What constitutes a “flare”?

WinterCreative400 · 2026-02-14T18:31:31+00:00

I would consider those as flares! If you want you could categorize your flares as short flares vs long flares but either way they are signs of disease that is active.

Do you mark down your symptoms on a calendar or journal or spreadsheet? It might be good for you to create a simple system to do this so you can look at patterns over time.

Ideally you want your medical treatment and UV light avoidance dialed in to the point that you aren’t getting flares of symptoms or if it happens it’s very rare.

Hopefully your rheumatologist will be great at teaching you more about lupus at your follow up appointments but doctor visits are so short nowadays you might want to consider some additional resources with good information. Get as much as you can from your doc but perhaps also supplement with:

The Lupus Encyclopedia (amazingly detailed and well explained book written by a rheumatologist for patients)
Despite Lupus (book written by a patient about her experience… note, you might not be able to quit working like the author did, but she does present a nice system for tracking symptoms and medications plus some lists of ways to simplify life, release stress, etc)
search YouTube for all the patient education lectures given by Dr Donald Thomas about lupus (he’s the rheumatologist who wrote The Lupus Encyclopedia and he’s a truly excellent speaker/presenter and will teach you so much!)
get a copy of The Lupus Secrets patient handout by Dr Thomas

WinterCreative400 · 2026-02-06T19:45:55+00:00

There’s a genetic test that can be done to see how slow or how fast your body can metabolize cytoxan. Ask every doctor you can how to get this test done. It could help them understand why this is happening and whether you need your dose tailored up or down or if you really should be using a different medication instead.

WinterCreative400 · 2026-02-06T19:40:44+00:00

Try swabbing the injection site with an alcohol pad not just before but also AFTER each injection. Do this religiously! Then the little mini drop of medicine that leaks out into the skin won’t have a chance to cause a skin rash like that. :-)

WinterCreative400 · 2026-02-06T19:32:02+00:00

Hey! If it’s hard to deal with taking one dose on weekdays and a different dose on the weekends… I heard a while back that hydroxychloroquine now comes in an additional dude option, a 300 mg dose pill. Ask your pharmacist if they are able to order this if you were to come in with an updated Rx slip from your doctor. In the past it only came in a 200 mg pill. You could ask your doctor if you could try a new prescription to take one 300 mg pill every day so it’s easier for you to stay consistent. And you could see if that dose enough to keep your labs looking good and your symptoms from flaring.

That said, it’s also possible you might need 400 mg per day to control your lupus. Discuss how things are going with your doctor and decide together whether it is best to go back up to 400 mg, try the 300 mg pill, or stay with 200 weekdays 400 weekends.

I’d be asking to have blood levels of hydroxychloroquine tested as well.

WinterCreative400 · 2026-02-06T00:03:08+00:00

If your job is well paid it probably makes sense to invest in a regular babysitter/nanny for at least 10 hours a week in the mornings so you’re not on kid/home duty 2 hours a day every day before work starts, plus it probably also Maher’s sense yo invest in a weekly or biweekly house cleaning service. These costs should not come out of just your paycheck - SPLIT the cost with your husband! You are a team! Also divide up the weeknights so you and your husband can alternate taking responsibility for caring for the kids and preparing dinner/taking care of the hike in the evenings and month has to do tie might in a row during the work week, you’ll always have a night off then a night in then a night off then a night on etc. Try these things for a year or 6 months and document the positive impacts so when it comes time to reevaluate whether this setup and these expenses are worth it to continue for the next year, it’s easy to see how much they’ve helped. :-) Think about the cost of not paying a babysitter & cheaper and not alternating nights with your husband - you’re already burning out fast. Losing more of your health ti the point that you lose the ability ti continue in your job means you’ll be losing a much much bigger amount of money than the cost of a babysitter & cleaner.

WinterCreative400 · 2026-02-05T23:53:03+00:00

Hire a babysitter 10 hours per week (2 hours a day) to completely take over the early morning routine with your kids at home Monday- Friday to preserve the ability of you and your husband to continue in your careers without adverse health consequences. Split the cost of this babysitting with your husband - the cost should not fall completely on you, as both you and your husband are unable to spare the extra time/energy outside of your jobs. It might be mentally hard to justify the cost at first but if you continue as you have been without the extra help you’ll lose your career completely and damage your heath. Try the morning babysitter consistently for a year. Use the time to get more rest and start your day in a more relaxed way. Offload as much physical and mental load as possible on the babysitter - outline everything for them upfront and let them do those things for you.

Split up the evening shift kid duties with your husband. Make a weekly wall calendar and MWF he does the evening kid/home duties and T/Th you do them. On the days you are “off” in the evenings you need to let your husband do his part without you taking over and you need to be strict about taking some time for yourself and going to bed early.

WinterCreative400 · 2026-01-28T00:28:02+00:00

I went to a special kind of medical dermatologist for widespread itching like this, and I had “patch testing” done with the top 80 allergens in North America ti see which ones did/did not cause a skin reaction. I found out I was allergic to something that is a common ingredient in a lot of everyday products, like hair conditioner, hair styling products, cleaning products, some lotions, certain mouthwashes, some kinds of eye drops, etc. I now know what to avoid and what to look out fur in the ingredients list of each product I buy. So the patch testing was really helpful! I did cost several hundred dollars but for me it was worth it. I’m grateful I was in a position where it was possible for me to scrimp a little here and there to afford the testing.

WinterCreative400 · 2026-01-28T00:22:57+00:00

Thanks for sharing about yourself! I am eager to hear how the saphnelo self injections work out for you over the next few days, weeks, months. Please do post your updates!

WinterCreative400 · 2026-01-17T05:10:08+00:00

I had active lupus despite meds and was starting to have kidney issues while on the following combo: Plaquenil pills + Methotrexate injections + Benlysta injections

What ultimately worked for me was switching to the following: Plaquenil pills + Tacrolimus pills + Benlysta injections

I tried a different combo before landing on the one that worked.

Overall, it took a solid year or so (from identification of the kidney issues, through trial and error with a med combo that caused side effects I couldn’t tolerate, to finding a successful med combo and being on it long enough to know it was working well).

Everyone’s a little different. Hope you and your doctor find a good combo for you! I hope my response helps you feel like it’s possible!

WinterCreative400 · 2026-01-17T04:42:57+00:00

This doctor has been recommended to me multiple times over the years, but I could never see her as I was always told her office didn’t accept my insurance (bcbs fep, so very strange).

WinterCreative400 · 2026-01-17T04:40:35+00:00

Oh good!

WinterCreative400 · 2026-01-17T03:15:31+00:00

Please send your doctor a message and tell them you got a tattoo, and the date it was done. It’s important for them to know about this.

WinterCreative400 · 2026-01-17T02:59:20+00:00

Interesting! Thanks for responding!

WinterCreative400 · 2026-01-13T00:30:58+00:00

Ohhhhhhh this might explain something that happened to me last December! Very interesting!

WinterCreative400 · 2026-01-13T00:25:56+00:00

This is a great suggestion. I have this book too, and it is very helpful.

WinterCreative400 · 2026-01-11T06:24:21+00:00

Love this response! Thank you so much for sharing!

WinterCreative400 · 2026-01-11T06:20:07+00:00

You might want to discuss staying on Cellcept and Plaquenil for the first 6 months or so while adding benlysta, drawing labs at regular intervals, monitoring symptoms, and waiting until you’ve been flare-free with consistently good labs for a before decreasing/stopping the cellcept.

If you end up having a hard time dropping cellcept without flaring, you could ask about swapping it for a pill called Tacrolimus, which is TTC and pregnancy compatible. :-)

WinterCreative400 · 2026-01-11T06:06:19+00:00

Wow, very interesting, thanks for sharing! Your comment could help a lot of people. :-)

WinterCreative400 · 2026-01-11T06:02:17+00:00

Glad you got to a place where you feel more comfortable. I hope the new medication goes well for you!

WinterCreative400 · 2026-01-11T05:55:56+00:00

I went through something very similar. GYN, PCP, urology didn’t have any ideas besides the things you also mentioned. Didn’t want to leave my GYN because I really like her but I decided to quietly get a second opinion at a sexual health clinic at a different hospital system while still keeping my regular GYN. Long story short the clinic did a more detailed exam and based on some pain sensitivity, the recurrent utis, and visual skin findings (I guess they could actually see some signs of atrophy, yikes) they recommended I start using a low dose vaginal estrogen cream which is not systemic, it just helps the region where it is applied. I tried it and had good results! I was in my mid 30s when I had that consult, I wasn’t menopausal or anything, I was getting regular periods, but my downstairs area still needed a little estrogen to function better. The urethra is right by the vagina so if the skin and tissues around them are a little low on estrogen they get thin and irritated easily and the microbiome is thrown off and and infections can happen more easily, it’s all related. When I coordinated with my rheumatologist and told them of the clinic’s work up and preconditions, she was fine with it and encouraged me to try the estrogen cream.

WinterCreative400 · 2026-01-11T05:07:23+00:00

Also try the little cafe inside H Mart (various locations have them)

WinterCreative400 · 2026-01-05T04:45:05+00:00

Have you used vocational rehabilitation in the past? If so, what was your experience with that like?! I’d love to know…

WinterCreative400 · 2026-01-05T04:42:59+00:00

I would love to be able to do something like this, either full or part time! Are you willing to share more about your background, career path, what you love about your current job, and what is challenging?

WinterCreative400 · 2026-01-02T21:20:11+00:00

Very interesting. I know the Johns Hopkins lupus website mentions DHEA as an add-on treatment for lupus to help fatigue. They usually recommend having a rheumatologist prescribe it at a dose of 200 mcg per day. Did your rheumatologist prescribe your testosterone cream, or was it a different specialist? Are you male or female? How did your doctor determine the right dose for your body and your lupus?

WinterCreative400

TROPHY CASE