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Post by Mini Mia on Feb 16, 2018 0:20:13 GMT -6
I smoked a little as a teen, but never stuck with it.
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Post by Phalon on Apr 7, 2019 8:41:34 GMT -6
I'm posting this as a warning to anyone who uses topical steroids, over-the-counter or prescription, for any kind of chronic skin condition.... Joxie: Me: So, the kids came, and LX was eager to try the CBD ointment for her eczema...and two days later - two days after she stopped using the topical steroid cream - she texted me saying her skin was so red, inflamed, and sooo very painful that she was just sitting in the middle of the floor, crying. She got scared, and started using the steroid cream again. This wasn't the first time - during the past year and a half, every time she stopped using the steroid cream, her eczema would come back with a vengeance almost immediately. Visits to the dermatologist would result in a steroid shot, and/or a prescription for a stronger topical steroid. Then came the prescription for Eucrisa - the non-steroid eczema treatment (I had posted earlier Elidel, which wasn't correct), that insurance denied because it's expensive and steroids are cheaper. I immediately started doing homework on the Internet and found it's not her eczema coming back, it's a condition caused by the steroids - Topical Steroid Withdrawal (TSW), also called Red Skin Syndrome, that millions of people suffer through, but a horrible condition that few in the medical community recognize: www.itsan.org/what-is-rss/Red, burning, oozing, cracking, peeling skin, hair loss, chronic fatigue, mood changes that can last weeks, months, or years. It's recommended that for school-age children suffering from TSW that they be home-schooled, that college students take a few semesters off school, and the working people and their caregivers take leave. There are literally hundreds and hundreds of websites, blogs, and YouTube videos about this condition from some in the medical field, but mostly from people suffering from TSW, but still it's largely ignored by most doctors, or they've never heard of it. After learning about TSW, LX just started her journey this week...and texted me a photo of her face on day two. My heart is breaking.
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Post by stepper on Apr 7, 2019 19:07:09 GMT -6
That sounds awful - you'd think that there should be a way to wean off a medication that was causing problems like that instead of having to go cold turkey. Maybe slightly lower doses of the steroid while still providing relief or some such. And if it's a known problem, I'd be expecting more than "suffer through it" as a solution.
{Spelling corrected because I missed an obviously misspelled word. DUH!! Maybe I was tired when I wrote the original. Yeah! That's the ticket!}
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Post by Mini Mia on Apr 8, 2019 5:20:06 GMT -6
A lot of doctors make money by pushing certain medications over others. If not for the internet, I'd still be using the cream on my eye/s, and wondering how I got Glaucoma.
Sending LX good, healing vibes.
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Post by Phalon on Apr 8, 2019 8:01:22 GMT -6
Good point, Stepper. Yes, there are a number of weaning "schedules" (for lack of a better word) depending on how often the steroids are used, and the strength of them as opposed to stopping immediately. Last time I spoke with LX on the phone about a week ago, she was going to wean herself off of them, following a two day off/one day on schedule for about 20 weeks, and then switch to a lower strength steroid cream for a number of weeks, etc; I'm not sure if she changed her mind, though. Many people, from what I've read, opt to going cold turkey, because the weaning process takes so long. The healing process is different for everyone though so the time varies.
It's not only the doctors; it's the drug manufacturers and their lobbies in Washington also. Xena Sis compared TSW to the rampant opioid addiction in this country. There's a drug that works, it becomes over-prescribed, over-used, and then a drug that was once helpful becomes a major health problem. From what I've read, topical steroids were never meant to be used more than for a two week period - by contrast, LX, for example, was prescribed an on-going prescription and directed to use it "as needed for control of eczema".
In a kind of related topic, I read a news article last week about the food lobbies and chemical lobbies. In our country there are 10,000 chemical additives in our food, many of which have been banned or severely limited for use in the European Union due to health concerns. Many of these additives and preservatives are "grandfathered in" in the U.S. because they were approved for use before health concerns were discovered - they're still allowed for use in our foods here in part because of the monies provided to government by the lobbyists.
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Post by Mini Mia on Apr 8, 2019 16:19:38 GMT -6
It's sad that greed has done away with: "First do no harm."
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Post by stepper on Apr 8, 2019 19:12:09 GMT -6
Pain is a major factor here. She may not tolerate cold turkey and I can't say as I blame her even a little. I have zero experience with this specifically, but I know people deal with extreme discomfort by ignoring it, and then there are people like me who prefer the whine and cry and share my unhappiness with everyone method. Having to be on the sideline while a loved one goes through something exceptionally unpleasant is very difficult - in our case - sometimes all I could do was hold hands and listen to the screams when what I wanted to do was leave the d*mn hospital for a few hours because I couldn't fix it. The one thing I did manage to do was to get her doubled up on morphine. I doubt LX will get anywhere near that level but I'm sure it's hard on you too. Whatever works for her, and I hope she finds it soon, if it takes time then so be it. So long as she can mentally cope with her circumstances, then whatever it takes if fair. Steppet is past the point of being in pain, but she's got a ways to go yet. I'm sure that LX can deal with whatever comes along. And with your support, LX has that person she trusts and can talk to - surprisingly enough that helps quite a bit.
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Post by Mini Mia on Apr 8, 2019 20:43:47 GMT -6
Maybe if she just weens herself down to half, and then quit cold turkey. Maybe the withdrawals won't be as severe as quitting cold turkey right off the bat.
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Post by Phalon on Apr 9, 2019 4:54:15 GMT -6
It sounds like Steppet has quite the champion in her corner. Sometimes, unfortunately, that's all it seems you can do, is be there in the corner, offering support. I'm glad for you both, that she is past the pain.
I wish she was closer; they live two hours away. Mothering by phone sometimes seems so inadequate. The Boyfriend though - dang, he adores her, and she's got quite a champion in him, cheering her on.
My opinion, from what I read, is that weaning is safer when any kind of steroids are involved. You think about how Predisone, for example, is prescribed (having just gone through a couple rounds for my tooth infection) - you start off with a higher number of pills then taper down throughout the week. It seems to me, that's the better way to go through this topical steroid withdrawal, however long it takes.
Thanks guys, for your concern. It's scary for me as a Mom to know that my child has such a difficult process ahead of her.
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Post by Mini Mia on Apr 10, 2019 1:40:16 GMT -6
You are most welcome.
The ACV is helping keep my eyelids less overtaken by the dry, scaly, crusty crud, but there's still a thin, softer layer there that lets me know it's just waiting to make it's move back to full attack. I've even started switching between the ACV & white vinegar to see if a double whammy will give it more incentive to give up and go away.
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Post by Phalon on Apr 11, 2019 5:05:35 GMT -6
Oh! I know something that might help, Joxie.
I sent LX an TSW care box last week after researching what products are best. Site after site mentioned "Egyptian Magic" cream for both topical steroid withdrawal and eczema. I was going to purchase it on-line, drilled, and saw that Walmart had an ad for it; I was able to get it at my local Walmart instead of ordering on-line.
It's an all over face and body cream. LX texted me the other day that she loves it; "OMG, it really is magic", she said. She puts it on at night, and by morning the redness and itch are gone - though it comes back. Her case is extreme right now though.
I got myself a jar too, and have been using it both at night and in the morning. My face got really wind-burned, chapped, and tight-feeling the first couple of weeks back at work, and this stuff cleared it up within a couple of days, and by using it in the morning, it protects my face from getting windburned again. I don't wear make-up at work though; it's not recommended to use Egyptian Magic under make-up because it causes the make-up to cake.
It's ingredients are: Olive oil, beeswax, honey, bee pollen, bee propolis and royal jelly.
If it's at your Walmart, you might want to give it a try.
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Post by Mini Mia on Apr 11, 2019 23:16:11 GMT -6
I'll have to remember to check that out. The ACV does seem to be shrinking the patchiness, it's just a slow process. At least it's keeping it from overtaking the corners of my eyes.
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Post by Phalon on Apr 14, 2019 6:56:10 GMT -6
Apple cider vinegar was one of the things I also included in the care package, because it was mentioned on the majority of sites I checked - it dries up the ooze associated with topical steroid withdrawal, and is also used as an alternative to chlorine bleach baths. One of dermatologists LX saw in the past recommended bleach baths - to my knowledge LX has never followed those recommendations. At the time, she was in college and her apartment only had a shower stall without a tub. I also remember her saying that even if she did have a tub, she doubted she could bring herself to soaking in bleach water for a half an hour. It just seemed like bleach would burn inflamed skin, and make it worse.
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Post by Mini Mia on Apr 15, 2019 3:26:46 GMT -6
It's making a stand off in the inside corners of my eyes. Hopefully it will lose the battle.
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Post by Phalon on Apr 21, 2019 8:00:02 GMT -6
Update on LX's topical steroid withdrawal: She's going at it cold turkey - sort of. I wasn't aware of it, but she had been limiting the use of the steroid cream to the most extreme patches of her eczema for the last couple of months, and even then not applying it daily, so she has been through a kind of weaning process. With this in mind, after learning about TSW, she decided to just stop altogether.
Last I heard from her about it was about a week ago - she said her face was so tight and "brittle" that she felt as if she couldn't make any facial expressions or her skin would crack. She was very happy though that the redness and inflammation is gone!
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Post by Mini Mia on Apr 21, 2019 22:55:24 GMT -6
I hope she won't have to go back on the steroids, and that the AVC, castor oil, and whatever else she's using keeps her clear forever.
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Post by Phalon on Apr 23, 2019 4:47:23 GMT -6
From everything I've read, I think she's got a way to go. She hasn't been through the cracking, oozing, and peeling yet that are typical stages of TSW. Everyone's experience is different though, and I hope she won't have to go through all that.
She texted me yesterday - skin is annoying, she says, but doing ok.
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Post by Mini Mia on Apr 23, 2019 10:15:21 GMT -6
One of the videos I watched mentioned soaking in the bath with ACV in the water. Maybe that will help. I think another video mentioned a bath with oats in it. I wonder what mixing the two would do? Might experiment with a small bucket on hands and arms, and/or feet and legs first? I hope she learns of something that makes the withdrawals much easier to deal with.
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Post by Phalon on Apr 24, 2019 4:54:44 GMT -6
Yeah, I had mentioned apple cider vinegar baths a few posts ago, as opposed to bleach baths; I don't know if she's tried it yet, because right now it's mostly her face that's affected. Apple cider vinegar is an antibacterial and regulates the skin's pH - the same for bleach; that's why doctors recommend soaking in bleach water for eczema patients. I have no idea why they would recommend something as harsh as bleach over apple cider vinegar!!!
When she was little, I used colloidal oatmeal baths often for her eczema. I'm pretty sure it has to be colloidal oatmeal, not regular oats. It seems to me, regular oats would just make for a pasty mess. Colloidal oatmeal is a very, very fine powder. It helped relieve the itch, but her eczema wasn't as bad then as it is now.
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Post by Mini Mia on Apr 25, 2019 2:58:46 GMT -6
Oops. Now that you mention the bleach, I remember that conversation. Guess it was you I got the info from. ==== I've never use oats in bath water, so I'd probably have used the regular oats. Actually, the thought of adding oats to the bath grossed me out, so never planned on doing it.
I never understand why doctors will choose man made meds over nature’s medicinal properties. I’ve been told that doctors will get into big trouble if they do. I’ve had people tell me a doctor would prescribe something, and when asked if it’s what they would personally do, or suggest to family and close friends, they will say something like, “You didn’t hear this from me, but . . . “ And then share a cheaper and better alternative.
‘First do no harm’ seems to be a thing of the past. Those getting rich off of the sick and dying have their thumbs on hospitals and those in the medical field.
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Post by Phalon on May 4, 2019 5:14:37 GMT -6
OMG, Joxie, that's too funny. I'm glad you didn't try it! If it was me you got the oatmeal bath info from, you'd be cursing me out up and down...especially when you would have had to call a plumber to fix your oatmeal clogged pipes!
I've soaked my feet in colloidal oatmeal in the past - it leaves them very soft and refreshed feeling afterward. Although colloidal oatmeal baths are used mainly to treat itchy skin, the foot baths were almost like a treat for my feet, which get sore during those particularly busy-running-around-nonstop times at work....kind of like now. I should pick some up at the store next time I'm there.
They don't call it "Big Pharma" for nothing. Medical research is expensive, and advances in medicine and pharmaceuticals though have certainly saved countless lives, and improved the lives of countless others though. On the other hand, it seems like corporate greed has found its way into the medical industry (the EpiPen pricing scandal first comes to mind).
Finding a doctor you can trust, I think, is important. I see a nurse practitioner in an office full of doctors. She always give me alternatives - 'you can try this prescription drug, or this homeopathic remedy', always recommending trying the natural approach first. Any issues I've seen her for are minor though - I was just there this week for my annual exam, and of course hot flashes came up (it helps that she and I are going through it at the same time). She mentioned hormone therapy of course, but advised a number of other things instead. It's one of the reasons she's been my "doctor" for so many years.
Heard from LX early this week - TSW symptoms are back. Her skin on her face, neck, and arms is red, inflamed, and painful. I knew it would happen. I was hoping I was wrong.
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Post by Mini Mia on May 6, 2019 0:33:30 GMT -6
I got to thinking about why I didn't like the overnight oats that I tried to get to taste just like my 'boiling' cookies. And I realized I don't add as much cocoa as the recipe calls for. I use 1/4 cup, not 1/2 ... so, I sprinkled about a half teaspoon of cocoa into my bowl of rolled oats, and added the other ingredients, and ... LOVED IT! But, it's still too rich to eat every day. I'm still trying to figure out a way to fix oats where I can eat them every day and not get sick of them. Got fingers crossed.
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Post by Phalon on May 9, 2019 4:34:44 GMT -6
Darn it, Joxie! I keep forgetting to do my overnight oats! I've thought about it probably 100 times since I've been back to work, but never when I'm actually at home to make them.
Now would be the time - at my exam last week, I got a(nother) slip to get my blood drawn for my yearly cholesterol test...which I haven't done for the past couple of years.
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Post by Mini Mia on May 16, 2019 14:21:04 GMT -6
Okay. Gonna document my journey.
1) Apple Cider Vinegar worked great, until it became hit and miss. The dry, crusty layers fight hard to keep their grip on the corners of my eyes. (I’ve used plain vinegar and vinegar diluted with water.)
2) White Vinegar worked great, until the dry, crusty layers fought hard to regain control of the corners of my eyes. (Both just vinegar and diluted vinegar.)
3) Alternating between the two worked great, but the dry, crusty layers in the corners of my eyes are determined to survive.
4) Along the way, I included Castor Oil and Coconut Oil. I use Castor Oil when I get up, and when I go to bed, after applying one of the vinegars. The rest of the day, I applied Coconut Oil. (The corners of my eyes are a battle ground, and it’s hard to work stuff in without overdoing it.)
5) Last night a thought popped into my head: Don’t people trek to salty lakes to dip in them for their skin? (Or do I have it wrong?) Anyhoo, I happened to have a Saline Nasal Spray bottle on the table next to the couch, so I put a few drops on my fingers and dabbed it on the dry, crusty layers. A few minutes later, those layers jumped ship. I barely touched them, and they dropped off. ... hmmm ... Maybe alternating between the vinegars, diluted vinegars and the salt water will win this war. Or not.
My eczema is different from LXs. The eczema on my eyelids is external. It’s a layer on the surface of my skin. Hers sounds like it’s internal. But, if ACV is working on it, maybe white vinegar will too? Or salt water? If the ACV is only partially working, maybe adding the other two to the mix will help win the war? She could test a teeny tiny spot to see how it will react. If she’s desperate enough to give it a try. Which, in my case, I was. It isn’t just annoying to me, it’s messing with my vision. And apparently it can cause damage to my eyes, and I only have the one eye I see out of anyways.
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Post by Mini Mia on May 18, 2019 20:27:01 GMT -6
The salt water is working a tad better than the vinegars. A thin layer is fighting to come back, but it doesn't have a really strong grip, so I can scrape it off fairly easily. I sometimes don't even use castor oil or coconut oil at all after dabbing salt water, and then one of the vinegars on my eyelids. (I dab on salt water, let it dry ... and then dab on one of the vinegars ... switching back and forth between them.)
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Post by stepper on May 18, 2019 23:24:24 GMT -6
I'm glad you found something that helps Joxcee. And fortunately it's not some horribly expensive and rare pharmaceutical.
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Post by Phalon on May 19, 2019 7:32:13 GMT -6
LX is journaling hers also. By doing so, she's noticed a cycle her TSW seems to take - flare on face, and just as that starts to clear, the skin on her neck flares and after that, it appears on her arms. Then, as you would say, Joxie, "rinse and repeat". I feel bad for her; when she was here for Mom's Day weekend, her face was just starting to clear, she's very self-conscious about it in public, and it's affecting her self-esteem. "I wish I could tell everyone who sees me that I don't have some contagious disease", she said. I did a drill, and you might be onto something, Joxie! www.allergicliving.com/2012/02/08/using-sea-salt-for-eczema-control/I'm glad it's working for you! LX's favorites products so far, used during different stages of the flares, are Egyptian Magic cream, Calendula tea as a spritz, ACV as a spritz, and CBD face cream for obviously her face and neck, and the thicker CBD ointment for her body. Definitely, I'll mention the salt water also! From everything we've read, different things work for different people, and at different stages of their flares.
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Post by Mini Mia on May 20, 2019 2:21:00 GMT -6
I've since learned that with the salt water, the layer is easier to scrap off _provided_ I have either the castor oil or coconut oil on it as well. Dry equals layer/s stuck to skin like glue ... the CO/s loosens the layer's grip, and they're removable. I haven't found anything yet that prevents the eczema from returning. I'm hoping that over time it will finally give up the ghost. Or I learn of something that will be the straw that broke the camel's back. I know I should be grateful that I can knock it down every time it rears its ugly head, but it isn't something I've had for very long, and memories of the 'good old days' has me determined to have those days back once again.
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Post by Mini Mia on May 20, 2019 3:01:20 GMT -6
I was going to say, "Dead Sea" in my above comment, but I seemed to remember that there were other salt lakes. Maybe not as salty and the Dead Sea, but salty enough to help the skin. And I had read somewhere that taking magnesium would help with eczema. It's also good for painful feet that is caused by calcium being out of whack. Plus, it helps stop the ringing in the ears, which I've had since the 90s.
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Post by Phalon on May 20, 2019 5:41:22 GMT -6
If you do, let me know!
I get a mild ringing in my ears when eating some not quite ripened fruit and raw vegetables - most notably cantaloupe, honeydew melon, and green bell peppers (red bell peppers don't have the same effect). An allergy test when I was a kid showed I had a slight allergy to them. The "ringing" - that's how I've always describe it, but it's really more of a far away fuzzy buzzing sound accompanied by an intense itch in my inner ear - doesn't last long, but is extremely annoying.
Green peppers I can do without, but I love cantaloupe and honeydew melon.
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