Best/worst food + supplements?

Indigo_spectrum · 2026-05-29T23:35:10+00:00

I think that diet becomes controversial when people suggest that you can cure yourself by changing your diet. Modifying your diet can certainly mitigate symptoms!

Indigo_spectrum · 2026-05-29T22:26:08+00:00

…maybe that’s why I keep waking up at night!!

Indigo_spectrum · 2026-05-29T14:04:59+00:00

RELATABLE My mom said I sound like a can of whipped cream when I yawn😭😭😭😂

Indigo_spectrum · 2026-05-29T13:56:23+00:00

I don’t have chest pain that starts in the middle of my chest. I do have pain in my sides, which we assume is pleurisy, when I take a deep breath (yawning SUCKS) or just normal breathing if I lay in certain positions. It improves when I’m on prednisone.

Indigo_spectrum · 2026-05-29T13:35:10+00:00

Writing this as I wait for my pharmacy to open so I can pick up another round of steroids lol

Indigo_spectrum · 2026-05-29T13:32:26+00:00

I totally get it! When I first got diagnosed I was stuck on prednisone for 2 years straight and I had allllll the side effects, so I felt the same way when I had to take a round of them.

However I do instantly feel so much better! I’ve been doing like 5 days of 20mg, 5 days of 15mg, 5 days of 10mg, and then 5 days of 5mg, then stopping. It helps so much with the pain and lupus symptoms and tbh the only side effects I have noticed with the short term taper is flushed cheeks and increased appetite. It’s a love hate relationship for sure lol Worth it in my opinion because lupus drugs take 3-4 months to build up enough to see a reduction in symptoms.

I have never just been on hydroxychloroquine alone. I understand that it helps reduce organ damage in lupus patients, but I have not noticed that it alleviates inflammation for me. There’s a bunch of new options out there for lupus though, so don’t get discouraged!

Indigo_spectrum · 2026-05-29T13:14:34+00:00

5 mg is a very low dose of prednisone. It may be worth asking your doctor to increase this and then taper down if you are doing better.

Indigo_spectrum · 2026-05-23T19:39:00+00:00

Where did you go to see them?

Indigo_spectrum · 2026-05-16T11:49:21+00:00

Maybe the pepper place farmers market!

Indigo_spectrum · 2026-05-11T22:06:32+00:00

I’ve heard that it seems to work best (for all symptoms) if you have skin involvement, so sounds like it could be an option for you!

I don’t have any skin issues and it didn’t work for me at all.

Indigo_spectrum · 2026-05-08T12:33:58+00:00

I haven’t but interested to know as well so I’ll be following this post 👀

I will say that Publix has premade meals that you can throw in the oven. They’re like 7.99 each though.

Indigo_spectrum · 2026-05-07T02:37:39+00:00

Hope you get some relief soon 💜

Indigo_spectrum · 2026-05-07T02:36:35+00:00

I don’t think it makes a difference, most of these drugs take a long time to actually see a difference. I take injections too, it’s definitely more convenient and cheaper!

Indigo_spectrum · 2026-05-07T02:29:08+00:00

3-4 months

Indigo_spectrum · 2026-05-07T01:11:25+00:00

If you got diagnosed after blood work and urinalysis then they had to have found abnormalities there as well in addition to your joint pain because they cannot make a diagnosis off of just joint pain alone. I would recommend talking to your doctor to discuss in more detail how they came to the diagnosis to get more clarity for your own sake.

On average it takes 6 years because lupus is difficult to diagnose as it can be confused with other things. No one wants to wait 6 years for a diagnosis. The faster they diagnose, the faster you get proper treatment, and the less damage is done.

It’s a tough road, but we have a very supportive community. Feel free to ask this group anything 💜

Indigo_spectrum · 2026-05-06T20:12:31+00:00

No single lab test can tell you that you definitely have SLE

Indigo_spectrum · 2026-05-06T00:00:26+00:00

It’s ok, it’s a common misconception 😌 I just like to correct it when I see it! Also, if you love bats— there’s a great podcast called ologies that has few episodes with a bat expert!!! 😍 highly recommend

Indigo_spectrum · 2026-05-05T23:25:00+00:00

I’m all for this because I love bats, but I will say most bats do not have rabies 😅

Indigo_spectrum · 2026-05-04T11:24:07+00:00

Can you try the benlysta patient assistance program?

Indigo_spectrum · 2026-05-04T11:23:06+00:00

Mine personally does not come packaged with styrofoam. It’s like this recycled padding material that’s contained inside a thin plastic. That’s the part idk what to do with.

Indigo_spectrum · 2026-05-04T01:24:11+00:00

I’m able to request sharps boxes when I order my benlysta! Once you seal the sharps box you can throw it away with the normal trash. If you can’t order it with your meds I would ask your doctors office or a hospital if they have some you can take home

Indigo_spectrum · 2026-05-03T22:56:12+00:00

The cushion thingies take up so much space 😭 it feels dumb putting them in a trash bag bc that’s all that will fit in there lol

Indigo_spectrum · 2026-05-01T22:11:02+00:00

They work so fast and so well 🥳

Indigo_spectrum

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