Thursday, October 9, 2014

I Used Topical Steroids For The First Time In 15 Months!

What I'm about to say is going to be controversial. But, what is new? After 15 months of going through topical steroid withdrawal I used my old ts Betamethasone Dipropionate Ointment USP 0.05% twice a day for two days and about 3 other applications a few days later. My skin cleared 100% and remained that way for about two weeks and then reverted back to where it was prior to the 3 days worth of applications. It did not revert back to where I was 15 months ago. I knew it wouldn't.

If I had to do my tsw over again, and knowing what I know now, I would have used it much earlier. I would have no problem using the stuff for a total of two weeks yearly just to bring relief at key times during my tsw recovery period. In retrospect, I wish I had used it during my wicked 7th month flare, and again a couple months after that. I believe TS are relatively safe to use if used as directed by the pharmaceutical companies, which is two weeks per year. Remember, it's our doctors who failed us by not telling us this info and by continuously filling our prescriptions.

I used my old Rx ts which actually expired in Feb of this year. I have a huge tube of it which I starred at for 15 months before making the decision to use it. But please keep in mind, I only used it so I could avoid an infection from the ocean. I do plan on using it again, only at 3 month intervals, and for only two small applications per day for 2-3 days. I'd love to use it right now but I know I have to wait another two months. I would only use it if I really needed to (as in the case of going to Hawaii like I just did), or if I felt I needed a break. I currently have one finger that is slightly swollen and inflamed but I will not put myself in a position ever again where my body will become addicted to it. I DO NOT want to go through tsw ever again! I believe TS are safe to use two weeks per year, period. Any more and you take the chance of becoming addicted and having to go through tsw again. So knowing this, I figure I can break those two weeks up into about 5 three day applications spread apart by several weeks or months (14 days worth total).

Remember, it's the amount one uses and length of time one uses that determines whether we become addicted, and whether our bodies are damaged. It was the accumulation of 20 years of using a small amount every couple of days that finally caught up with me and caused steroid induced eczema to break out on other parts of my body. At 15 months tsw my body has pretty much recovered from most of the damage those 20 years did, along with the following two years of heavy usage on my hands.

Everyone talks about changing diets and so forth to get at the root of the cause of the skin rash that led us to using ts in the first place. My skin was fine before using ts 22 years ago. I just had a tiny spot of psoriasis that really didn't bother me, so I am not interested in depriving myself of the food I love to eat. I can always eat a clean diet when I die, and I will die eventually. There is no stopping that. It's a quality of life issue for me, which means a trade off. If I live to be 70 instead of 80 or 90 then in the large scope of things it's not all that big of a deal to me. At least those years were spent enjoying myself. I could have died a number of times via other means by now so I feel quite lucky to be here anyway.

My point being, I had little skin problems until I used a very tiny amount of ts daily for 20 years. My skin was fine prior to using 22 years ago (just had a tiny spot of psoriasis the size of a pea), and it has been fine since, except for what the ts did to it on the last two years of using it after it had accumulated in my system for 22 years. It was not my diet that caused steroid induced eczema to break out on my body. It was the steroids.

Anyway, my skin continued to worsen the closer I got to leaving on my vacation and once I got there and talked to some locals about the risks of going into the ocean with open skin I decided I'd rather risk using ts for a few days then risk an infection which could be life threatening. I'm very glad I made the decision to use them, albeit it was an extremely difficult decision to make. But, I can't tell you how good it felt to have fully healed skin again! Ever since I healed fully at my one year mark and went back to using soap and shampoo for two weeks before breaking out again, I broke out in a large eczema like rash behind my left leg and it would not go away. It acted like regular eczema and wasn't an issue but it was a daily thing where I'd scratch it until all the scabbing was gone once a day since then. Now it's gone! I put up with it for the last 9 months, but again, now it's gone! I wish I had put ts on it 5-7 months ago. Just a very tiny amount and just for a couple days, maybe three.

Will using ts like I did at that point in my recovery set me back to square one. NO! I would have to use it for another 22 years to get to that point. I feel as though it was more of a help than a hindrance, but the key is minimal usage for a short period of time. One only needs to read Dr. Fukaya's work to understand why this is safe to do. It takes two weeks of usage before the outer layer of skin (epidermis) begins to break down, and months before the inner layer (dermis) begins to break down at which point one can safely say we have become addicted. Using ts for a few days in very small amounts isn't going to harm anyone in any long lasting way imo.

So again, if I had to do it over again I would have used ts to clear my skin at key times during my tsw. I just would be sure to not use more than two weeks worth of applications in any one year period. I figure I have at least one weeks worth to go in the next 12 months and will happily use it if my skin gets unbearably bad.

Remember, we all got into this mess because our doctors failed to tell us to use for two weeks or less per year and we all used ts every day for years. The doctor that initially prescribed betamethasone to me told me to apply it every day regardless if the rash was gone or not to keep it away. All doctors I saw for the next 22 years years after that just kept renewing my script, but never once did one single doctor I saw over those years tell me to stop using it, or tell me the risks of using it. I was asked why I was using it but never told anything after answering the question. This would be like a doctor telling me to use antibiotics, but not how to use them, and continuously filling my script for them for multiple years.

My skin cleared 100% for two solid weeks a few months ago and I began to take showers and be normal again. I used both soap and shampoo for the first time in a year for two weeks. The soap caused my hands to break out again. I asked Dr Fukaya about all of this in my search for answers and this is what he told me just a couple days ago:

"It is a wise idea that you utilize TCS while caring not to be addicted or overuse. TCS is really a good medication if used smartly. Most of sufferers of TSA/W can’t accept it psychologically.
It is a good news that TCS worked well on your skin. If you are still through TSA/W, it would not work well.
As you find, detergents or soaps are aggravating factors to eczema. Please find Dr. Cork’s description in the following article.
Now your skin must be through hypersensitivities after TSW.
You could use soaps again in a year or two"

What I found interesting was this comment, "Most of sufferers of TSA/W can’t accept it psychologically." Man, I sure could identify with that statement! I thought I would never touch the stuff again no matter what. I was pig headed for thinking that way. If it's safe to use for two weeks a year why not take advantage of it and use the damn stuff at key times when most needed? That psychological barrier was really tough for me to break through. I waited all the way into my second day in Hawaii before making the plunge. Too many locals told me do not go into the water with broken skin or I will get an infection sure as shit. Well, that was finally enough to convince me to go with the lessor of the two evils. I wasn't going to not go into the water. No freaking way! The only reason I was able to overcome my fear was the knowledge I had acquired.

On a slightly different but similar note, I believe that the ingredient polyethylene glycol plays a major role in all this and have to research and find the study I had found many months ago on it. When I was first prescribed ts there was no propylene glycol; propylene glycol stearate; white petrolatum in it but after a year or so I noticed it was added. I vividly remember asking my pharmacist at the time for the "old" stuff without the added ingredients and told it was no longer available. When I research this ts I always find this warning: "This product may contain inactive ingredients, which can cause allergic reactions or other problems." You better believe it! At least two of those "inactive" ingredients are highly damaging to the skin. I will find the study on how propylene glycol interacts with ts and how it affects the body and post it (see my last post in the comments section for these studies I posted links to). You will then see what I'm eluding to. It appears big pharma uses this ingredient for two reasons. 1) a very cheap filler. 2) It damages your skin in the long run while the ts heals your skin in the short run. Therefore, using ts with that ingredient puts one in a position where the skin will never fully heal, which leads one to continue using ts. How convenient eh?

In the meantime, who here has that ingredient in the ts you used? I would bet every single one of you has used this deadly chemical in either your ts, or in a moisturizer. Fess up, inquiring minds want and need to know.