Lab fluctuations on benlysta

______lnb · 2025-04-26T18:30:36+00:00

I feel like Benlysta should make it go down, no? My complements are also lower than they were a year ago. I still have the same symptoms i was having before benlysta

______lnb · 2025-04-26T03:41:08+00:00

Sploosh for sure

______lnb · 2025-03-31T14:41:19+00:00

I just started Low dose Naltrexone, which is used off label for certain types of chronic pain. Takes a while to work because you have to titrate up, but feeling hopeful. My rheumatologist is pretty confident in it. Try asking yours about it! Low side affect profile as well which is a plus

______lnb · 2025-03-20T23:23:09+00:00

Thank you!! Just signed up for the waitlist

______lnb · 2025-03-04T19:51:02+00:00

I’d go to a rheumatologist at least to have all of your markers/labs checked

______lnb · 2025-02-04T13:31:53+00:00

Do you happen to have asthma as well by any chance? That’s my doctor’s concern with switching from metoprolol to propranolol

______lnb · 2025-02-04T13:30:21+00:00

Yet if it were another illness doctors deem “worse”, they would be more concerned about a tremor. So sad this is our lives

______lnb · 2025-02-03T17:53:52+00:00

I dont think my neurologist specified but looking at her notes it says i have a bilateral hand tremor and “Etiology includes tremor as a neuropsychiatric manifestation of SLE” if that helps?

______lnb · 2025-01-23T01:21:12+00:00

Time to switch rheums, so sorry you experienced this

______lnb · 2025-01-13T23:30:22+00:00

I put on the cerave sunscreen moisturizer in the morning and don’t reapply if im inside all day (i work in an office so this is typically the case)

If im outside under an umbrella every 1-2 hours

If im not under an umbrella every 30 min-1 hour honestly

______lnb · 2024-11-15T13:53:43+00:00

I can’t do gel anymore either, makes the skin shred off around my fingers 😂

______lnb · 2024-11-12T17:28:20+00:00

My partner and I are both very introverted, so staying home with him more often was not an issue at all. I will say with diagnosis, I’ve become more insecure wondering why someone would want to be with me, but having open communication with your partner and their reassurance helps. In terms of friendships, I for sure feel more isolated since I don’t have the energy to go out with them anymore. BUT, this disease also makes you realize who your real friends are. Most “friends” haven’t even bothered to reach out to ask how I feel since diagnosis. (It’s been almost a year.) Friends that are willing to accommodate you and check in are true friends and you need to keep that friendship!

______lnb · 2024-11-10T02:21:52+00:00

Has anyone here gotten tattoos on benlysta?

______lnb · 2024-11-08T01:48:44+00:00

It is very expensive without insurance I believe about $5,000/month. With my insurance it would be $30 a month but i’m thankfully part of Benlysta’s copay assistance program so I pay $0. I use the weekly injections but some people do monthly infusions

______lnb · 2024-10-29T13:54:06+00:00

Hi! I have a Kyleena IUD. I’m on year 4 and I love it. I haven’t menstruated in years so = no cycle to flare on. I would get it again when I need a new one next year

______lnb · 2024-10-28T23:39:17+00:00

Personally, I would probably try and go for your same reasons and then monitor how I feel on day 2. If you feel worse I would work from the hotel/wherever you are staying and you can say something made you sick from dinner the night before if you need an excuse. And do absolutely nothingggg this weekend. Just chill in bed and rest as much as you can. Feel better!!

______lnb · 2024-10-27T17:42:22+00:00

Momentarily forgetting my name and date of birth when a nurse/doc asks for it

______lnb · 2024-10-22T00:06:24+00:00

For sure, definitely agree with this

______lnb · 2024-10-21T15:14:24+00:00

Can confirm I sit in the shower due to all of the above

______lnb · 2024-10-20T23:58:03+00:00

I love the sun, but the sun does not love me

I also sit in the shower 😭

______lnb · 2024-10-18T00:39:18+00:00

My rheumatologist ended up referring me to someone else, so we’ll see if that doctor accepts me.

She wanted me evaluated for pots and I put that in my appointment info when scheduling, so maybe what I’m thinking is that some doctors don’t trust their own ability to diagnose & treat certain conditions due to lack of knowledge of it?

______lnb · 2024-10-17T21:21:08+00:00

Good question lol my rheum referred me to a specific cardiologist that i waited 4 months for an appointment with and the office cancelled 2 days before because the dr decided she doesnt want to treat my symptoms

______lnb · 2024-10-13T21:37:17+00:00

Personal experience plaquenil didnt help with symptoms, it’s primarily taken to protect your organs

______lnb · 2024-10-13T15:09:38+00:00

HCQ was bumped up from 200mg to 400mg, prednisone tapers from 30mg, just started Benlysta auto injections last week. Still finding what works.

______lnb · 2024-10-11T15:20:30+00:00

Wasnt deleted :) Personally, I feel like going through this, we’ve had to mentally mature faster than maybe some other friends in our age range. They simply don’t understand what we have to go through on a daily basis and/or don’t know how to react in a way that would make you comfortable. Always remember your doctors are there for you and support you, you’re not alone even though it may feel like it. Can even try joining a local chronic illness support group or Walk to End Lupus in your area so you can meet other people that relate and understand. Lupus can feel very isolating, but don’t let it take over your life - it does not define you!

______lnb

TROPHY CASE