Hey all,
Thought I would do a quick update here. So if you read my the last blog post I did a year ago, you can see that I caved in and went back to the steroids! Basically I was really struggling and wanted some relief. And I wanted to see what happened if I tried only really low doses of prednisone.. But boy, was that a huge mistake...!
Don't do it, do let the doctors talk you into going back to the steroids. I was on low doses of prednisone for about 6 months, plus using hydrocortisone here and there and it f'ed me up big time... I stopped the low dose steroids around July 2017 because I just kept getting worse and worse. Way worse then when I was 3 years into my first withdraw. So I knew steroids is not the answer and never will be the answer...
So I stopped the steroids (again!) July 2017. I knew I needed to go through withdraw again, so I moved to a tropical environment in Medellin, Colombia for 5 months because I know I do better where there is sun and humidity. And boy, did I go through total withdraw again. The oozing started again, then bright red skin, the intense flaking, the pain! Oh man fuck steroids...
Again it took months before my skin started showing signs of healing again. Around December things stated to improve for me again and I moved back to my parents house in Seattle. This is 6 months after stopping the low dose steroids. I then decided to take a trip to Miami Florida where there is plenty of sun and salt water. I wanted to try swimming in the ocean because I have been doing epsom salts baths at home and it seemed to help quite a bit. You have to make sure they are pure epsom salts and not mixed with any fragrance or anything. Also rinsing off with cold water helps a bunch too.
And boy, the salt water and sun here in Miami is freaking amazing! It has practically cleared me. My skin is no longer bright red and I feel the best I have in 5 years. It took about 5 swims and laying in the sun for an hour or two. The first swim freaking burns like hell... but after that it's bearable the next times.
I was looking at myself in the mirror the other day and couldn't believe this was my body. Not a scratch, with regular tone skin and no flaking. And even started crying and thanking god for this temporary relief. I could literally feel the salt water burning the eczema out, and my lymph nodes getting smaller and less swollen. My energy returned, I felt alive again! So I think I need to live on the ocean here in the tropics somewhere. As the salt water/ ocean is a miracle worker.
I will try to post pictures here soon.
Good luck all, and swim in the Ocean!
Showing posts with label Red Skin Syndrome. Show all posts
Showing posts with label Red Skin Syndrome. Show all posts
Monday, February 4, 2019
Wednesday, November 1, 2017
Trying low dose steroids while in the city
I thought I should add a update to the blog here since it has been a while, and came across some people that actually read it in real life! So let me give you guys a quick synopsis of the last 2 years of topical steroid withdraw I have endured.
For the most part, I have been doing pretty good. Basically, for the last 2 years I have been off of all steroids and chasing the sun ;) Once it starts getting cold here in Seattle, Wa in the fall, my eczema starts getting worse. So this year (2017) and last year (2016) I moved to South America to go back to the sun for the winter. Sun and clean fresh air is what seems to keep my skin clear. As long as I have that I am fine. Also entering a new environment in Colombia helped my allergies immensely as well. The food and air is much cleaner and healthier down there, plus the humidity keeps my skin moist and not dry.
I was actually living in South America for the good part of 6 months (from December 2016 to July 2017). I found a nice place in Medellin Colombia that I only had to pay $500 rent for and was on the 10th floor of a nice apartment building. While in Colombia, my skin was completely clear, no issues what so ever. I actually felt like a completely different person! And when I returned, my family said I seem completely different too. I looked way better and was way more relaxed.
But then I had to return to Seattle... Partly because of the Visa restrictions and my work. I run an indie computer game company called 5D Realities. Most the time I can take my computer abroad and do programming but now that the company is growing rapidly I needed to return back to the states to manage things. So I returned in July 2017, got an office in Seattle and for the most part things were fine during the Summer. I noticed I did flare more here in Seattle... but as long as I got summer sunlight and got fresh air out in the mountains on the weekends, I was fine. But now that fall is here and I am under a lot of stress from work I started to break out pretty bad...
On top of that in early October I got a really bad cold. And my skin was flaring and my asthma was horrible. Then the cold moved to my chest and there was a day where I literally could not breath... I even took multiple sessions of the nebulizer for asthma and still couldn't breath. So I went to an emergency walk in clinic. The doctor basically said, you need to take some sort of cortisone/ steroid or your going to pass out and maybe die... So she gave me 5 days of 60mg prednisone.
Talk about a dilemma I was in. The doctor basically wanted to put be on the Devil again! This was a huge decision I had to make. Go back to the steroids or try and wait out the cold.... So I came to a compromise, instead of doing the whole 60 mg dose a day, I took one 20mg pill and split in half and tried that. So 10mg. Of coarse the steroid helped like magic and I felt way better... I stayed on 10mg a day for like a week. Then I switched to 5mg a day for another week, and now I am taking 5mg every other day. My cold is completely gone and my athema and skin has stayed clear for the most part.
I just had an appointment with a dermatologist and asked her, what if I was to stay on 5mg every other day of prednisone? Is this going to be unhealthy? And have long term side effects? Her response was basically she was surprised this was helping at all because that is a small dose. She said an average body naturally produces 10mg to 15mg or natural cortisone a day. And she said perhaps my body is lower and that 5mg might be helping give a small boost to my natural amount. I also found some reports on the long term use of really low doses of prednisone. Basically the conclusion is, the side effects are minimal as found here: https://www.ncbi.nlm.nih.gov/pubmed/11642646
So after weighing the ups and downs I am thinking I might stay on this low dose prednisone. At least while here in the city during the winter. I have to say it does feel strange having the hormone in my system. Even at this low doses. Life almost seem too easy, or trivial. And kind of has this wierd sensation like I am in movie or something? Hard to explain.
But this is basically a quick update I where I am at. My basic conclusion is I think my body produces small amounts of natural cortisone. Probably because I was on so much synthetic steroids as a kid that my body just never learned to produce it... So supplementing with small amounts of predinsone seems to help and keep my skin and asthma in check here in the city, during high stress periods, and during the winter.
Will keep you guys updated here but that is where I am at.
For the most part, I have been doing pretty good. Basically, for the last 2 years I have been off of all steroids and chasing the sun ;) Once it starts getting cold here in Seattle, Wa in the fall, my eczema starts getting worse. So this year (2017) and last year (2016) I moved to South America to go back to the sun for the winter. Sun and clean fresh air is what seems to keep my skin clear. As long as I have that I am fine. Also entering a new environment in Colombia helped my allergies immensely as well. The food and air is much cleaner and healthier down there, plus the humidity keeps my skin moist and not dry.
I was actually living in South America for the good part of 6 months (from December 2016 to July 2017). I found a nice place in Medellin Colombia that I only had to pay $500 rent for and was on the 10th floor of a nice apartment building. While in Colombia, my skin was completely clear, no issues what so ever. I actually felt like a completely different person! And when I returned, my family said I seem completely different too. I looked way better and was way more relaxed.
But then I had to return to Seattle... Partly because of the Visa restrictions and my work. I run an indie computer game company called 5D Realities. Most the time I can take my computer abroad and do programming but now that the company is growing rapidly I needed to return back to the states to manage things. So I returned in July 2017, got an office in Seattle and for the most part things were fine during the Summer. I noticed I did flare more here in Seattle... but as long as I got summer sunlight and got fresh air out in the mountains on the weekends, I was fine. But now that fall is here and I am under a lot of stress from work I started to break out pretty bad...
On top of that in early October I got a really bad cold. And my skin was flaring and my asthma was horrible. Then the cold moved to my chest and there was a day where I literally could not breath... I even took multiple sessions of the nebulizer for asthma and still couldn't breath. So I went to an emergency walk in clinic. The doctor basically said, you need to take some sort of cortisone/ steroid or your going to pass out and maybe die... So she gave me 5 days of 60mg prednisone.
Talk about a dilemma I was in. The doctor basically wanted to put be on the Devil again! This was a huge decision I had to make. Go back to the steroids or try and wait out the cold.... So I came to a compromise, instead of doing the whole 60 mg dose a day, I took one 20mg pill and split in half and tried that. So 10mg. Of coarse the steroid helped like magic and I felt way better... I stayed on 10mg a day for like a week. Then I switched to 5mg a day for another week, and now I am taking 5mg every other day. My cold is completely gone and my athema and skin has stayed clear for the most part.
I just had an appointment with a dermatologist and asked her, what if I was to stay on 5mg every other day of prednisone? Is this going to be unhealthy? And have long term side effects? Her response was basically she was surprised this was helping at all because that is a small dose. She said an average body naturally produces 10mg to 15mg or natural cortisone a day. And she said perhaps my body is lower and that 5mg might be helping give a small boost to my natural amount. I also found some reports on the long term use of really low doses of prednisone. Basically the conclusion is, the side effects are minimal as found here: https://www.ncbi.nlm.nih.gov/pubmed/11642646
So after weighing the ups and downs I am thinking I might stay on this low dose prednisone. At least while here in the city during the winter. I have to say it does feel strange having the hormone in my system. Even at this low doses. Life almost seem too easy, or trivial. And kind of has this wierd sensation like I am in movie or something? Hard to explain.
But this is basically a quick update I where I am at. My basic conclusion is I think my body produces small amounts of natural cortisone. Probably because I was on so much synthetic steroids as a kid that my body just never learned to produce it... So supplementing with small amounts of predinsone seems to help and keep my skin and asthma in check here in the city, during high stress periods, and during the winter.
Will keep you guys updated here but that is where I am at.
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