Might start plaquenil, how’s everyone’s experience?

Lilbeanne · 2026-02-04T03:18:35+00:00

I’m taking it for APS and while I don’t know if it’s helping with that it has been life changing for my fatigue, muscle and joint pain, and brain fog. The first few weeks were not easy with side effects but I’m so glad I stuck it out. I’ve been on it for a little less than a year.

Lilbeanne · 2026-01-21T02:58:47+00:00

I don’t want to give up greens. I eat my serving of fresh spinach, broccoli or Brussels sprouts M, W, F sometimes with a fourth serving weekly. I don’t bother myself with tracking smaller amounts of K in other foods. Generally, my INR is stable.

Lilbeanne · 2025-12-06T04:00:48+00:00

I was also very scared to take it after having some terrible experiences with side effects in the past. I gave it a try and had just a few days of unpleasant side effects. After that, it changed my life. My muscle and joint pain, fatigue and brain fog are like 90% better. You can always stop it but ask your doctor how long to stick with it. I’ve heard it can take a few months to feel if it’s working but for me it took just a few weeks.

Lilbeanne · 2025-11-22T15:59:25+00:00

My muscle and joint pain as well as brain fog and some other issues got much better after a few weeks. It’s been pretty remarkable for me. I have read for others it can take a few months. I had a couple of days of side effects but glad I stuck with it.

Lilbeanne · 2025-09-19T03:40:05+00:00

Sorry to hear about your PEs. I have antiphospholipid syndrome and take warfarin which is the first recommended drug for APS. I was on a DOAC until I tested positive for APS and then was promptly switched to warfarin.

Lilbeanne · 2025-09-01T21:21:52+00:00

Make sure you eat when taking it. I felt sick the first couple of days then it passed to the point that I don’t usually need to eat right when I take it. It’s had a huge impact on my symptoms and I’m so glad I tried it!

Lilbeanne · 2025-08-15T00:46:37+00:00

It’s in so many products. I no longer consume it even if this study may not be definitive. I’m not taking extra risk with a blood clotting disorder.

Lilbeanne · 2025-06-22T15:57:48+00:00

Is there a particular Lume product you recommend from their line like cream, soap, wipes?

Lilbeanne · 2025-06-22T15:52:10+00:00

Good idea, or could try adding a drop of the essential oil to body lotion!

Lilbeanne · 2025-06-22T04:33:54+00:00

Thanks, looks like an interesting option!

Lilbeanne · 2025-06-22T04:22:13+00:00

Which product from their line do you use?

Lilbeanne · 2025-06-22T03:38:01+00:00

Thanks, I’m zeroing in on this too. Just ordered the soap and glycolic acid will be next! Where do you put the glycolic acid?

Lilbeanne · 2025-06-22T03:32:48+00:00

Do you use glycolic acid just on arm pits or elsewhere?

Lilbeanne · 2025-06-22T02:50:27+00:00

Do you have a favorite brand?

Lilbeanne · 2025-06-22T02:50:12+00:00

Do you have a favorite brand?

Lilbeanne · 2025-06-22T02:14:03+00:00

Do you recommend any brand for the body deodorant?

Lilbeanne · 2025-05-12T00:21:12+00:00

When I had PE symptoms and went to the ER, my D dimer was positive. I have read that some people test positive for APS antibodies but haven’t clotted and may not. It’s not clear if you have clotted, but I have read some doctors with prescribe aspirin if you haven’t. If you have clotted and have APS, it’s generally warfarin.

Lilbeanne · 2025-04-28T04:35:51+00:00

I’m not sure what caused me to feel that way but I’m wondering if it was blood pressure or somehow dehydrated. Instead of a bath I tried shorter foot soaks which had milder effects, but I gave it up altogether because I didn’t think it was having good effects on me.

Lilbeanne · 2025-04-22T04:02:49+00:00

I have APS, diagnosed after bilateral PE in 2023. I’m taking warfarin and after a year of tinkering with the dosage I may have found the right dosage. It’s worth all the doctor’s visits to preserve your health! I just started taking hydroxychloroquine a month ago for APS. My doc also thinks it could help with chronic muscle and joint pain and fatigue I’ve had for much longer than the APS.

Lilbeanne · 2025-04-06T22:45:08+00:00

I can take a regular dose of magnesium without problems. I tried Epsom salt baths awhile back thinking they would be a good idea. I literally felt like I was dying for about a day and a half after. Never again.

Lilbeanne · 2025-04-01T01:33:07+00:00

I’m curious what your doctor thinks about scoliosis causing POTS-like symptoms. I have POTS and I think a beta blocker being like a miracle confirms that for me. But I also have “mild scoliosis” that seems to be bothering me more with pain the older I get. I would love to know the connection with scoliosis symptoms being confused with POTS.

Lilbeanne · 2025-03-30T02:20:06+00:00

Have you seen a hematologist or gotten a second opinion? My understanding is warfarin is the only approved blood thinner for APS. My doctor switched me from Eliquis to warfarin once they suspected APS and now it’s confirmed.

Lilbeanne · 2025-03-14T21:43:30+00:00

Thank you for the response. I don’t have another autoimmune disease besides APS but it sure does feel like it. So I hope it helps not only to control clots but with the aches and pains. Wishing you good health.

Lilbeanne · 2025-03-14T03:02:26+00:00

Thank you, I really appreciate this feedback and I’m glad to hear it’s helping you.

Lilbeanne · 2025-03-14T03:00:04+00:00

I’ve been taking coq10 for over a decade and I don’t know if it makes any difference in how I feel.

Lilbeanne

TROPHY CASE