Connect with others who understand.

sign up log in
About MyLupusTeam

Lupus

Questions + Answers

Don't see your question? ask question
Real members of MyLupusTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.
All Questions Most Answered Most Useful Needs Answers Resources:
View:

Should I Press My Doctor To Talk About And Look For Lupus?

Should I Press My Doctor To Talk About And Look For Lupus?

I am a 46 y/o female
Since 2019, I have been diagnosed with Fibromyalgia, Hashimotos, Sjogrens, and Raynauds.
I have been experiencing symptoms that concern me, because many I look up talks about RA, and most I look up talks about Lupus. An acquaintance (who has Lupus) has seen the redness on my face and discussed some of my symptoms, and she insists I have Lupus (no, she's not playing doctor, she's concerned and wants to help).

. Excessive ear wax (my rheumatologist said he had never heard… read more

A MyLupusTeam Member said:

Get a different Rheumatologist!! I was so disappointed in the Rheumatologist I had I asked my PCP for a referral to a Hemotologist that specializes in different types of blood disorders! And she is… read more

posted 4 days ago

How Do You Handle Fatigue?

How Do You Handle Fatigue?

Due to the different medications I take, fatigue is a regular part of my day. It seems as though the steroids I have been taking is doubling down on my fatigue. It has been debilitating. What do you do when the fatigue gets to that point?

A MyLupusTeam Member said:

I can't take steroids and I just use my mind to find something to take my mind off the fatigue. I rest, turn off phone, go to my quite place.

posted about 16 hours ago

Sunburn Feeling And Neuropathy All Over

Sunburn Feeling And Neuropathy All Over

I feel sunburned all over and full body neuropathy for a month now. In addition to joint, muscle inflammation and fatigue. Been on 5 mgs. Pred. And HBP med (for years) When this began. No topical allergies. Help what could this be?

A MyLupusTeam Member said:

Me too.

posted 5 days ago

I've Been Diagnosed With Tuberculosis

I've Been Diagnosed With Tuberculosis

Hi dear warriors,

I have recently been diagnosed with a latent tuberculosis. That could be very dangerous were I to start a treatment with either prednisone again or benlysta.

I have been doing some research about the issue, and strangely enough it is not rare for people with lupus who is under treatment to get TBS . I just think that this info should be more discussed. Included here in our forum. TBS can be deadly to someone under imunossupresor. So, please talk to your… read more

A MyLupusTeam Member said:

Congolia, you are not alone. We are here for you. Hugs

posted 10 days ago

Skin Burn

Skin Burn

I was wondering if anyone experienced their skin burning and feeling swollen. I have these tiny red bumps everywhere and they look like nothing but I feel like my bodys so swollen and is on fire. This has been happening every two weeks, I dont know whats going on. Its never spread past my face before but now its all over my body like wverywhere. I’ll attach pictures just in ase anyone can help, I just took two benadryl and i’ve been prescribed prednisone for tomorrow but I feel like somethings… read more

A MyLupusTeam Member said:

Yes, keep an eye on it. Lupus is not the best affliction to have. Neither is ra, and fibromyalgia. Love my lupine seesters🥰❤️😍😌☺️💕❤️🥰😍🥳🥰😍☺️

posted 1 day ago

Kidney Function

Kidney Function

Does anyone know what EfGR>59 means? My last lab work showed>60. Has there been kidney damage maybe since my last lab work?

A MyLupusTeam Member said:

Thanks everyone! I appreciate you taking the time to reply.

posted 10 days ago

How Soon After Getting Your Second Dose Of The COVID Vaccine Did You Start Doing Your Normal Things?

How Soon After Getting Your Second Dose Of The COVID Vaccine Did You Start Doing Your Normal Things?

I just got the second dose of Pfizer and was wondering how soon after did you all start doing your normal things ? I have read you are considered fully vaccinated 2 weeks after the second dose.

A MyLupusTeam Member said:

Samya YE the Cleveland Clinic team that oversees my care, said a huge NO given my medical conditions and history. They feel the same for the majority of my children whom unfortunately share my… read more

posted 4 days ago

Can Someone Explain A Lupus Flare Or A Flare In General

Can Someone Explain A Lupus Flare Or A Flare In General

So I'm still learning about lupus and to be honest i try to read online and i guess my brain ain't working i just can't understand what a flare is. Like how do I know I'm having a flare or when does it stop. Like isn't that what the medicine is for so it helps with your symptoms? Does everyone get a butterfly rash from the sun i haven't noticed i get one so does that mean i eventually will. Like sometimes i stand to do the dishes and my legs and feet feel tired is that a flare or is it just from… read more

A MyLupusTeam Member said:

Omg wow I'm sorry i know that had to take Alot of time and i so appreciate it I'm very greatful. I was able to go through my testing if your still interested in helping I'll mention them and see which… read more

posted 5 days ago

My Lupus Has Worsened So I Am Thinking About Taking Benlysta- Is Anyone Taking It And Does It Work Well? I Have More And More Fake UTIs

My Lupus Has Worsened So I Am Thinking About Taking Benlysta- Is Anyone Taking It And Does It Work Well? I Have More And More Fake UTIs

Initially I was told that it was Interstitial cystitis but from the medical journal articles I read it seems more like lupus nephritis… please let me know if you have taken this med and have had results.
Thanks!

A MyLupusTeam Member said:

Yes Hopeful I have had my covid vaccinations with no side effects.

posted 4 days ago

How Is It That My Bloodwork Is Good, But I Still Feel Bad? Am I A Hypochondriac?

How Is It That My Bloodwork Is Good, But I Still Feel Bad? Am I A Hypochondriac?

My rheumatologist said my bloodwork looks good, no damage to my organs. She told me that lupus should oul be the last thing on my mind. It made me think she must think I’m a hypochondriac. Am I?

A MyLupusTeam Member said:

Ladies, I'm 47. Was diagnosed with lupus 4 years ago. Thankfully, it's very mild. My rheumy says that it's the annoying kind. But, I still felt bad. Was gaining weight, joint pains, fatigue, brain… read more

posted 10 days ago
Continue with Facebook
Sign up with your email
Already a Member? Log in