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Living with Lupus: Tips and Support

Started by Anonymous · · 👁 3 views · 24 replies

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Participants AJamie Clark74Scott Allen10gentlebear8Daniel LopezAlexander Wrightferalmason81Matthew Fox4Aaron Parker31Kevin Mitchell20Megan Flores7Nicole Miller66slytrucker6Michael Richardson3stormypilot52jadesailor14slyscout192Ryan Patel64
A Anonymous VeteranOP
3.6K messages
joined May 2005
#1 ·
A woman was hit by some kind of allergy—we aren't exactly sure which one, but it falls under respiratory allergens, if that's even the right way to label them. Because of that, she’s been diagnosed with asthma and the condition mentioned in the title, though we're still waiting on definitive answers there... She’s already on a treatment plan for both the allergies and the asthma. BUT, now that we've been digging through some medical encyclopedias, we're wondering: is there any way to lessen or manage the impact of this lupus? We were told there isn't a cure yet...
Jamie Clark74 Jamie Clark74 Regular
278 messages
joined Sep 2004
#2 ·
tratinčica31 said:A woman suffered an allergic reaction—not sure which one exactly, but it falls under respiratory allergens. Because of that, she was diagnosed with asthma and the condition mentioned in our title, though that part is still being investigated. She’s already on therapy for both the allergy and the asthma. However, we've been browsing some medical resources and want to know if there's any way to lessen or manage the effects of this lupus, since we were told there isn't a cure yet...

I’ve included the simplest and most helpful link here, and it's in English. This is a complex disease that people often ask about or try to understand because it's so multifaceted. The article includes further links regarding research, different types, and potential triggers. Interestingly, certain medications can actually trigger this condition; there are about 40 drugs on a list that
could cause these issues.

http://en.wikipedia.org/wiki/Lupus_erythematosus

Best of luck.
🙂 😉 😎
Scott Allen10 Scott Allen10 Regular
315 messages
joined Jun 2005
#3 ·
First off, we really need to clear up that questionnaire you mentioned. You can't exactly start treating something until you actually know what you're dealing with. Since I feel like people love tossing around "lupus" like it’s some kind of trendy label without any proof, I wouldn't be surprised if this whole thing turns out to be a total false alarm.
Jamie Clark74 Jamie Clark74 Regular
278 messages
joined Sep 2004
#4 ·
Scott Allen10 said:First off, we really need to clarify the question you're asking. You can't start treating something until it's actually confirmed. Since some people love throwing around "lupus" as a catch-all diagnosis without proof, I wouldn't be surprised if this all turns out to be something else entirely.

Exactly... when there isn't another clear answer but the symptoms happen to line up with what we're talking about, doctors often just label it as "Lupus." That's my point.😉
Scott Allen10 Scott Allen10 Regular
315 messages
joined Jun 2005
#5 ·
Jamie Clark74 said:That’s exactly it... when you don't have any other diagnosis on the table but there's a whole bunch of symptoms that line up with the one mentioned above, doctors end up slapping an "SLE" label on everything, which is basically what I was getting at earlier.😉

👍
gentlebear8 gentlebear8 Member
17 messages
joined Jan 2007
#6 ·
tratinčica31 said:A woman was hit by some kind of allergy—not sure exactly which one, but it falls under respiratory allergens. Because of that, she’s been diagnosed with asthma and the chronic illness mentioned in the title, though that part is still being questioned... She’s already on therapy for both the allergy and the asthma. BUT, now we’re looking through medical encyclopedias wondering: how can you actually lessen or suppress the effects of this lupus? We were told there isn't a cure yet...

...I doubt any doctor would even mention lupus, let alone diagnose it, without very obvious symptoms appearing first. It's a systemic autoimmune disease—extremely progressive and incredibly destructive. You have to take it very seriously.
Daniel Lopez Daniel Lopez Active Member
187 messages
joined Sep 2003
#7 ·
Are you noticing any red patches on your face, maybe some circular spots or even something shaped like a butterfly?
Alexander Wright Alexander Wright Newcomer
4 messages
joined Apr 2009
#8 ·
Essentially, you aren't looking for a cure—you're looking for management.

The standard toolkit mostly consists of anti-inflammatories—think corticosteroid creams for milder skin rashes combined with NSAIDs to handle the joint and muscle pain. Now, if things get a bit more serious, doctors usually pivot toward corticosteroids or immunomodulators/cytostatics (things like azathioprine, cyclosporine, or sulfasalazine). But, and this is a big "but," those come with a laundry list of side effects, so a physician really has to be careful about how they prescribe them.

As far as the diagnostic side goes, a primary care physician can't just call it based on a butterfly rash and some arthritis alone—not without seeing positive lupus markers in the bloodwork, such as ANA or LE cells. That said, if the clinical presentation is textbook, there’s probably a 90% chance they’ll nail the diagnosis regardless.
A Anonymous VeteranOP
3.6K messages
joined May 2005
#9 ·
Basically, she went to the doctor because of the rash, and they just diagnosed it as an allergy to "something." They were giving her Solu-Medrol injections, which helped for a little while, but the effect started wearing off. The skin reactions caused by this "something" kept getting more frequent and much uglier until she ended up hospitalized at the Mayo Clinic right before New Year's Day. The doctors back in Indianapolis had been dragging their feet and sending her home like it was nothing, but once she was admitted in Columbus, things finally turned around. She’s back home now and doing pretty well, though she still gets occasional flare-ups on her arms or hips.
Can I send over some photos? I took some during one of those bad rashes so you can actually see what we're dealing with.
Jamie Clark74 Jamie Clark74 Regular
278 messages
joined Sep 2004
#10 ·
Send me a photo via DM, and I'll get it uploaded under your name through my system.
😎
Jamie Clark74 Jamie Clark74 Regular
278 messages
joined Sep 2004
#11 ·
tratinčica31 said:Basically, she went to the doctor because of the rash. They diagnosed her with an allergy to "something" and gave her Solu-Medrol injections. It worked for a little while, but the effect kept wearing off. The reactions to whatever was causing the redness on her body just got more frequent and nasty until she ended up at the Mayo Clinic right before New Year's Day. The doctors in Indianapolis had been stalling and sending her home like it was nothing, but things finally improved after she was hospitalized in Columbus. She’s back home now and doing alright, though she still gets occasional breakouts on her arms or hips.
Is there any way I can upload photos? I took some during one of those flare-ups—maybe that would help show what we're dealing with.


tratinčica31 uploading photo:

http://au.geocities.com/vilimkov/For...tratincica.jpg
feralmason81 feralmason81 Newcomer
2 messages
joined Feb 2008
#12 ·
So, my mom was diagnosed with systemic lupus erythematosus a few years back. It all started when she noticed this rash on her face and decided to go see a dermatologist. They put her on Resochin. Now, once she got the diagnosis and started the treatment, that facial rash actually cleared up, which was good, I guess... but since then, she’s just been so much more exhausted. She feels this constant weakness throughout her entire body, and her joints have been giving her a lot of trouble—especially her hands.

The thing is, the dermatologist hasn't really suggested seeing a specialist for anything else, or even looking into physical therapy.

If any of you have dealt with SLE directly, or maybe even indirectly through someone you know, could you please let me know if this is really all there is to do? Or... I don't know, maybe her doctor is missing something important here?

thanks
Matthew Fox4 Matthew Fox4 Member
42 messages
joined Oct 2011
#13 ·
Right now, there's this huge thread on the other page all about systemic lupus erythematosus.

So, if I were you, I'd just copy and paste your question over there. You'll definitely get way more responses and some solid advice to help your mom out.
feralmason81 feralmason81 Newcomer
2 messages
joined Feb 2008
#14 ·
Thanks. I'm moving this post over there.
Aaron Parker31 Aaron Parker31 Newcomer
1 message
joined Jun 2007
#15 ·
I've been living with SLE for ten years now. For a while, I was on a combination of corticosteroids and Imuran, but once my doctors switched me to just Imuran, things really started looking up. About two years ago, my doctor decided to take me off Imuran entirely. Since then, my lab results have just kept trending downward. I’ve also been dealing with a loss of appetite and some inflammation in my esophagus. I'm currently running every test imaginable to figure out what's going on... Do you think I might need to get back on Imuran?
Kevin Mitchell20 Kevin Mitchell20 Member
36 messages
joined Sep 2007
#16 ·
Lisa Thomas23, you're looking at the wrong PDF 🙂
get well soon
as a modern-day witch😁, my best advice is to just strengthen your organs naturally; green algae, spirulina, echinacea... a balanced diet, herbal teas...
Megan Flores7 Megan Flores7 Newcomer
1 message
joined Mar 2008
#17 ·
Lisa Thomas23 said:I've been dealing with systemic lupus erythematosus for ten years now. I was on corticosteroids and Imuran for a while, then just Imuran, which really helped me feel better. About two years ago, my doctor decided to take me off the Imuran. Since then, my lab results have steadily declined, my appetite is gone, and I'm struggling with esophageal inflammation. I'm undergoing all sorts of tests right now... Is it possible I should be back on Imuran?

I know a girl about 17 years old
who lives in America right now, though her family is originally from Canada
and she had ER lupus that started affecting her kidneys and other organs
and
heleneis
completely recovered using entirely natural methods through an alternative medicine practitioner
Dr. Srabović from Gračanica. She was actually referred to him by someone else who had also been cured there
so it might be worth looking into if you can afford it
just a few treatments and she was healthy again
Matthew Fox4 Matthew Fox4 Member
42 messages
joined Oct 2011
#18 ·
Welcome to Health, though I really wish we were all here because of a common cold instead of everything else. But hey, glad you made it!

Anyway, if you scroll down just a bit on this page, you'll find the systemic lupus erythematosus thread. We actually have a pretty big group over there dealing with that, so it’d be awesome if you could head over to that discussion instead of us starting a whole separate thread here.

Megan Flores7, would you mind posting Dr. Srabović's contact info over in that SLE thread?

Sending my best to everyone, especially the linguists, 🤔)
Nicole Miller66 Nicole Miller66 Newcomer
1 message
joined Apr 2008
#19 ·
Checking in from Chicago. I was diagnosed with SLE 13 years ago and I'm 36 now. I had a son four years ago and I’m looking to have another baby. My doctor is a little hesitant, though. Right now my lupus is in remission. My labs look good—they always seem to be—and there's no organ involvement, just some mild skin issues that flare up a bit during the summer.
I handled my first pregnancy great. I actually went off all my meds on my own, thank God, and everything went smoothly. I started my therapy again right after giving birth and stayed on track.
I've been on the same regimen for a while: Pronison between 5 and 10 mg and Delagil, one of each daily. It's similar to Resochin. I stay out of the sun and follow all the usual rules...
I'm really glad I found this forum so I can share my experience with everyone living with lupus...
We can all fight this together and win...
🙂🙂🙂
slytrucker6 slytrucker6 Newcomer
1 message
joined Apr 2008
#20 ·
Dear Cucan,
There’s actually already a massive thread over in the health section—about 50 pages of people discussing systemic lupus—so you might want to jump in there. You'll just have to dig through the archives a bit to find it.

Best regards!🙂

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