I am writing this page for anyone who wants to know how I managed to heal my skin from topical steroid addiction/withdrawal faster than most. I say faster because my overall TSW outlook was not good. I used all strengths of topical steroids from age 10 until age 40. I learned about TSW on 2/14/2013. I had gone through a semi-withdrawal 8 years ago where I went from using potent strengths to over the counter strength. I went through 3 years of agony not knowing what was happening to me. I continued to use over the counter TS though and had a brief year or two where my skin was not so bad. Then I went back to work and started increasing my usage again. I never stopped using TS for longer than a week during the last 30 years. So my cumulative usage remained at 30 years when I stopped last year. Compared to others who used TS for a similar length of time, I was looking at a 3-4 year recovery time. I personally could not accept that time was going to be the only way to heal. I could not accept a 3-4 year "sentence" of TSW. So I went on a mission to find a way to get through this faster - and I did find something that worked for me.
My first 7.5 months were pure torture - a constant state of flaring - red, burning, oozing skin. I tried nearly every cream, ointment, oil out there. Nothing helped. I even tried emu oil which seemed to help initially but then stopped helping after a few weeks. I blogged about most of my experiments. I cried nearly every day. Yet during these months I also managed to research cellular repair and so forth to try to find an answer as to why the skin cells did not heal quickly. I read all the articles and research papers and finally determined there had to be something wrong with the RNA of the skin cells. So I searched for someone to help me. I found a naturopathic doctor with a degree in molecular and cellular biology - just the guy I needed! I took my thoughts and ideas to him along with my tortured body and asked him to help find a way to heal the RNA of my skin cells.
When I went to see said ND, I was not in a state of wellness nor was my brain functioning properly. It is a wonder I was able to drive there in the first place. I vaguely remember him telling me that he thought I might have a genetic problem. He wanted to do some blood tests, but initially I said no because the thought of getting blood drawn terrified me - I mean where would they draw from when 90-95% of my body was swollen, oozing, and/or excoriated? So I opted to just start basic treatment for this genetic problem. Within 8 days I saw drastic improvement. But I also started moisturizer withdrawal at the same time. I had just heard of MW the week before and thought it couldn't hurt to try. Well the first 5 days hurt a lot as my body was SOOO gosh darn DRY and TIGHT!! But within 2 weeks I felt wonderful compared to what I had been feeling! I returned to work 3 weeks after starting the supplements and MW - that's how good I felt. And a month in I decided to get tested for the gene thing...and sure enough I had a serious MTHFR genetic mutation.
So what is all the buzz surrounding the MTHFR gene? It is primarily responsible for what is called methylation in the body. Methylation is necessary for the conversion of specific B vitamins into an active form. When the methylation is altered because of the gene mutation, all sorts of bad things and diseases can occur. One thing is that cellular repair and cleansing is diminished by anywhere from 40-90% depending on the specific mutation one has. Mine is one of the bad kinds where my cells repair at a 10-20% rate compared to other normal people's cells. A great article on methylation is HERE and explains things a little better than I did.
Bottom line is my cells cannot repair themselves without some help - that help includes ACTIVE forms of B12, folic acid, and B6. Not all MTHFR genetic mutations need the same thing. There are about 40-50 different mutations on that gene alone.
My theory is that the majority of those suffering with TSW have some form of MTHFR genetic mutation. It would explain why some people can use TS and never get addicted and why some of us do. It is estimated that 30% of the world's population has one form of the MTHFR genetic mutation. So far 5/5 of us with TSW have tested positive - that's 100%. Now statistically, a sample of 5 people is way too low to get excited over. However if even 5 more people get tested and all 10 are positive then that is more significant and worthy of looking into further.
If my theory is correct, it would then explain why so many people have good results with MW (moisturizer withdrawal). If you have this genetic mutation AND put creams/lotions/oil on your skin, then your skin cells cannot process all those added ingredients at a normal rate. So your skin gets agitated and starts itching and shedding more. Most people who go through MW, notice a huge decrease in itching and shedding and even swelling. Some people who only take the supplements notice a good change in their skin. Those who only do MW also notice a good change in their skin. But the few of us who do both notice a huge change in their skin and TSW symptoms.
The bottom line is no matter what you do or not do, you will still heal. But the time frame and severity of symptoms greatly reduced for myself . I am now nearly 13 months in. My first 7.5 months were pure agony. However the last 5 months have seen no full body flare, no more swelling, significantly reduced oozing (localized to mini-flares and only when scratching breaks the skin). My flares are localized to specific problem areas only - and those areas have shrunk week by week. The length of my mini-flares went from 5-7 days (in one or two areas) to a few hours in a few areas that are about 2-4 cm long. So intensity, length of time of flares, and skin affected by flares have all shrunk little by little over the last 5 months. I have not had any spreading of problem areas whatsoever. About 90% of my body is perfectly clear...no dryness, no irritation - nothing but strong, smooth skin.
Could I flare again? Could I have a full body flare of oozing, redness, and swelling, and of course pain? I would have said without a doubt about a month ago. But now I am about 99% sure I will NOT ever have another full body flare nor even just a bad flare ever again. That 1% uncertainty is there because I have to be reasonable to some extent. I have to take into consideration what the majority of those with TSW have already been through. However the difference in my skin from 5 months ago and the ever improving condition of my skin speaks volumes to me that my days of torture are well behind me. And at 13 months with a 30 year history, I say that is darn GREAT!
(Just an FYI: in the event I do happen to have a bad flare, I WILL blog about it and post pictures - I do not ever want to give false hope or any false information - I am an honest person and will make sure to always give proper info to all my readers out there!)
Now here is what I did to survive TSW and to increase my healing. Remember this is for information only - this is not an attempt to diagnose or treat anyone. Some of this had to be done under the supervision of a doctor/ND, so please seek medical advice from your own personal doctor or ND.
#1 Moisturizer Withdrawal (MW)
This is easy to do but not easy to get through. I stopped putting anything on my skin - no natural oils, creams, lotions, Vaseline, etc. My skin got super tight, dry, and yes painful! The pain lasted for about a week but peaked on days 3-5. I planned for this and stayed at my mom's so she could help look after my kids while I went through some pretty bad pain. Some people choose to do one body part at a time. For me I did most of my body all at once except for my neck as my neck was the most painful part of my TSW. I chose to continue using Neosporin with pain relief on it for another month or so. I finally did MW on my neck when I had a week off of work and made sure to have plenty of ice packs on hand. I literally used ice on my neck 24/7 for over a week during MW. Of course I used ice on my neck during most of my first 8 months of TSW because my neck never got a break.
#2 Dead Sea Salt baths
I do these now about once a week - sometimes once every 2 weeks. I was doing them about 2-3 times a week. I never found relief in my baths ever. They always burned my skin - whether using plain water or Epsom salts, ACV, or Dead Sea salt. Nowadays I take one for their health benefit but do not find they speed up any healing (nothing noticeable anyways). They no longer burn as bad - and the only burning I do experience is on my hands where the worst and majority of my TSW is currently.
#3 The Supplements!
These are the supplements I use for my genetic mutation:
*** L-5-MTHF (active form of folic acid). I take approx. 6-7 mg of this daily. I plan to reduce down to 1-2 mg when my skin is 100% clear. I use Seeking Health brand.
*** Methylcobalamin (active B 12). These are sublingual and I take 2 mg daily. Plan to reduce to 1 mg daily when 100% clear. I use Solgar brand for this
*** Active B6 - I take this in a combo pill
*** MSM Powder - This greatly reduced my oozing and inflammation. It is necessary for the extra methyl groups needed for healing. I used anywhere from 6 grams to up to 20 grams per day. I would mix it in something tart like grapefruit juice as it has a bitter taste. The tart juice would mask most off the bitterness.
*** TMG - I take this separately - it is part of the whole process of methylation. It is included in the above pill combo which I linked to.
*** NAC 600 mg twice a day. Again I take this as part of the whole genetic mutation and giving my body the tools it needs to get past the mutation. I will not need this for ever - I will only need the 3 active B's listed above. While still dealing with skin issues, I plan to take supplements that can support the process that the genetic mutation interferes with.
*** Glutathione. This supplement I no longer take! I took oral soft gels and liquid forms during the first 4 months. I also did 4 or 5 intravenous injections of glutathione at my ND's office. The IV form was not that expensive - about $60 per visit total I think. Glutathione is the final thing produced in the methylation process. It is responsible for cellular repair and cleansing. Taking it for too long can make your body stop producing its own, hence why I only took it for a few months. Also I could not buy the liposomal type through the internet or health food store - I could only buy it from a health practitioner. The ones you buy online or in a health food store are not easily absorbed. I figured there was no point in wasting my money and went directly for the IV form to kick start my cells healing.
*** Low dose naltrexone (LDN) - this is by prescription only and is made at specialty pharmacies. I started this only a month ago (around my 1 year mark). This has been shown to help those with auto-immune diseases in some studies. Supposedly helps boost the immune system, not suppress it. Noticed a slight decrease in frequency of mini-flares. Could be coincidental. I plan to take for only one month then stop to re-evaluate. If my mini-flares pick back up again, I will go back on this for another month or two.
Other supplements I take to support my body through this process:
*** Vitamin C, D3, and E
*** Fulvic minerals
*** Sea-adine to support my thyroid
*** An adrenal support - I stopped this a few months ago - only took to help boost my adrenals. When I stopped taking it I went through a few weeks of increased fatigue, but now I am back to an ever increasing level of energy.
*** Cod liver oil with butter oil
*** A GOOD probiotic - I use "Ultra" with 50 billion live organisms.
*** Milk thistle - I use this to support my liver. I use it for 2 months then stop for a month. I will do this on/off cycle for another 6 months or so. I had serious liver problems during my pregnancies and the doctors never figured out why - after researching the MTHFR gene mutation, it is all clear to me now.
*** Digestive enzymes - I use these for helping aid digestion.
*** Magnesium as most of our foods are depleted in this.
# 4 The Diet!
I do not go on "a diet" - the way most Americans think of a diet. A diet to me is just a way of eating. For my family, we eat as all-natural as possible. I utilize certain books to help guide me in this venture: Sally Fallon's "Nourishing Traditions" is one of my favorites. We try to eat the way of the Weston A Price Foundations dietary guidelines as much as possible. Basically we try to eat the way God intended food to be eaten. "The Maker's Diet" is a great book as well by Jordan Rubin.
Do we stick to the diet 100%? No, we are realistic. If we travel, it is almost impossible to not eat out. But we try to make better choices, even if we have to pay more for it.
# 5 Exercise
I kept exercise to a basic level during this whole process. I did scant amount of exercising before I started the supplements. After I started feeling better, I spent most of my energy working full time, but threw in a few walks here and there. Now that I am much better, I walk or do the elliptical 2-3 times per week. I am reasonable and know that my body needs most of its energy for healing. Exercising is good but I believe should not be over done. Some weeks I did nothing but sit on the couch. Going grocery shopping was my form of exercise most of my first 8 months.
# 6 Stress reduction
This is near impossible as TSW itself induces so much stress. I found though that when I stressed out about other things in life (most of which was out of my control) I would worsen my flare. So I learned to just not think about the stuff I couldn't control. I watched more TV last year than I did in my entire lifetime before TSW. I had Netflix for everything. I went through 10 seasons Of Grey's Anatomy in 3 or 4 weeks! I played tons of Sudoku on my phone. I was a computer and phone junkie! I also was able to get my kids to do almost all chores (vacuuming, cleaning, putting clothes away, washing dishes, feeding the dogs). I pay them $10 per week each to do all this. I also homeschool them - they were school deprived for the first 4-5 months, but I got back into it and now they are doing extra work to catch up. That is the beauty of homeschooling! Mind you they are ages 12, 10, and 8. So they are old enough to help out yet young enough where taking a few months off of school is no big deal.
# 7 Tanning
I started tanning once I started feeling better on the supplements - around the 8/9 month mark. I find that I would itch afterwards more intensely for the first few weeks. But now I tan 2-3 times per week and no longer itch at all. I find the tanning to keep my skin strong and it seems to help heal my sores slightly better than if I don't tan. I use a tanning bed with both UVA and UVB rays to mimic the sun as much as possible. I also have a low voltage facial tanner at home I use for daily tanning of my hands. I find if I skip a few days, my hands have more mini-flares.
Some tips and advice:
*** The best advice I can give to anyone wanting to come off of topical steroids knowing they are going to go through TSW is to PLAN!!! Do not feel bad about continuing to use TS until a certain date. Make sure you plan for all contingencies - child care, being out of work, etc. READ, READ, and READ some more - find out what worked for others - find out what your TSW might look like compared to your usage. Learn all you can about this first before making any moves.
*** If you decide to get tested for genetic mutations, please make sure you seek out someone trained in this area. The 23&me data can be entered here: https://geneticgenie.org/methylation-analysis/ however treatment still needs to be done under a healthcare practitioner.