Posts by Ryan Patel64

urbanorca said:Ryan Patel64, sorry, it’s me again. I know, I know—I’m probably driving everyone crazy by now.

But this whole online thing is really bugging me. You see these massive, household-name pharmacies in the US and the UK selling this stuff, but they strictly require a prescription because, you know, they actually want to follow the law. Take Skips Pharmacy in Boca Raton, Florida, for example—one of the big names. Someone living in Los Angeles isn't exactly going to hop on a plane to Florida just to pick up a bottle of meds. No, they send over the prescription first, and then everything gets handled online.

Then you've got the situation with India. They ship without a prescription, and since it’s way cheaper—according to what people are saying on the LDN forums—lots of folks from the US, the UK, and elsewhere end up ordering from one of those massive Indian generic pharma giants. It's even gotten to the point where some Western pharmacies buy bulk supplies from India (like 50 grams at a time), then dilute it themselves to make specific 3mg or 4.5mg capsules.

Look, obviously, the gold standard is getting treatment with proper medical advice and doctor support.

Just one question for the group: did your doctor actually give you any real info regarding Naltrexone or LDN? Because let’s be honest, there is a massive difference between the two.

My doctor gave me the rundown on LDN (Low Dose Naltrexone), and yeah, I get it—it's basically just a super diluted version of Naltrexone. But honestly, who can actually guarantee you're getting those exact micro-doses? To quote my doctor directly: "Absolutely not. This isn't a treatment for lupus, and I refuse to write a prescription for it because I'm responsible for my patients' care." I hope I'm being clear this time. Please, stop questioning me, and please don't use my name to try and sell or promote these online suppliers. I don't want any part of that. Sorry, but I just don't have the energy to keep repeating myself. I'm dealing with enough health issues as it is, and arguing about this just stresses me out—which is the last thing I need, since stress is strictly off-limits for my condition. I can't risk making things worse.
With all due respect, I hope that answers everything. I'm done discussing this with you since we clearly see things differently.

Even if it's a different medication being sold online, no matter how "proven" people claim it is, I wouldn't touch it.
Best,

urbanorca said:Ryan Patel64, I totally get where you're coming from. Sending nothing but good vibes for your health.

Look, sorry if I can't go all out here, but I don't trust doctors 100%. Not after what I went through. A few years back, they put me on this famous statin, and man, it caused me nothing but trouble. Then, wouldn't you know it? I find out later the drug was actually banned because it was linked to over a hundred thousand deaths.

Thanks for the well wishes. Look, I've definitely dealt with medical mistakes too—doctors aren't perfect, and they mess up sometimes. But at the end of the day, I’d still rather trust them than go buying random stuff online. You know how it is—someone claims a product is a "cure" for lupus, but it hasn't even been vetted by the FDA or any actual authorities. Why risk it?

Once again, thanks for the kind thoughts about my health.

urbanorca said:Ryan Patel64, thanks for the helpful input on LDN.

Look, obviously you need to talk to a doctor, especially when dealing with something as heavy as lupus. But let's be real—most doctors here in the States don't know the first thing about LDN or how it treats autoimmune issues. Your doctor probably gave you the runaround regarding Naltrexone instead of explaining LDN. It’s obvious Naltrexone isn't the answer for autoimmune stuff; the standard dose is 50mg, while LDN usually tops out at around 4.5mg. They aren't even the same game.

If you've got the energy, try searching "LDN lupus" on Google. There is a ton of info out there in English (you can always use Google Translate if you need to). Plenty of patients swear by it and claim it changed everything for them.

There are actually doctors in the UK and the US who prescribe LDN specifically for lupus.

As for the cost here in the US, that price you saw is definitely for the 50mg tablets, which you have to dilute down to 4.5mg or less. If you go that route, 28 tablets could actually last you a year or more. One American woman—I think she's from Norway—takes LDN for MS and was posting on page 71 of the MS section about how to dilute Naltrexone. From what I gathered, she wants to join public discussions, but she might just hit you up via PM. Otherwise, you can get it from a reputable pharma company in India for about $19 for 10 tablets (50mg), and a good number of people in the West buy it that way.

I still believe in LDN because it has helped so many people. Just be careful, though—don't go rogue and start dosing yourself without supervision. Wishing you nothing but the best with your health. Thanks again.

Thanks for trying to convince me, but honestly, whether we're talking about LDN or Naltrexone, I'm just not interested. I'm not taking it. To be fair, I didn't even bother asking my doctors here in the States—I actually reached out to specialists in Denmark instead. But look, does it even matter? Everywhere in the world, Lupus is treated with corticosteroids or Imural, or some other drug from that cytostatic group. Most people end up on Imural, but I’m not going to play philosopher here. The bottom line is I have zero intention of using that stuff, let alone diluting it. Thanks FOREVER!
That’s just my two cents on the whole lupus situation. If someone else wants to go a different route? Hey, go for it! At the end of the day, everyone has the right to call their own shots and live their life exactly how they see fit.
Look, I wasn't trying to start some big debate or jump into anyone's business. Honestly? I just wanted to open everyone's eyes after my talk with the doctor and share exactly what was said to me.
Everything was honestly coming from a good place. Look, when you're the one living with the illness, you know exactly what's at stake when you take the wrong thing. You get it. But at the same time, don't we all just want to believe anything if it means finally feeling better? It's so easy to get swept up in that hope, right?

Angela Wright said:Ryan Patel64,
The doctor’s response is completely predictable. From both a legal and medical standpoint, they have zero authority to prescribe a medication for an indication where there aren't enough large-scale studies to justify a new approved use for a different disease.
I’ve already spent pages here venting about this exact issue.

Thanks, Angela Wright. I realize now you were just trying to help and wanted to open my eyes, just like I did. I guess I might have believed it at first too—secretly hoping it would work, even if I was being cautious until I could talk to my rheumatologist. He's the one I actually trust with my life.

wirednomad42 said:Can you just scan that thing and post it here so we can actually see it? 🙂

Man, I feel bad, but this is all in Danish. Plus, I’m pretty tech-illiterate—all I really know how to do is write a post or a message.

I think you could probably check it yourself if you just search for LDN and set the language to Danish.

Honestly, after talking to my doctor and having him flat-out tell me NOT to use anything for lupus, I don't even want to think about asking about meds sold online anymore. It's just not worth the headache.
Look, it's totally fine that you're trying to help someone out by sharing what you've heard works or where to find it from a specific pharma company—hey, if people want to look, let them.

Maybe I'm wrong, but that's just how I am.

So, I was talking to my
rheumatologist today about how much LDN might actually help with my Lupus. After he did his little "research" on the drug, his answer was a hard NO. Not even close. He told me straight up that this stuff is strictly for addicts going through withdrawal from alcohol or drugs. I kept pushing, telling him I’d read all about how low doses can be used for Lupus and MS, but he just printed out the standard info on the medication. Nowhere in his papers did it mention anything about tiny doses being effective for Lupus or any of those other conditions where people claim small amounts work wonders. He made it very clear: he refuses to prescribe it because he’s responsible for my care. Honestly, I felt so embarrassed afterward for even bringing it up—like I was trying to play doctor with my own physician. Like melloworca6 said, please don't try anything before checking with your doctor. Our conditions are so sensitive, and one tiny mistake could trigger a massive flare-up, let alone taking unverified meds on your own whim.
After getting totally shut down by my doctor today over this med, I wouldn't even suggest consulting a physician about it. The guy I spoke to was actually reasonable, and he could have easily dropped me as a patient just because I fell for some online hype. And let's be real, this stuff isn't cheap here—a single pack of 28 tablets runs you well over $110.
For heaven's sake, everyone, let's get real here. This isn't like buying socks online; we're talking about medication that can seriously jeopardize a patient's health unless we're talking about detoxing addicts. Plus, that official brochure he handed me didn't say a single word about the side effects being as minimal as people claim on the internet.
I'm not trying to patronize anyone or be rude, I just want to open everyone's eyes. We all grab at straws hoping for a miracle, but we have to be careful.

So, I ended up drifting over to this thread because my fever is acting up again, dragging me right back to square one with my own health issues. It doesn't necessarily mean the same thing is happening to Zabica 22, though. I’m totally with you guys on getting tests done early, and I agree with femmalatin—there’s zero reason to panic. Panicking helps nobody; you just have to stay level-headed. Honestly, all this bickering in the comments feels pretty misplaced. My take on any illness? Get to a doctor immediately, get your bloodwork done, and make sure you get an Asta test. I don't want to freak out Zabica 22 by listing everything I deal with, but it all started when doctors couldn't figure out why I had a constant 99.5°F fever. They let me struggle with that for an entire year before they finally gave me my first diagnosis. And just to be clear, I'm not being a pessimist. Even though I have seven different diagnoses on my chart now, most of them were caused by that very first issue they missed.

Hey everyone! Sending good vibes to the whole forum. Zabica 22, I really hope you get that fever sorted out soon. And hey, it is completely normal to feel exhausted if you've been fighting a low-grade fever for this long. I’ve learned a lot through my own medical journey over the last 22 years since my first diagnosis. Trust me, that 99.5°F can actually be way harder to deal with than a 102°F fever. You know, with a high fever you can at least try to bring it down, but with this kind of thing, you feel stuck.

Sorry for the long rant! Just wanted to share my perspective. I'm not trying to act like a know-it-all.

Hey everyone! Just wanted to drop in and let you know that you can find Benadryl over in Denmark too—my husband uses it for his allergies all the time. And I’m pretty sure they carry it under the exact same name in Germany, too, since my brother-in-law was taking it a few years back and mentioned it to my husband.

Hey everyone!

I’m a new member here. I’m 23 and living with SLE. My first symptoms were a weird sun allergy and skin redness, plus a fever and that classic butterfly rash across my nose. Doctors actually had to run a ton of tests because everything looked so much like rheumatoid arthritis—which is what they originally suspected during those first six months. But thanks to staying consistent with my meds—I’m on prednisone and Imuran, which are pretty much the gold standard for treating lupus globally—I’m feeling great today. Honestly, I look pretty good too, even though I’ve picked up some extra diagnoses along the way, like lupus nephritis and Sjögren's syndrome. Sorry if this sounds a bit messy, but if I tried to write this out using all the formal medical terminology, I’d be stuck hunting down my lab reports just to get the exact Latin names right. Hopefully, you guys get what I mean!