Wednesday, August 20, 2014

Skin Update, False Alarm - Not Fully Healed Yet!

I announced at my one year mark I was fully healed but it wasn't a week or two after that I had a flare and my skin broke open again. So, I must retract my healed statement and say I'm not fully healed yet, and I'm now on month 14. The flare has been very minor and has lasted for a few weeks, just a few small skin breaks on my palm with the usual itching at night. I think what caused it was I started showering and using both hand soap and shampoo again for the first time in a year. After about 3-4 showers I noticed the skin on my hands was extremely dry and felt compromised. Then, a few days after noticing that, it broke open. Of course it doesn't help matters much that I eat plenty of sugar daily. I refuse to change my diet for a non life threatening illness and will take the trade off of a longer withdrawal period to eat what I want.

With that said, my recovery has still been a walk in the park since around month 4-5 due to MW at month 3. Not that it's been easy. because it's truly been a royal bitch the whole way. Just compared to the living hell I was in the first few months it's been easy. Almost a minor nuisance actually. Again, that is compared to the first few months.

I'm going to Hawaii soon for a vacation I had to cancel last year at this time, and if I have any open skin breaks a couple days before leaving I'm going to use my old tube of topical steroids to close them up so I don't get an infection from the pollution in the water. I've thought this out thoroughly, even talked to Dr. Fukaya about it, and feel confident that at my stage I can use ts for two weeks with little to no residual ramifications from it. The key will be to not use it again for a minimum of one year. Dr. Fukaya agrees. So, if I need to do this I will report how it goes, and how things go once I cease using it again after those two weeks. I never thought I would ever touch the poison again but there is no way I'm going to not go into the water in Hawaii.

I read something rather interesting the other day while researching the subject of going into the ocean with open wounds and discovered that up until 60-70 years ago it was very common for people to use the ocean to heal different wounds to their skin. Something about the salt helps wounds close. It dawned on me when I read this why Dead Sea salts are so beneficial and have been for me throughout this last year. Not only do you get the benefits of the minerals from the dss, but the salts themselves help close wounds. Something I was unaware of and never thought about. I maintain to this day the best way to recover from tsa/tsw is not moisturizing, doing dss baths, and taking the right supplements. A good diet and exercise helps too if you have the willpower for it. And, last but not least, a positive mindset. Wishing everyone a fast healing.

19 comments:

  1. wassup Dannyboy. I'm so glad that you've almost made it to the other side. you're inspiring bruv. nothing less.

    don't use the steroids at all my friend! I'd be gutted if it sets you back. you're having a rebound flare by the sound of it. it will straight back to square one if you use the creams. that's how we got here in the first place. all this steroid bs is internal. our hormones and all that stuff is thrown out of alignment. takes a long while to be back in order.

    the mw idea you put in my mind saved my sanity. I'm 10000% behind that. common sense isn't it? go and enjoy your holiday, you deserve it!!

    ReplyDelete
  2. Hey Dan,

    Sorry to hear that you're not quite there yet, but glad that you're getting closer and closer!

    I'm pretty skeptical that using steroids on your not-quite-fully-healed skin is a good idea at this point. It seems a little premature since you're not dealing with normal skin yet. I'd hate to see you regretting it a few months down the road. But I can understand your sentiments about wanting to enjoy your trip--especially after postponing it for a year! Good luck in whatever you decide!

    ReplyDelete
  3. Thanks you guys! No worries, if I use it will be a very small amount and it can't undo the healing I've done over the last 14 months because it takes over two weeks before the dermis layer of the skin begins to deteriorate. I've talked to Dr. Fukaya about this and he agrees that using for only two weeks at this point will do no harm. The key will be to not use again for at least a full year, and I won't have a need to, so I'm not concerned at all about it. I'm hoping I won't need to by the time I go anyway.

    ReplyDelete
  4. Hi Dan. I have been reading your blog for quite some time and I like that you explain things in great detail. It helps a lot in understanding what we TSW sufferers are going through. I'm new to TSW. I've started using it this March 2014 and ended this month August 2014. Luckily, I was able to discover blogs like yours that talked about this condition before I can even go about using topical steroids for years like most sufferers do.

    I just have a question. I tried searching all over the internet but I could never find an accurate description of how a flare feels like. I was wondering if you could describe to me how it felt like. I want to be sure I know exactly what I'll be going through. I think I might have just gone through one myself but I wasn't sure. It happened right after I scratched myself so hard in the shower yesterday. There was non-stop oozing everywhere and when I showered this morning, the scratched areas were so painful I wanted to cry. I wasn't so sure if it was just because of the scratching or because that was an actual flare that I experienced.

    I wanted to ask you since I trust your opinion.

    ReplyDelete
    Replies
    1. Hi Eden, as our body slowly recovers from the damage the ts have done our skin goes through periods of calmness and periods of flaring. Progress and regress. Three steps forward, one step back. You will be slowly improving for a while and then all of a sudden the skin gets highly irritated and it worsens for a while. That is the flare. The flares usually last a few days but can often last weeks too. It's difficult to differentiate between the two often times but flares aren't just one time scratch events. They last for days to weeks. You will learn to recognize them. If your skin rapidly improves from here forward I would say you aren't flaring. But if it takes many days or weeks for your skin to calm down and starts showing healing progress again you will know in retrospect it was a flare.

      Your skin hurt like hell most likely from the chlorine in the water. That would have been a good time to take a dss bath instead of a shower. The soothing and healing effects of the dss baths seem to overcome the stinging sensation of the chlorine. Of course, it's best if you can have a good filter to remove the chlorine and other chemicals from your water. There is something about salt and the way it tends to close wounds. I can't stress enough how beneficial dss baths are during tsw. I wish you the best!

      Delete
  5. I think I might just know what to expect from here on. Thanks for that Dan! I hope you will truly heal soon.

    ReplyDelete
  6. Thanks Eden. I have been and felt nearly healed for many months but the residual effects seem to hang on forever! At least it's nothing like the first few months. Not even close. Those days were truly nightmarish for me. Since then it's just been a nuisance more than anything. I truly feel NOT putting stuff on the skin heavily contributes to a much easier healing. I hope your healing comes easy for you.

    ReplyDelete
  7. Excuse me? Did I read the words wrong!?!? Are you actually planning on using ts AGAIN? You, of all people in the whole world I never thought I would read that on here...
    I'm gonna be honest with you, like I've been the whole time we have talked, I think you are stupid to use them. Why on earth would you feel the need to use them on your holiday?! When you get a lot of sunshine AND baths?
    I'm just so confused right now haha.
    Hope you are doing fine now. x Jo

    ReplyDelete
    Replies
    1. Hi Jo, I'm a trailblazer, you should know that! Which is the worst evil? Risking a deadly infection from our polluted waters, or risking a little extra skin irritation from using ts for a week or two? If you understand how ts affect the skin you would know the latter is the safer alternative. I refer you to Dr. Fukaya's blog for a better understanding of how they affect our skin and how long it takes for them to do damage that would require a tsw period. Using ts for 1-2 weeks doesn't cause long lasting effects like it does when using for months or years. I may use just for a couple days prior to going into the water to be on the safe side. Depends on my skin at that time, which is coming soon. Be well.

      Delete
  8. I'm not trying to be rude but I think using TS only 14 months in is going to set you back Dan. I'm just over 2 years in and I'm never going to use the stuff again, no matter what. I don't want you to have a setback months down the road and I'm afraid that's what's going to happen if you use TS again.

    ReplyDelete
  9. Hi Dan,

    Hope you are enjoying your vacation and I'm curious to see how you react to using topical steroids. Maybe the polluted water will do your skin well, haha! Just kidding. I'm still chugging along as well, trying not to declare I'm healed before I have a good run of good skin to prevent getting my hopes up!

    Megan

    ReplyDelete
  10. PART ONE: Okay you guys and girls. What I'm about to say is going to be controversial so you may want to sit down and relax. I used ts twice a day for two days and about 3 other applications a few days later. My skin cleared 100% and remains that way although I can tell it's going to break out again. At least it feels like it wants to anyway. 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 help keep my skin healed. In retrospect, I wish I had used it during my wicked 7th month flare, and again a couple months after that.

    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 feel lucky to be here anyway.

    ReplyDelete
  11. PART TWO: Anyway, my skin just worsened and worsened 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 feels 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 it break out again? Will my hand break out again? Yes, I can tell. It is trying to right now and it's been about 2 weeks since I used. 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. Please feel free to post comments and ask questions.

    ReplyDelete
  12. 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.

    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! Art 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. 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.

    ReplyDelete
  13. This isn't the study I'm looking for but is interesting info none the less.
    http://myhealthexperts.wordpress.com/2008/01/13/cosmetics-toxic-dangers/

    Propylene glycol

    Propylene glycol is frequently mistaken by consumers for ethylene glycol which is a dangerous antifreeze (propylene glycol can also be used for this) that is highly toxic by ingestion. The urban myth/story that my dog licked up the car antifreeze and died, refers to ethylene glycol. There are conflicting opinions about propylene glycol mainly due to the fact that there are several types which are commonly grouped together. They are propylene glycol, propylene glycol alginate and propylene glycol ether, all of which have a different toxicity. Some researchers/writers do not distinguish between them.

    Propylene glycol alginate combines propylene glycol with free alginic acid which is isolated from brown algae by a process involving washing out undesirable salts, an alkaline salt extraction procedure, clarifying and treating with mineral salts. There is no chronic toxicity information available but this chemical is permitted in foods.

    Propylene glycol ethers are eye irritants, experimental teratogens, have dangerous reproductive effects and are ingestible poisons.6 Propylene glycol ethers are commonly used as co-solvents (aids in mixing oil and water) in cleaning products. They demonstrate easy absorption into the skin and have been suspected of liver and kidney abnormalities.7 They’re used in cleaning because they increase the uptake of oils. Propylene glycol ether has also been noted as an experimental carcinogen in animal tests.

    Propylene glycol has been reported as a problem if you already have liver or kidney problems. It is also a problem in cosmetics in areas of low humidity less than 65% because of the potential to remove water from your skin. This is not what you want in a moisturiser. A clinical review published in the American Academy of Dermatologists journal of January 1991, shows propylene glycol to cause a significant number of skin reactions and it is named as a primary irritant to the skin even in low levels of concentration. It can be dangerous to children in large oral dosage (79g/Kg) because it behaves like a general anesthetic causing seizures and changes in the surface EEG. Although cosmetics are not intended for oral use, this effect has caused problems because 1. children eat them 2. propylene glycol is often one of the largest ingredients by volume.23

    ReplyDelete
  14. http://www.medscape.com/viewarticle/742812_4

    "In a recent study, PG was found to be the most common allergen in topical CS, being present in 64% of the steroidal products.[7] It was especially common in branded ointments and gels. Moreover, studies have reported a significant number of patients have a concomitant reaction to both topical CS and PG, which suggests the possibility of cosensitization.[3,8]"

    ReplyDelete
  15. From the same site:

    Case Report

    "A 55-year-old female presented to our clinic with a history of severe recurrent eyelid dermatitis resulting in multiple visits to the emergency room and treatment with systemic steroids. Her left leg dermatitis also recently worsened. The patient's past medical history was significant for a previously treated venous ulcer of the left leg and chronic venous insufficiency dermatitis. There was a positive family history of atopy, but she denied any personal history of atopy. She had been applying amcinonide 0.1% (Cyclocort®) and fusidic acid 2% (Fucidin®) ointments on the leg dermatitis for many years with only intermittent improvement. Patch testing was done with the 2010 NACDG screening series (Table 1). She was found to be allergic to PG, budesonide, lanolin alcohol, balsam of Peru, and glyceryl thioglycolate. We could not identify the source of PG (amcinonide 0.1% and fusidic acid 2% ointments are both PG-free), but this patient could have been sensitized to PG from her personal care products. She was most likely sensitized to budesonide from prolonged application of amcinonide 1% ointment (a class B corticosteroid). Fusidic acid 2% ointment contains lanolin, which was an additional factor for the persistence of her dermatitis. Given that she was allergic to both PG and budesonide, it would have been helpful to know which topical CS were PG-free. Ideally, we would have prescribed her a PG-free class C or D1 topical CS. Consequently, we switched her to tacrolimus 0.1% ointment (PG- and corticosteroid-free) for treating both the eyelid and leg dermatitis. Subsequently, the eyelid dermatitis cleared. Her leg dermatitis occasionally recurs secondary to underlying venous insufficiency, for which she continues compression stocking therapy."

    ReplyDelete
  16. http://www.ncbi.nlm.nih.gov/pubmed/18346395

    ReplyDelete
  17. During my last two years of ts use I used heavily on my hands. During the last year I had persistent skin splits and would cover my hands with Bactine multiple times a day in an effort to keep from getting an infection, and apply band aids. Often times I would have as many as 15-20 band aids on my hands at any given time. I had used Bactine for probably 20 years off and on for minor cuts and scrapes, but not near as much as I was using that last year. Upon my visit with my first Derm she told me to immediately cease using it but never said why. As soon as I got home from that visit and looked at the ingredients I knew. Propylene glycol was one of the ingredients. So, I was bombarding my skin with it from at least two sources in heavy amounts for a lengthy period of time. No wonder I had to use so much ts! The strange thing is, that same Derm gave me moisturizer sample tubes to use that day and propylene glycol was in them!

    I'm still looking for that study I mentioned about a definitive link, but here is another basic explanation in this site.

    http://dermapproved.com/blog/sudden-onset-of-allergic-contact-dermatitis-propylene-glycol-may-be-to-blame

    This one is about the toxin being delivered via IV, but is interesting none the less.
    http://journal.publications.chestnet.org/article.aspx?articleid=1083741

    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2958195/
    "Systemic contact dermatitis can be due to propylene glycol found in foods, especially salad dressings."

    http://www.ncbi.nlm.nih.gov/pubmed/18346395/
    "CONCLUSIONS: Most prescription topical corticosteroids have the potential to cause allergic contact dermatitis owing to vehicle ingredients. Dermatologists should be aware of this possibility and should consider prescribing agents that do not contain potentially allergenic vehicle ingredients."

    ReplyDelete