Lupus

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1 medium

Does anyone have SLE every day instead of flares

For many years, 15, I would have a flare then I would be fine ( I always hated trying to explain why I was sick to everyone so I would just say "it's the flu" lol)
But now, for the last few years, I never get a break. I am in a continual flare. I currently take Benlysta and Immuran with prednisone when I want to travel to see my grandson.
I joined this forum in the hopes of finding others in my situation and to help me see that I am not crazy!! It has been… read more

posted about 3 hours ago
A MyLupusTeam Member said:

Oh Bobby! That is exactly where I am at! The despair is overwhelming, what is the point of waiting another month to see if the next drug will help :(
I… read more

posted 32 minutes ago
9 medium

shingles

Got shingles in/near my eye this weekend. The pain is EXCRUCIATING, they gave me lyrica and something else. I know that the lyrica is for pain and it’s not doing a thing. Does it take a long time to kick in? Also the rash on my face is hideous I’m additiom to painful, any tips on some relief? I’m 29 and can’t believe I’m dealing with this?

posted about 4 hours ago
A MyLupusTeam Member said:

Get water, baking soda, corn starch make a paste and put it on for 10 minute then rinse it will help. Oat meal grind it one the blender mix it with cold… read more

posted about 2 hours ago
2 medium

I am looking for a diet that could help prevent a Lupus flare up. Does anyone have any suggestions for me?

posted about 8 hours ago
A MyLupusTeam Member said:

No nightshades works for me. However i believe everyone is different.

posted about 5 hours ago
0 medium

Looking for tips on exercise!

Okay so thanks to 8 months of pred I gained a million pounds (really only 50) and over the last year I have lost it with good eating and yoga twice a day. Well I have realized that losing the weight helped with a lot of my symptoms so I want to lose about 20 more pounds but I am stuck with what exercises I can do. Does anyone have an good exercises that have not made their lupus symptoms go haywire?? I know we can’t do anything high impact but otherwise I am lost.

posted about 12 hours ago
A MyLupusTeam Member said:

I don’t have any suggestions, but I am interested in the responses you may get. Currently I am walking but not enough to lose any weight yet. And I… read more

posted about 11 hours ago
2 medium

Blood test

Hi, so my question is about my labs.
The only thing that came back was a positive ANA and Homogeneous Pattern was 1:160.
I’ve seen 2 DRs and they both say they can’t rule out Lupas but can’t say for sure I have it either. How do you really know if you have Lupas. What DR would truly know? Everything else was normal. Thanks! Christie

edited, originally posted about 24 hours ago
A MyLupusTeam Member said:

All my blood tests come back in “normal range” but all my symptoms show lupus. 2 rheumatologist later they know it’s auto immune & connective… read more

posted about 1 hour ago
4 medium

Moon face

Hello, I was diagnosed in June and take 10g of predison daily. Does anyone have any advice on how to decrease the moon face? I am very self conscious about it and it has made me very insecure

posted 1 day ago
A MyLupusTeam Member said:

Can you please tell me whats moon face?

posted 16 minutes ago
0 medium

Sunflower seeds good to eat for lupus or they too salty

I was watching a video and a guy says he eat sunflower seeds with his lupus and it causes him no flare I love them but I stopped eating them years ago before I had gotten lupus n I wanna eat them so bad but I’m scared it might be to salty.

posted 1 day ago
A MyLupusTeam Member said:

posted about 9 hours ago
1 medium

Anybody from England that knows a good lupus specialist !

Struggling to get diagnosed as ANA comes back negative ! Despite being ill with an endless list of horrible symptoms ! Anyone from the uk that knows of a good lupus specialist ! Willing to travel round uk to get the answers x

posted 1 day ago
A MyLupusTeam Member said:

Try to go to as many doctors as you can until you find the right one that recognizes your symptoms and is willing to work for you! Someone who cares… read more

posted about 3 hours ago
0 medium

Has anyone taken Baclofen for pain?

posted 1 day ago
A MyLupusTeam Member said:

I've taken it for muscle spasms that caused pain. It didn't do much for the pain,but it worked to help me sleep.

posted about 1 hour ago
1 medium

Trying to get diagnosed in United Kingdom !

Hi everyone, I’m new to the group ! This past year ive been in the process of getting diagnosed which seems impossible ! . I’ve had several blood tests but none have showed up as positive for lupus despite the discoid rashes, butterfly rash, sensitivity to light and the list goes on ! What are people’s experience with being diagnosed ? How long did it take ? Does it have to be a flare up for the bloods to capture it ? I’m at a loose end ! Currently just waiting to be… read more

posted 1 day ago
A MyLupusTeam Member said:

It can be a long and frustrating road. I was semi-diagnosed about 10 years ago. That doctor left and three Doctors later, finally diagnosed. Test… read more

posted 1 day ago