Fighting Topical Steroid Withdraw (TSW)
This is a documentation of my journey through TSW (Topical Steroid Withdraw). I stopped all steroids Dec 2013.
Sunday, September 1, 2019
1 Week Post Stem Cell Treatment at BioXcellerator Colombia
Alright, so I have completed my treatment on 150 million MSC stem cells at the BioXcellerator stem cell clinic here in Medellin, Colombia. Hoping to start seeing some progress here fingers crossed. I have stated to notice some effect, which I mention in the video. Each day I seem to be improving a little bit. I created this video to share my experience with the clinic and to start documenting the progress I see. Sorry the video is so long (27 min)... but there was a lot to cover during the 1 week stay. I will be actually living here in Colombia for 3 months, this is my 4th time living here in Medellin, so it's kinda like my second home. I will be posting another update next week.
Labels:
autoimmune,
BioXcellerator,
Dermatitis,
Eczema,
MSC,
stem cells,
therapy,
treatment
Monday, August 12, 2019
Mesenchymal Stem Cell Video Update #1 - 1 week before treatment!
Tuesday, July 9, 2019
On my way to get stem cells!
So big news, I am going to try out stem cell therapy! In short, I have created a Go-Fund-Me account to help cover costs. It's going to be an expensive treatment, like over $20,000 and will be doing it through the company BioXcellerator. They are based in Arizona but have their clinic in Medellin Colombia and I will be receiving the treatment August 18 through the 25th.
There are a number of reasons why I think umbilical cord stem cells could help my condition, but this is one of the main clinical studies to reference for stem cells and atopic dermatitis if you wish to read the results: https://stemcellsjournals.onlinelibrary.wiley.com/doi/full/10.1002/stem.2401
I will be explain more about my research into stem cells and why it is going to be such an interesting journey! I am looking extremely forward to the procedure and will be documenting my trip as i go here on the blog!
Stay tuned :)
There are a number of reasons why I think umbilical cord stem cells could help my condition, but this is one of the main clinical studies to reference for stem cells and atopic dermatitis if you wish to read the results: https://stemcellsjournals.onlinelibrary.wiley.com/doi/full/10.1002/stem.2401
I will be explain more about my research into stem cells and why it is going to be such an interesting journey! I am looking extremely forward to the procedure and will be documenting my trip as i go here on the blog!
Stay tuned :)
Monday, February 4, 2019
BIG MISTAKE - Never go back to steroids!
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!
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!
Thursday, January 25, 2018
Steroid Corticosteroid Potency Explanation!
Disclaimer - I am not a doctor... just a guy who has done some online research and telling you my story.
I want to update you guys with where I am at now. TSW has been hell, my last 3 years using no steroids was the hardest time of my life. But I do not regret the suffering one bit. I learned a lot from it and came more in touch with my body then ever before. The Summer of 2017 was actually not that bad, as long as I was getting sunlight. But once Winter hit around November I was in bad shape again. As mentioned in my last post. And as a result I encountered the devil (steroids) again! But after doing some research I decided micro dosing on the devil might be an option. Let me explain.
I decided to do some research on exactly how much steroids I was on, compared to how much your body should naturally produce. What I ended up finding is that a normal health body should produce 40 mg a day or more of hydrocortisone. Note hydrocortisone is different then pednisone. Prednisone is 4 time stronger then hydrocrotisone and there are many other more potent versions of the steroid/ hormone as you can see on this corticosteroid calculator http://clincalc.com/corticosteroids/.
According to this article some people produce up to 200mg a day hydrocortisone. Now remember, hydrocortisone is the same hormone as the stress reducing cortisol hormone our bodies naturally produces to fight inflammation, but hydrocortisone is the synthetically man made version used for medication . And it is said, taking over 40mg of a day of hydrocortisone can result in damage to the adrenal glands. As stated in this quote from this site: https://stopthethyroidmadness.com/adrenal-info/faq
"How much cortisol does the body normally produce? In doctor Peatfield’s book, he says “The natural output of hydrocortisone is actually variable and may be as much as 200 mg. daily under stress and 40 – 60 mg. in a normal resting state. Obviously then, a dose significantly greater than 40 mg. daily will tend to take over the adrenal production of cortisone, and the adrenals could shut down completely. It must be said at once, so long as this suppression doesn’t last too long, the adrenals will pick themselves up again, and restart producing the necessary cortisone for themselves as before.” Thyroid patients who need ACE or HC doesn’t normally get that high, though."
Ok. This is important! Going over 40mg a day can result in damage to the adrenals. And in theory, you should not take more then 10mg hydrocortisone a day to be safe.
So lets set the daily limit to 10mg hydrocortisone a day just to be on the super safe side...
So how much each steroid should last you if you stayed on the super safe side of 10mg of hydrocortisone a day? Lets do the math!
Here is a corticosteroid calculator that is really helpful and everyone should know about! http://clincalc.com/corticosteroids/
Now, my hypothesis is this. Cortisol is a natural hormone. And I have come to the realization that my body might be damaged. My adrenal glads simply do not produce enough cortisol resulting in inflammation and damage to the body. So for the winter months I have been taking 2.5mg a day of prednisone to keep me from going crazy. This is the "safe" threshold of what I described up above. And this has helped tremendously, and the side effects have been minimal so far. My daily life has returned to normal. I know I might be damaging my adrenals even more and this has me a little scared... But really 2.5mg is very little. So for now it's a decision I chose to go. Eventually when the Sun returns, I want to try and cut the devil off totally again. But micro dosing has ended my winter depression and I am doing really well. I will not let myself go over 2.5mg a day and if anything I want to switch to 2.5mg every other day starting in the spring, then stopping in the summer.
Thanks for reading,
Happy Healing to you all!
I want to update you guys with where I am at now. TSW has been hell, my last 3 years using no steroids was the hardest time of my life. But I do not regret the suffering one bit. I learned a lot from it and came more in touch with my body then ever before. The Summer of 2017 was actually not that bad, as long as I was getting sunlight. But once Winter hit around November I was in bad shape again. As mentioned in my last post. And as a result I encountered the devil (steroids) again! But after doing some research I decided micro dosing on the devil might be an option. Let me explain.
I decided to do some research on exactly how much steroids I was on, compared to how much your body should naturally produce. What I ended up finding is that a normal health body should produce 40 mg a day or more of hydrocortisone. Note hydrocortisone is different then pednisone. Prednisone is 4 time stronger then hydrocrotisone and there are many other more potent versions of the steroid/ hormone as you can see on this corticosteroid calculator http://clincalc.com/corticosteroids/.
According to this article some people produce up to 200mg a day hydrocortisone. Now remember, hydrocortisone is the same hormone as the stress reducing cortisol hormone our bodies naturally produces to fight inflammation, but hydrocortisone is the synthetically man made version used for medication . And it is said, taking over 40mg of a day of hydrocortisone can result in damage to the adrenal glands. As stated in this quote from this site: https://stopthethyroidmadness.com/adrenal-info/faq
"How much cortisol does the body normally produce? In doctor Peatfield’s book, he says “The natural output of hydrocortisone is actually variable and may be as much as 200 mg. daily under stress and 40 – 60 mg. in a normal resting state. Obviously then, a dose significantly greater than 40 mg. daily will tend to take over the adrenal production of cortisone, and the adrenals could shut down completely. It must be said at once, so long as this suppression doesn’t last too long, the adrenals will pick themselves up again, and restart producing the necessary cortisone for themselves as before.” Thyroid patients who need ACE or HC doesn’t normally get that high, though."
Ok. This is important! Going over 40mg a day can result in damage to the adrenals. And in theory, you should not take more then 10mg hydrocortisone a day to be safe.
So lets set the daily limit to 10mg hydrocortisone a day just to be on the super safe side...
So how much each steroid should last you if you stayed on the super safe side of 10mg of hydrocortisone a day? Lets do the math!
Here is a corticosteroid calculator that is really helpful and everyone should know about! http://clincalc.com/corticosteroids/
- 1 20 mg pill of prednisone
- 1 mg prednisone = 4mg hydrocortisone
- So 20mg prednisone = 80 mg of hydrocortisone.
- 80mg / 10mg daily safety limit = 8
- One 20mg pill should last you 8 days if you follow the safety limit.
- Note the doctor prescribed me 60mg per day of prednisone! Which is ludicrous because that 60mg is like 1 month of steroids if you follow my safety limit...
- 1% hydrocortisone cream - 1 tube 28 grams/ 1oz
- 1% hydrocortisone cream means 10mg hydrocortisone per gram of cream.
- It has a 12hr half life. = .5 day half life.
- So one tube has 280 mg of hydrocortisone.
- 280 / 10 mg / day = 28 days * .5 day half life = 14 days.
- 1 Tube should last you 14 days if you follow the safety limit
- .1% triamcinalone - 1 tube 28 grams/ 1oz
- .1% means it contains 1mg hydrocortisone per gram of cream
- Triamcinalone has a 24 hour half life = 1 day half life
- 1mg triamcinalone = 5mg of hydrocortisone
- 1 tube 28 grams/ 1oz of .1% triamcinalone cream = 28 mg triamcinalone * 5 = 140 mg of hydrocortisone
- 140 / 10mg / day = 14
- 1 tube should last you 14 days
- .1% triamcinalone - 1 Jar 454 grams
- .1% means it contains 1mg hydrocortisone per gram of cream
- Triamcinalone has a 24 hour half life = 1 day half life
- 1mg triamcinalone = 5mg of hydrocortisone
- 1 jar contains 454 mg triamcinalone
- 454 mg triamcinalone * 5 = 2270 mg hydrocortisone / 10mg/ day = 228 days
- 1 jar should last you 7 months and 16 days
- betamethasone .1% (super potent!) - 1 small tube 15 grams
- 1mg betamethasone = 25mg hydrocortisone
- betamethasone has a 4 day half life
- 1 small tube contains 15mg betamethasone
- 15mg betamethasone * 25mg hydrocortisone = 375 mg of hydrocortisone in a tube.
- 375mg / 10mg / day = 37.5 * 4 day half life = 150 days
- 1 small tube of betamethasone should last you 5 months...
Now, my hypothesis is this. Cortisol is a natural hormone. And I have come to the realization that my body might be damaged. My adrenal glads simply do not produce enough cortisol resulting in inflammation and damage to the body. So for the winter months I have been taking 2.5mg a day of prednisone to keep me from going crazy. This is the "safe" threshold of what I described up above. And this has helped tremendously, and the side effects have been minimal so far. My daily life has returned to normal. I know I might be damaging my adrenals even more and this has me a little scared... But really 2.5mg is very little. So for now it's a decision I chose to go. Eventually when the Sun returns, I want to try and cut the devil off totally again. But micro dosing has ended my winter depression and I am doing really well. I will not let myself go over 2.5mg a day and if anything I want to switch to 2.5mg every other day starting in the spring, then stopping in the summer.
Thanks for reading,
Happy Healing to you all!
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.
Thursday, March 17, 2016
Keep going! Its totally worth the freedom!
Topical Steroid Withdraw has been the worst thing and the best thing I have ever done in my life. If you haven't heard of TSW go to itsan.org. They well tell you all about it. Now 2 Years, 4 Months. Practically back to normal. No meds, no lotion, no diet change, no nothing... nothing but freedom. I still experience minor patches of eczema that flair in the same spots. Like my arm, and behind my legs, and my face. But this is nothing compared to a couple years ago after stoping the steroids. I don't experience red burning skin or oozing anymore. Just minor "regular" ezcema that seems to flare when entering dusty places, or eating a ton of suger, alcohol or junk food.
Best advise I have is don't stress out over what you think is causing it, because that will only make it worse in the long run. My therory is you just have to wait patiently for your immune system to naturally slowly burn the ezcema and inflamation out. So you will go through good periods, and then flare hard again, only to repeat the process over and over, but each time getting less intense. It's best to get away from your old ways of living because your immune system is used to functioning in a life where you had artificial cortisone, so any place or situation that reminds you of needing the cortisone in your subconscious will trigger your skin to flare. You are a new person off the cream and you must train your brain to reverse negative thinking and old ways of living. I still go through rounds of anxiety where I can tell my body is craving the steroids and I start to flare. But when this happens Marijuana once in a while along with silent meditation can help overcome this. Also explains why all the people who are healed disappear, because once you are healed you want nothing to do with anything that reminds you of TSW. Also, in the later stages of healing, don't take anything that messes with your immune system because this just confuses your natural inmune system and will tak longer to heal. This including basic Advil or Anti Histamines. I found they do help short term but I rebound hard from them, and can send me into a vicious loop if I keep popping them. All meds in my opinion will only make you worse if you depend on them too much and disrupt your own natural energy flow. Once in a while yes, like in the early stages, but try to stay clear of drugs later on in the withdraw. Like I say, I found Marijuana to be the most helpful tool, because it calms the anxiety and does't mess with your immune system like most other drugs do. Anyways, best of luck for anyone tring to stop steroids, its a brutal process but you will learn more about yourself and your body and eventually get your life back!
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