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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.
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Alloydonia

Alloydonia

Is this part of Fibro. My nerve endings are on fire and skin sensitive to touch. How is this treated and what helps. It has been bothering me but getting worse. I asked my PCP if it’s alloydonia what causes it, he was no help but I find him clueless anyway.

A MyLupusTeam Member said:

My rheumatologist is sending me to Neuro due to neuropathy legs, feet,and I think hands too. I have both fibro and lupus

posted about 3 hours ago

Does Anyone Have Trouble With Ears And/or Nose?

Does Anyone Have Trouble With Ears And/or Nose?

My ears have been bothering quite a bit lately - popping, feeling blocked, sometimes other weirdness. Just had them checked by primary & she cleared them. Also my sense of smell seems to be decreasing. It’s been poor on & off for years but just wondering if either or both are lupus related.

A MyLupusTeam Member said:

Yes. I have been having a great deal of problems. I ended up in the hospital. Because the room was completely spinning. I couldn't lift my head or even stand or walk
And the throwing… read more

posted about 1 hour ago

What Do You Know About Saphnelo

What Do You Know About Saphnelo

I've been reading about a new lupus drug, Saphnelo (anifrolumab-fina). I was wondering if anyone else heard or has tried it. I believe it is an infusion and is specifically for lupus.
Sounds promising!

A MyLupusTeam Member said:

I am also getting ready to start benystla I’m just upset that I have not known about the drug till now

posted 1 day ago

Actemra

Actemra

Good afternoon I am having a blessed day.
Has anyone been on Actemra? Any feed back would be greatly appreciated. Everyone have a good day.

A MyLupusTeam Member said:

Thank you

posted 4 days ago

Bizarre Bruising With No Apparent Cause

Bizarre Bruising With No Apparent Cause

Can any of you wonderful folks give me any insight on this bruise please??? It showed up out of nowhere late Friday night. Here's more to me being a medical mystery. All these fucking weird ass symptoms show up and none of these half ass "educated" Dr's can give me an explanation without giving me lame excuses. Please excuse my language but I am at my witts end with all this fucking shit. I cannot take anymore.

A MyLupusTeam Member said:

It's hard. But we are here for the support. And yes bruises and rashes.

posted about 1 hour ago

Vaccine During Flare Up

Vaccine During Flare Up

Hello, to all who took the vaccine. Did you wait until the Lupus flare up is over/a bit better and got the vaccine or did you received the jab while having a flare up? If yes, did you feel worse afterwards? Thanks

A MyLupusTeam Member said:

Thank you Catmcdonald ☺️

posted 1 day ago

Maybe I Should Find A Better Doctor

Maybe I Should Find A Better Doctor

Hi My Warriors, Since I was hospitalized 3/3/20 with 3 bloodclots. Lung, leg and jugular I have had several issues. I was hospitalized 2 mos ago for a T.I.A. Now I have this cough that has been going on for about one month. I do suffer from acid reflux and my gastro put me on meds, it had gotten better. But this cough comes with shortness of breath, and choking. My pulmonary doc put me on prednisone and pantoprazole. I can hardly eat cause my food feels like it's stuck in my throat. And I have… read more

A MyLupusTeam Member said:

I'm also going to have a capillaroscopy done.

posted about 2 hours ago

Night Sweats & Cold Sores

Night Sweats & Cold Sores

I get random night sweats. But the last two times now I wake up with cold sores also. It’s like the night sweats are getting worse. Did yours get worse? I know it’s a sign going into a flair. I’m guessing I must run a fever with them. Which is causing my cold sores to pop up. Does anyone else get cold sores after? I hate waking up soaking wet. I’m definitely looking into getting a colder mattress.

A MyLupusTeam Member said:

I agree, I sweat day and night, throughout. Now I am experiencing my hands and feet get very cold randomly and my hands turns really red inside palm.

edited, originally posted about 8 hours ago
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