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Protopic cream

Started by Morgan Ward6 · · 👁 4 views · 33 replies

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Participants Morgan Ward6Maria Martin11Chris Ramirez80Joshua Brown58brightorca5Drew Hughes10Drew Ortiz43wiredotter14steelpilotwanderingcobra76Morgan Palmer2Gary Wright86Patrick Young2Adam Campbell83wiredsailor13Tyler James5hollowotter10Lisa Myersamberpanther10rowdydrifter17
Morgan Ward6 Morgan Ward6 NewcomerOP
4 messages
joined Jan 2009
#1 ·
Hello, dear friends. I have a six-year-old child diagnosed with atopic dermatitis. He’s allergic to bananas and certain preservatives, which unfortunately manifests through his skin. We’ve been working with doctors on various creams, and some friends actually suggested we head out to Fresno to see a Dr. Smith, which we did. However, his approach there relied heavily on injections. After consulting with our pediatrician, we decided against it, as they felt that method was outdated and carried far too many side effects. Instead, the pediatrician referred us to a private dermatologist. After examining my child, he prescribed Protopic 0.1% cream. He reassured us that this cream doesn't have harmful side effects and can be used safely over a longer period. Since this specific cream isn't readily available here in the States—you basically have to order it and wait forever—we’ve been sourcing it in Austria, where we can get it immediately and at a much better price. The cream itself has been quite effective; while it doesn't "cure" the condition entirely, it definitely helps manage the symptoms and aids in the fight against atopic dermatitis. That said, I’ve been reading various accounts online regarding its efficacy and whether it's truly safe. I would be so grateful if anyone could share their personal experiences with Protopic, or if an experienced dermatologist here might be willing to weigh in with their professional perspective. Thank you all in advance.
Maria Martin11 Maria Martin11 Newcomer
3 messages
joined Jan 2009
#2 ·
I posted this a while back in the Atopic dermatitis thread.

Just a heads-up regarding Protopic ointment: here in the USA, it has received a black box warning. This means it should only be used in extreme cases, and you have to be incredibly careful with the concentration. Furthermore, studies have indicated potential links to certain types of cancer. As a rule, this cream isn't recommended for children under two years old.

My son developed eczema when he was less than two months old. We tried everything—various creams, baths, avoiding baths, Hydrocortisone, cutting out milk and all other potential dietary allergens—but nothing worked. Then his doctor prescribed Protopic (an adult 0.2% dose). A new cream had hit the market, so she figured we’d give it a shot. I was livid, of course, so I went straight to the internet to see what I could find. GRRR. Naturally, I didn't apply it to him, and I printed out everything I found and handed it to the doctor. She just looked at me and said, "Oh, I didn't know." We haven't been back to her since. Anyway, the eczema cleared up by the time he turned two and hasn't returned (I read that it often resolves by age two; if it doesn't, it tends to become chronic).

That was our experience with Protopic ointment about four years ago. I haven't done any recent research to see if anything has changed, but my daughter has eczema now, and while I'm not sure how we'll manage it, we certainly won't be using Protopic.
From what I can gather, your son has been diagnosed with an allergy. Why not simply avoid the allergens altogether instead of trying to suppress the symptoms?
Morgan Ward6 Morgan Ward6 NewcomerOP
4 messages
joined Jan 2009
#3 ·
Thanks for sharing that. I honestly find it hard to believe our doctors could be so uninformed or even just careless—claiming a cream is some kind of miracle cure when you can go online and find so many conflicting explanations about its supposed risks. To the lady I'm responding to: we’re doing our absolute best to avoid allergens, but you know how it goes—it feels like there's always something new popping up, yet the doctors insist everything has already been identified. I'm really at a loss as to whether I should stick with this cream or not, especially since everything else I've learned about seems even more harmful. Regardless, I truly appreciate the insight.
Chris Ramirez80 Chris Ramirez80 Newcomer
4 messages
joined Mar 2008
#4 ·
You really ought to give the Mustela Stelatopia cream a shot—it was honestly our absolute last resort, and it worked when absolutely nothing else could. I know, I know, it’s pricey, but it truly delivers. Just look it up online; you'll see people raving about it everywhere. It’s completely safe, too... it's even formulated with sunflower oil...
Maria Martin11 Maria Martin11 Newcomer
3 messages
joined Jan 2009
#5 ·
Morgan Ward6 said:Thanks for sharing that. I honestly find it hard to believe our doctors could be so uninformed or even just careless—claiming a cream is some kind of miracle cure when you can go online and find so many conflicting explanations about its supposed risks. To the lady I'm responding to: we’re doing our absolute best to avoid allergens, but you know how it goes—it feels like there's always something new popping up, yet the doctors insist everything has already been identified. I'm really at a loss as to whether I should stick with this cream or not, especially since everything else I've learned about seems even more harmful. Regardless, I truly appreciate the insight.

My apologies, I'm not in the US 🙂 and it isn't just local doctors who lack clarity; you see it in Canada too. 🙂 It's not necessarily that they're clueless, but rather that sales and new drug trials take priority. Big Pharma provides significant incentives to physicians to push new medications, even when they haven't been thoroughly vetted and side effects only surface much later. As parents, the responsibility falls on us to ensure our children don't become lab rats.🙂
Joshua Brown58 Joshua Brown58 Newcomer
2 messages
joined Jan 2009
#6 ·
My little one had allergy testing done just two days ago—nothing showed up on the skin tests at all. The doctor mentioned that allergies can still be present even if they don't manifest physically during the test. Honestly, I’m losing my mind trying to manage both the creams and the potential allergens. We’ve been so careful—no Smucker's products, no cow's milk, nothing orange... I've tried everything myself, but nothing seems to work. We have cycled through almost every cream out there, from Mustela and Aderm to various homemade concoctions, and nothing. Then, while we were in Washington, D.C., I stumbled upon a pharmacy called Nature Cure. The woman there gave us this small, plant-based cream (it only cost $13) and we’ve been applying it for four days now—the results are actually visible.
Maria Martin11 Maria Martin11 Newcomer
3 messages
joined Jan 2009
#7 ·
Joshua Brown58 said:My little one had allergy testing done just two days ago—nothing showed up on the skin tests at all. The doctor mentioned that allergies can still be present even if they don't manifest physically during the test. Honestly, I’m losing my mind trying to manage both the creams and the potential allergens. We’ve been so careful—no Smucker's products, no cow's milk, nothing orange... I've tried everything myself, but nothing seems to work. We have cycled through almost every cream out there, from Mustela and Aderm to various homemade concoctions, and nothing. Then, while we were in Washington, D.C., I stumbled upon a pharmacy called Nature Cure. The woman there gave us this small, plant-based cream (it only cost $13) and we’ve been applying it for four days now—the results are actually visible.

Could you please provide the name and ingredients of that cream? I've experimented with several natural options that didn't work for my little one, and I'm running out of ideas. I really want to avoid using Hydrocortisone, even though it's the only thing that actually calms the redness. We are currently in the middle of an elimination diet to pinpoint any triggers; I suspect tomatoes or tomato products, but I haven't confirmed it yet. My son's dermatitis cleared up on its own when he was two, but my daughter is two and a half and is still struggling with it.😢
Joshua Brown58 Joshua Brown58 Newcomer
2 messages
joined Jan 2009
#8 ·
Sorry I'm running a little late with this reply—that cream is called Acidosalus, and you can check out the full ingredient list over at www.naturecure.com/acidosalus.htm.
Morgan Ward6 Morgan Ward6 NewcomerOP
4 messages
joined Jan 2009
#9 ·
Joshua Brown58 said:Sorry I'm running a little late with this reply—that cream is called Acidosalus, and you can check out the full ingredient list over at www.naturecure.com/acidosalus.htm.

Thanks for the heads-up. I’m going to head over to San Diego to see if I can track down that cream; I definitely want to do some digging into its actual effects and how it works before I commit. To be honest, based on everything we've been through, we’re feeling a bit lost regarding what's actually worth using. If we do manage to find it, my plan is to sit down, read the instructions thoroughly, and have a real conversation with the pharmacist. It seems like every doctor has their own specific take on things. Our current physician recommended Protopic, but after seeing all the discussions here about potential side effects—which our doctor completely dismisses—I've learned to be cautious. Please, just stay smart about this. In any case, thank you.
brightorca5 brightorca5 Newcomer
1 message
joined Oct 2009
#10 ·
Hey everyone.

So, I got hit with a seborrheic dermatitis diagnosis (allergic type) about 7 years ago.
Since then, I've scoured basically EVERYTHING online on this topic and even dug through a few books. I just decided to go deep and figure out everything there is to know.

Here’s some recent info on Protopic cream:

First off, read this article:

http://allergies.about.com/od/medica...elprotopic.htm

"The decision of the FDA to give these medications a “black box” warning was quite controversial, and went against recommendations from the professional societies of allergists and dermatologists. The reason this was because the available data did not support that TCIs caused any increase in the risk of any form of cancer. The rate of cancer development occurring in People using Elidel and Protopic was actually below The rate expected in The general population , and The types of cancers seen were not The types seen in People using cyclosporine"

This research from the American Academy of Allergy, Asthma & Immunology is the response to the FDA's claims that Protopic and Elidel might be linked to cancer.

http://www.aaaai.org/members/academy...task_force.pdf

You MUST read this article from 2009—so after the drug had been on the market for 10 years—which also shuts down the cancer link claim.

http://www.prnewswire.co.uk/cgi/news/release?id=99857

"This study supports the safety and efficacy for the long-term use of Protopic(r) to treat adults and children for up to four years."

An old article from 2006 regarding the supposed link between Protopic and cancer:

http://www.naperbrookdermatology.com...g%20Hanout.pdf

Protopic is the only thing that worked for me. I haven't had a flare-up in 8 months. My fear about long-term use is fading, and honestly, it seems like the best move for now.

Anyway, hope this helps a bit if you can't find anything else working for you..
Drew Hughes10 Drew Hughes10 Member
10 messages
joined Jun 2012
#11 ·
Following our dermatologist's advice, we applied Protopic to our child's hands. It provided some relief—briefly—but the patches resurfaced within just a few weeks.
We spent three years battling atopic dermatitis, cycling through nearly every cream and bath soak imaginable, yet nothing seemed to stick.
On our pediatrician's recommendation, we traveled to see a specialist in Cleveland. The consultation ran about $50. We walked away with prescriptions for two custom creams, which we picked up at a pharmacy in Cleveland (totaling roughly $40). Though the packaging noted a 30-day shelf life, the doctor assured us they could be used as needed for at least six months—provided we kept them refrigerated. After applying them to her hands for about four or five days, the dermatitis cleared up completely. Over the following year, she had a few flare-ups; we applied the cream two or three times each time, and it worked perfectly every single time. In total, we only went through about 20% of the supply over that whole year.
Since the original expiration date had passed—and because the label specified a customized cream system—we asked our local pharmacy if they could compound it here to save us the trip back to Cleveland. They had no problem doing it. We didn't need a massive batch, so they made a small amount for us; one cream cost $60, while the other was $13.
Drew Ortiz43 Drew Ortiz43 Newcomer
1 message
joined Nov 2009
#12 ·
Hey there,
Regarding that cream we picked up at the pharmacy in Cleveland—since local pharmacies here in the States can also whip up custom formulas—could you please send over the full recipe? My husband is dealing with psoriasis vulgaris, and honestly, we’ve cycled through just about every cream out there with zero luck. If you aren't allowed to post the specific ingredients publicly, just shoot it over to our email address instead. Thanks in advance!
ivan.prebeg@gmail.com
wiredotter14 wiredotter14 Regular
433 messages
joined Aug 2007
#13 ·
Look, I'm not trying to act like an expert here, but I know what I've been through.

I dealt with dermatitis on my arm for years before a while back.

After rubbing on some 0.1% Protopic for just a few days, the thing that had been screwing me over for 15 years finally cleared up.
Morgan Ward6 Morgan Ward6 NewcomerOP
4 messages
joined Jan 2009
#14 ·
Drew Hughes10 said:Following our dermatologist's advice, we applied Protopic to our child's hands. It provided some relief—briefly—but the patches resurfaced within just a few weeks.
We spent three years battling atopic dermatitis, cycling through nearly every cream and bath soak imaginable, yet nothing seemed to stick.
On our pediatrician's recommendation, we traveled to see a specialist in Cleveland. The consultation ran about $50. We walked away with prescriptions for two custom creams, which we picked up at a pharmacy in Cleveland (totaling roughly $40). Though the packaging noted a 30-day shelf life, the doctor assured us they could be used as needed for at least six months—provided we kept them refrigerated. After applying them to her hands for about four or five days, the dermatitis cleared up completely. Over the following year, she had a few flare-ups; we applied the cream two or three times each time, and it worked perfectly every single time. In total, we only went through about 20% of the supply over that whole year.
Since the original expiration date had passed—and because the label specified a customized cream system—we asked our local pharmacy if they could compound it here to save us the trip back to Cleveland. They had no problem doing it. We didn't need a massive batch, so they made a small amount for us; one cream cost $60, while the other was $13.

Hello, what was your child's exact diagnosis? Also, would you mind emailing me the diagnosis and the specific ingredients used in the cream? j.b.vicic@gmail.com Thanks so much in advance.
steelpilot steelpilot Newcomer
2 messages
joined Mar 2011
#15 ·
I previously touched on this in the sexual health thread, but since we’re discussing a medication that isn't strictly limited to that area, I figured it made sense to start a fresh discussion here. So, here's the situation: for about two years now, I've been dealing with persistent redness in my genital area. It looks like a form of dermatitis affecting the glans and the surrounding skin, and it tends to fluctuate with good and bad days. This whole ordeal actually kicked off after I took a course of Augmentin; my skin became inflamed, and it just hasn't returned to its normal state since then. I've already ruled out any STIs, and so far, I've been managing the symptoms using Travocort and Bepanthen to keep things under control. However, the moment I stop applying the creams, the redness flares up again and red patches start appearing, which forces me right back into using them.
I also experimented with short bursts of Triderm, which provided some relief by dulling the redness, though it didn't actually clear it up. I tried various topical rinses as well, along with Canesten and Byvacin, but unfortunately, nothing seemed to work. Now, after all that trial and error, my doctor has prescribed Protopic 0.03%. My main hesitation comes from reading about the potential downsides of this medication online—specifically that in the US, it received a black box warning due to concerns regarding cancer risks. Has anyone here had experience with this specific treatment? I've noticed it's used for all sorts of conditions like various types of dermatitis, psoriasis, vitiligo, and other skin issues, so I'm curious if there's anyone on this forum who has used Protopic and is still doing great. Ideally, someone who is healthy and can share their actual lived experience.
wanderingcobra76 wanderingcobra76 Member
44 messages
joined Nov 2010
#16 ·
Look, rather than rewriting everything from scratch, just take a peek here:
link to the psoriasis thread
steelpilot steelpilot Newcomer
2 messages
joined Mar 2011
#17 ·
wanderingcobra76 said:Look, rather than rewriting everything from scratch, just take a peek here:
link to the psoriasis thread

I totally get that they have to include those warnings just to protect themselves from lawsuits, but it feels to me like when these drugs first hit the market, those carcinogenicity warnings weren't there; it seems like they were only forced to add them after a few cases were officially registered. You can find all sorts of misinformation online, but I truly feel like there are documented cases where cancer appeared after only a few weeks or months of using Protopic. Of course, a direct causal link hasn't been proven, but those individual cases are on the record. While you can certainly find plenty of fake news on the internet about anything, I don't think all this information regarding Protopic's connection to cancer can be dismissed—there are just too many articles and too many reported instances of people developing cancer following Protopic use for it all to be false.
They say it's all about weighing the risks against the benefits, but honestly, even though this dermatitis takes such a massive toll on my sex life and my overall quality of life—leaving me so frustrated that I'd be willing to try almost anything to fix it—after everything I've read about this medication, I can't just ignore it. On the other hand, I don't quite understand how a drug with such potential side effects is even allowed on the market in the first place.
I was especially shocked when I came across a case involving a man who was treating long-term balanitis with Protopic and developed penile cancer after only a couple of months (I think it was three months, I can't find that specific article right now). That 😲
Morgan Palmer2 Morgan Palmer2 Newcomer
1 message
joined May 2011
#18 ·
Hey everyone! I have an unopened 60g tube of Protopic 0.1% that was originally prescribed for me, but since this specific treatment didn't really work for my skin, I don't have any use for it. To make a long story short, because the packaging is completely intact, I’m looking to sell it to recoup some of the money I spent. If you're interested, please shoot me a private message with an offer; I'll definitely give you a better deal than what you'd find at a local pharmacy.
Gary Wright86 Gary Wright86 Newcomer
6 messages
joined Jan 2012
#19 ·
Would anyone be kind enough to let me know which pharmacy in Washington, D.C. carries this cream?

I'm not local to the D.C. area, so any bit of information would be immensely helpful—an address, the name of the pharmacy, even just the neighborhood...
anything at all, as I am planning to purchase it and Google hasn't been much help.
In most of the threads I've come across, people simply mention that it can be found in certain pharmacies around town, yet they never specify which ones or where they are located.
thanks
Gary Wright86 Gary Wright86 Newcomer
6 messages
joined Jan 2012
#20 ·
Is anyone out there?

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