little effort to add. Keeping every procedure in the table makes the page easier to keep current.
Entries in Lupus Journey stay in one dated history, so a small procedure and the days around it can be found later without searching through separate notes or papers, and the row for it is quick to write.
Who coordinates between my surgeon and my rheumatologist?
It varies, so ask directly. Ask each team who owns the plan, whom you should call with questions and how they will share information, then write the answers on your page.
Custom symptoms in Lupus Journey let you add labels in your own words, such as who to call after surgery, so the answers you are given are saved beside the dates they apply to.
Can a tracker or chatbot decide anything about my surgery?
An app or an AI chat can organize dated entries and help phrase questions ahead of the visit. Decisions about surgery and medicines belong with your surgeon and rheumatologist, who can examine you.
The AI companions in Lupus Journey can see your logged history, so they can help draft a short question list from your own entries while your clinicians interpret what the details mean.
What if my symptoms change sharply before or after the operation?
Call a clinician promptly and say when it began and what changed. A feeling that you might harm yourself, or severe symptoms, call for your local emergency number straight away, without waiting for a callback.
A flagged day in the Flare Tracker of Lupus Journey, with a Daily Journal line, gives whoever you contact the date, the intensity and what changed, so the first minutes go to the problem itself.
How often should I update the summary page?
After every operation, every flare worth mentioning and every new lab result you want clinicians to see. A date at the bottom makes it obvious how current the page is, and easy to replace.
Because Lupus Journey keeps every entry in one history, you can refresh the page from recent entries before an appointment, and the insights strengthen as more weeks are recorded, which keeps the page current with little retyping.
Can a relative help me gather the history?
Often, yes. A relative may remember dates, places or recoveries you have forgotten, and can help request records. Name the part you want help with, as a specific ask is easier for them to meet.
A note in Lupus Journey can hold what a relative remembered and the date you wrote it down, so you can see later which details came from records and which came from memory.
Should I worry about privacy when I track symptoms?
A lupus record can hold rashes, kidney lab results and photos of skin changes. Lock the phone, keep rash photos in a private album, and choose which pages a new rheumatologist, employer or school actually needs.
Entries you add to Lupus Journey are your own health notes. Check the app's privacy policy for how data is stored and handled. Nothing in this article is medical advice.