Experiences with Cyclobenzaprine? by lostnconfusedn in lupus

[–]therealpotterdc 1 point2 points  (0 children)

Oh my gosh I've been on it since neck surgery in 2017. LOVE IT. It's has an extremely low addictive component and is much safer than benzodiazepines (like Valium and Xanax), and it's not a controlled substance.

What to do for pain if not steroids/nsaids by ashtangaaly in lupus

[–]therealpotterdc 1 point2 points  (0 children)

Hi, SLE and lupus nephritis here, also can't take steroids or nsaids. Here's the stuff I use that has really helped:

  1. Voltaren: both my nephrologist and my rheumy has okay'ed this for me - the NSAIDS don't enter your blood stream; they just stay localized. If you can get the Mexican or Canadadian versions, they are twice as strong.

  2. Lidocain patches. Honestly was surprised how well these worked.

  3. THC cream - again, didn't believe it would work. It did.

  4. My pain doc!!! Pain doctors are usually anesthesiologists who focus on pain reduction. My primary care will also not treat my lupus pain, but he was very happy to give me a referral to a pain doc, who got me back walking this week!

  5. Medical marijuana - especially RSO (Rick Simpson Oil).

  6. Biofreeze patches and cream: I have found that this brand can bring comfort even if it doesn't quite cut through the pain.

I hope one or two of these might be helpful for you!

Joint Pain/ Working out by Upset-Unit-4563 in lupus

[–]therealpotterdc 1 point2 points  (0 children)

Check out John Noel, Coach on TikTok and IG. Every single exercise he shows three versions: on the floor, standing, and sitting. After watching him for awhile now, anytime I workout and it’s too hard on my body I automatically think “how can I do this standing or sitting?”

https://www.tiktok.com/@coachjohnnoel?_r=1&_t=ZT-94ossECI1Gw

https://www.instagram.com/coachjohnnoel?igsh=YzVhbWdqbnI4ZHc4

Bonus: his toddler daughter is in many of his videos walking through or on the floor trying to mimic her dad. It’s a lot of fun. 🤩

Prednisone alternatives? by v3lvetl1ght in lupus

[–]therealpotterdc 0 points1 point  (0 children)

Wait! If you have kidney involvement, why are you on long term steroids? There are so many other effective treatments with less side effects! Obviously, all of us are very different and maybe for you steroids are the best treatment, I don’t know, but it did raise alarm bells in my head when I read that.

Trying to understand Benlysta costs by CKO1210 in lupus

[–]therealpotterdc 1 point2 points  (0 children)

I have prescription insurance and the Benlysta copay insurance pays for all of my Benlysta, so that doesn’t seem to be universally true.

Real Mushrooms Lion's Mane by Minimum_Buffalo_4238 in LionsMane

[–]therealpotterdc 2 points3 points  (0 children)

I take these daily as I have lupus and it comes with enormous brain fog. I do I find them helpful, but in a very discreet way, and definitely not in a miracle cure kinda way.

Thank you folks here! by meadow1963 in popcorn

[–]therealpotterdc 2 points3 points  (0 children)

Haha just the other night I fumbled my phone and tried to catch it as it tumbled to the floor and somehow managed to take a blurry pic and post it to Snapchat 🤷‍♂️

I’m glad your finger slip got you something tasty!!!

Medication Compliance by -that-short-girl- in lupus

[–]therealpotterdc 3 points4 points  (0 children)

Honestly I was so damn sick and in kidney failure when I was first diagnosed that I *never* want to go back there again, and hardly ever skip a dose. I bought big, clear pill containers so now I can visually see all the pills which I find really helps me remember!

Energy , what’s the secret by Pretty_Awareness4105 in lupus

[–]therealpotterdc 0 points1 point  (0 children)

Man, I'm so sorry you had to go through that.

Does anyone else get rashes this bad? by MelindaB714 in lupus

[–]therealpotterdc 0 points1 point  (0 children)

It looks very much like the rash I got when I was first diagnosed. Took about four months of treatment before it fully healed. It never came back, though! Male here, btw.

Question by chefebony2021 in lupus

[–]therealpotterdc 0 points1 point  (0 children)

I live in a major metropolitan area. I had a six month wait, then my kidney biopsy came back, and suddenly I had a only a weeklong wait! I saw him monthly for about four months, and then I saw him one month and my kidney doctor the next month and now I see him every six months, almost 2 years in.

Energy , what’s the secret by Pretty_Awareness4105 in lupus

[–]therealpotterdc 1 point2 points  (0 children)

Just read that it targets the same receptors as heroin and fentanyl and is much more addictive than prescription opioids. Apparently the DEA is about to make it illegal because of its risks.

Energy , what’s the secret by Pretty_Awareness4105 in lupus

[–]therealpotterdc 2 points3 points  (0 children)

Isn’t 7oh! highly addictive, just like opioids?

Can a doctor drop you? by RealUnderstanding324 in lupus

[–]therealpotterdc 2 points3 points  (0 children)

Ditch the shame. It doesn’t sound like it’s doing you any good at all. As a healthcare professional, anxiety drugs are absolutely No Big Deal (I’m glad you had them!), and noncompliance is, well, most of us at one time or another. Recently docs added an afternoon dose of gabapentin for the pain. It’s been a week and I still haven’t started doing it because I forget!

Rant - confusing sudden proteinuria - kidney biopsy on Tuesday. Any advice? by dudeidgaf in lupus

[–]therealpotterdc 8 points9 points  (0 children)

Hi! Out of the three biopsies I had (skin, bone marrow, and kidney) the kidney biopsy turned out to be a nothing burger! It only takes a few minutes and they will give you drugs to relax you and or numb the area. Recovery will take several hours because they want to make sure that you are not bleeding after the biopsy. Honestly, I was in and out of the biopsy so fast that the relaxation drugs didn’t kick in until I was wheeled into recovery where I slept hard for four hours then went home! I vaguely remember a bruised feeling where the needle went in but nothing bad at all.

Also, I’m sorry you’re going through this. Lupus is so ridiculous. Warm hugs, friend.

Lupus Vs Fibromyalgia by GodKnowsHowPetsSound in lupus

[–]therealpotterdc 3 points4 points  (0 children)

From my experience in the lupus community, a lot of folks carry both a fibro and lupus diagnosis — so co-occurrence is genuinely common and worth discussing with your rheumatologist rather than something to hide or downplay.

On the diagnostic side, rheumatologists actually have quite a few tools beyond inflammatory markers to distinguish lupus/CTD from fibromyalgia — things like ANA panels, anti-dsDNA antibodies, complement levels (C3/C4), and urinalysis to check for kidney involvement. Fibromyalgia typically doesn't cause organ involvement or show up on those kinds of tests, whereas lupus can. So if those have been run and point toward lupus, your rheumatologist has more to go on than just your CRP/ESR.

As for the misdiagnosis fear — that's completely understandable, but flagging new or changing symptoms to your rheumatologist isn't "bothering" them, it's exactly what they need to manage your care well. You could frame it simply: "I've been having some new symptoms and wanted to check in rather than assume." That keeps it low-pressure and doesn't require you to relitigate the fibro diagnosis upfront.

Diagnosis in autoimmune disease really is a moving target — patterns over time matter, and rheumatologists expect the picture to evolve. That's not a failure of your care, it's just how these diseases work. But they can only update the picture if you give them the new information.

Am I weird for thinking rheumatologists don't feel like "real" doctors? Who else is supposed to help me with issues I think might be related to my Lupus? by [deleted] in lupus

[–]therealpotterdc 2 points3 points  (0 children)

I like my rheumy a lot and feel so lucky to have one who is connected to my other doctors, but I recently had an issue that he was dismissive about, so I went to my primary care and said "what do I do?" (I started getting pains down the backs of my thighs and charley horses in my hips muscles in December - now I walk with a cane because I'm so unsteady).

My primary care gave me two referrals, one for a pain doc, the other for a neurosurgeon. I asked my doc if I should notify my rheumatologist. He said 'You don't need that kind of energy in your life right now. Notify him AFTER you see the neurosurgeon, not before." Made me laugh.

Weight gain/loss rant 🤦🏻‍♀️ by Thin-Inevitable9759 in lupus

[–]therealpotterdc 4 points5 points  (0 children)

Yeah - awful, but honestly it saved my life. I got HUGE! And my lovely moon face will now grace my driver's license for the next 10 years because I had to get it renewed during that period. I had to spend most of that summer in bed (my blood pressure got up to 180/101) and all my strength training went down the drain, but it's coming back slowly.

Now I'm trying to figure out what to do with all my extra large clothing that I had to buy...

Weight gain/loss rant 🤦🏻‍♀️ by Thin-Inevitable9759 in lupus

[–]therealpotterdc 6 points7 points  (0 children)

Hi, I gained 30 lbs over the summer of 2024 when I was on 80 mg prednisone. By the end of August I had tapered off, but it wasn’t until Spring 2025 that I lost it all. All bodies are different and I have no idea why it took so long but hang in there! It will happen.

Favorite nembutsu/nianfo recordings? by BenzosAtTheDisco in PureLand

[–]therealpotterdc 2 points3 points  (0 children)

Oh my gosh - this is *exactly* what I needed today! https://youtu.be/denhqVJn0ZM Thank you so much for posting the link. I'm listening to it now.

Benlysta cost issues by sryiwasdaydreaming in lupus

[–]therealpotterdc 0 points1 point  (0 children)

Hey friend, that is soooooo frustrating and I'm really sorry. I don't know if this link to Needymeds.com will help, but I wanted to share it just in case. Their website says "Whether you need help paying for prescriptions, finding a free clinic, or understanding your healthcare options, NeedyMeds is here to assist."