Tuesday, January 28, 2014

January 28 – A trip to the Doc

I went to UT Southwestern Dermatology today to see my dermatology team for a couple reasons. First, I want to give light therapy a shot. The docs wanted me to do it a while ago but it was denied by my insurance company. In my research online, I stumbled on a really good deal on a used 6 bulb 6 foot narrowband home unit. My primary doc was encouraging about me getting one, but these aren’t machines you want to fool around with. They also have built in protection that requires a prescription code for it to work. She wants me to have a consultation with the UTSW phototherapy department first. I am hoping the good deal will still be there, as home UVB treatments would be far cheaper than going to a clinic, especially if I have no insurance coverage for it.

Secondly, I was there for a follow-up and to talk to her about my recent flare. I was pleased that there was no mention whatsoever of wanting me to go back on steroids. Also, she was excited about some kind of water therapy and is going to send me some info. She respects my position on TSW and seemed very interested when I mentioned the latest topical steroid study being conducted by the NEA.

I know this is a touchy subject, but I wanted to talk to her about moisturizer withdrawal as well. She was emphatic that there is no way I should not be using moisturizers for one reason: My skin barrier is compromised. She said it is essential I keep my skin moisturized and soft and with a barrier of Vaseline. She was pretty concerned about fissures in my feet and took a biopsy and is putting me on a round of antibiotics.

This was my third attempt at moisturizer withdrawal, and for me it’s a no go. Maybe later when my skin is in better shape. Every time I have tried it my condition has become dramatically worse, and I am convinced that this last attempt has put me into a flare spiral that is going to be tough to recover from.

14 comments:

  1. Hi Dave .
    My name is John and i am in my 16th month of withdrawel . I have just had a quick glimps over your blog and looking at your pics and reading the history i can see that you are going through a bad time at the moment and since you started your withdrawel . pics of your hands look realy sore .Mine were nearly the same as your but i can tell you now mate , they will get a lot better . i suffered all body symptoms and the first few months were hell on earth . just wanted to say that it will all be worth it in the end . I am a member of the itsan forum and will probably meet you more on there . my main tip to all that are starting or in the first year is to stop all moisurisers and use only vaseline . hard to get used to and it ruins your cloths but when you have got used to using it ,it realy helps more than any moisturiser i know . Keep going Dave and i wish you a speedy recovery .
    John .

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    1. Thanks John! That is very encouraging. My doctor wasb emphatic that I use only Vaseline as well. I forgot to mention to her that I use Allegra cream on spots that have a sudden itch. I probably shouldn't do that as Allegra cream has a long list of ingredients (but no steroids!), but it sure works to temporarily calm the itch.

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    2. There has been a lot of discussion about if to use moisturisers or not recently and i havent realy had an input , All i can say is that from day 1 , i stopped all steroids and all my usual moisturisers . I have only used vaseline from day 1 . I knew that my skin barrier was obviously in a bad way and that i was very prone to infections . Within a week of me stopping the steroids , the cuticals on my nails had closed over . I saw this as my bosy shutting itself off from any outside bacteria that could get in from the area around my nails . they have now opened up again and look more normal than ever before . The point about vaseline is that it doesnt moisturise the skin in any way , it only softens the skin and so eases movement and helps with problems like cracking and splitting skin . Also i think it helps keep bacteria out due to the fact that organisms cant live /breed in the layer of petrolium . I could be wrong but thats my thinking , im certailny no scientist . Also ,many common moisturisers have a heap load of chemicals in them that when read ,was a scary thought , knowing that my skin was hyosensetive . When we are going through this i dont think that there is one moisturiser on the market today that would actualy moisturise our skins condition . Its all about ease of movement and trying to avoid our skin cracking and splitting when we move . For me , Vaseline gets a 10/10 , good look with your recovery mate . John .

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  2. Sorry you are having a hard time.

    I think doctor fukaya mentions the narrowband uvb on his blog and says it can be useful. Maybe it is worth a try.

    Hope you get a break soon. We are all rooting for you and empathise with your suffering.

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    1. Thanks Louise! I'll check out Dr. Fukaya's blog regarding UVB. I just want something that helps

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  3. Hi Dave, I'm really shocked your doctor said what he said lol. Seriously though, since you have passed judgement on MW let's at least hear how long you gave it a try. As in 100% moisturizer free for how many weeks? That will at least put it into better perspective for others who may be considering giving it a try. You said you tried 3 times. What is the longest duration you were 100% moisturizer free out of the 3 times? Knowing what durations all 3 times would be even more informative.

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  4. How did I pass judgement on MW? Did you read what I wrote? I said I was going to wait until my skin barrier was intact before doing it. I was about to get checked into the hospital because my skin barrier is severely compromised. Do you know what that means? In addition to being extremely uncomfortable and painful, I run the risk of infection. Are you suggesting that I disobey my dermatologist, the one I found after going through half a dozen that actually recognizes Topical Steroid Withdrawal and supports my withdrawal process, because MW was the best thing FOR YOU? I have not gone more than a few days moisturizer free because I don't want to die. Or at least I don't want to feel that I would rather be dead. I have gone into a serious flare, missed going to see my mom, and feel like shit because I gave MW a go. That's my perspective on it.

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    1. Sorry Dave, didn't mean it to sound that way but I thought you felt like shit before trying MW from what I remember. What you said in your post would scare the hell out of the average reader and would sure make them think twice about ever trying MW. I think it would be insightful for people to know why you didn't make it and I and others have. The only way to know that is to know how you attempted it and and how I and others did it. You and I didn't do it the same ways as far as I know and we had very similar symptoms.

      I just think giving more info helps put it into better perspective. Especially since you stated you tried it 3 times. When I did it I experienced the extra pain as I have mentioned in detail on my blog. I say in my MW guide exactly what to expect and that is 7-10 days for the process to complete for cases like ours. I think I found comfort in my 5th or 6th day and apparently you were very close to that point. I felt like being hospitalized myself but knew I had to do what I had to do to heal my skin. I had to take a powerful painkiller on the second or third day one day was so bad. I'm only saying I was able to do it and didn't find it that much more painful than the pain I was already in so let your readers know any differences in our methods if there are any.

      My concern is also for the many people with less severe symptoms who should be able to do MW quite easily compared to you and I due to having milder symptoms than ours. I don't want them to think MW is that difficult so your post needed some perspective imo. I truly feel for you and am sorry you are in so much pain. I was there myself at one point and understand a lot of you are going through. I contribute a lot of my success to using Dead Sea salt baths and getting sun exposure while making the transition. I don't think you used those aids in your attempts. Correct me if I'm wrong. Just knowing how long you gave it a try is very helpful to people, I'm sure you can appreciate that. Knowing other info is helpful as well.

      Your doctor said "it is essential I keep my skin moisturized and soft and with a barrier of Vaseline." I can't help but laugh at that because that is what most any doctor would say and it happens to be bad advice in my opinion. But I respect your choice and do support you, just wanted to clarify things for current and future readers. I realize we all have different circumstances and we have to make our own decisions. But the more information available the better.

      When you feel stronger down the road and want to give it another shot I'll be here to support you if you want it. I hope this method of using Vaseline works for you but fear it will only delay things. But I do realize there are times when things need to be delayed too. Hopefully you can get those cracks healed so you can stop using moisturizers. I just don't know how that is going to happen though if continuous moisturizing keeps them from healing. I tried it for two months and could clearly see my deep cracks just came and went as moisturizers just continue to weaken the skin. Not moisturizing allows the skin to strengthen. Maybe I'm dead wrong on this and didn't give moisturizing long enough of a chance. Best of luck to you.

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    2. Dave, l feel responsible for encouraging you to do MW in the first place. Last I heard from you I had agreed with you on giving it a shot after you went to see your mom. You never once have asked me any questions while in the middle of doing MW, and you did it without the aid of dss baths, my preferred method when the skin is in that bad of condition. I went from month 3 to month 7 with little discomfort after feeling like I was going to die for 2-3 months. Had a giant flare at month 7 and my skin looks worse than yours right now. However, I am in very little discomfort. That is the difference between moisturizing and not moisturizing.

      I don't think it's that difficult though if done with dss baths and sun exposure. I mean it is terribly painful when the skin is in that condition. But it was terribly painful before I did it so the extra pain I endured was more than worth it for me, and I'm still reaping the benefits. I'll be at month 8 in a few days. I have TSIE (topical steroid induced eczema) on my skin and deep cracks around my knuckles but little to no pain and just minor itching on and off. I wouldn't go back to moisturizing if paid to, only because I've been there done that and I know the difference.

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    3. One other thing Dave, when I did MW I had a script of antibiotics on hand in preparation just in case. By day 2 or 3 I had all the classic symptoms of an infection with the exception of a fever. I started the antibiotics as a precaution at that point. I never felt a need to go to a hospital and I didn't have others experiences with MW to draw upon like you had the luxury of. If I had of, I would have tried to duplicate what they did and not do it a different way.

      Also, noted in my blog on my MW experience, is the fact that I was practically bed ridden for the first week. My MW guide suggests being in a position to not have to leave the house for two weeks when attempting MW. The guide was originally written for cases such as mine where one is early in their TSW and the symptoms are at their worst. If later into TSW this should not be that difficult to do if done properly. Trying this the way you did was bound to fail from the start and going back and forth several times between stopping moisturizers for a day or so and reapplying them again will surely set one into a flare so your flare is certainly no surprise to me.

      I remember about 3-4 weeks after I initially succeeded in MW I tried a moisturizer again because I felt my skin had improved so much that my hands could handle it. Intense itching set in within minutes and blisters set in within an hour. Two hours later I was soaking it off in the tub and had to do MW over again as it sent me into a flare that lasted about a week. I got back to where I was and never turned back. Have been very comfortable ever since.

      I'm not trying to influence you one way or the other. If moisturizing is better for you I don't have a problem with it and it's not my goal to push people into doing anything. I just want the information to be known so people can judge for themselves with as much information as possible and not just little tidbits like "This was my third attempt at moisturizer withdrawal, and for me it’s a no go. Maybe later when my skin is in better shape. Every time I have tried it my condition has become dramatically worse, and I am convinced that this last attempt has put me into a flare spiral that is going to be tough to recover from."

      With no context to that statement it is misleading at best on how difficult MW really is. I don't think it was intentional at all but I definitely felt it needed some perspective. Your attempts at MW were doomed from the start by repeatedly going back and forth from moisturizing to not moisturizing, and it's no wonder it didn't work for you. This has been a problem for many people lately that have tried MW. They all want to reinvent the wheel and when they fail to accomplish what I have experienced they loudly proclaim how MW didn't work for them. People who have done MW the way I did it have had great success.

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  5. Dan, I think we need to stop spinning our wheels here. Please. You are taking a lot of time responding, which I appreciate, but I suspect there only 2 people on the face of the planet that have read this far: you and me. If you are worried that someone else has plowed through all this and will not give MV a go because of what I have said I will happily concede that I have not yet properly tried MW. I am just goofing around trying different things to see what works for me and as far as moisturizing goes I have simply chosen to take the advice of my dermatologist.

    Unrelated Fun Fact™: To replicate the density of minerals found in the Dead Sea, you would have to add 50 pounds of Dead Sea salt to your bathtub!

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    1. Lol, you're right Dave. Sorry about that. I definitely have better things to do but I also learn through teaching. So it's usually a win win for me when I can help others and learn myself along the way. Your fun fact really piqued my interest and I had to do a lot of research to find something relating to why everyone suggests using approximately 2 pounds of dss per bath. I already know from personal experience that the dss baths are very effective at drying the skin, closing open wounds, and healing steroid induced eczema, amongst many other benefits.

      I would assume if you were to take a bath tub full of water from the actual Dead Sea and allowed it to evaporate you would have approximately 3-5 pounds of salt remaining and not 50 pounds. Maybe the evaporated salt is concentrated in that state as opposed to being dissolved in water. Just a theory. I did more research on this subject today out of curiosity and came across one of the most interesting Dead Sea salt research articles I've seen to date HERE. Just skip the testimonials at top and read the study info, especially the info on concentrations used, which clearly show one does not need that high of concentration that the "fun fact" suggests.

      That article only validates in my mind even more what I have already personally experienced in the last several months using the baths myself. And Dave, if it's any consolation, I truly hate taking baths. But I couldn't handle the constant pain and itching moisturizers caused me so I did what I felt was the best thing to do to fix that problem. But, to each his own. I just want to put the information out there so people have a better understanding.

      Another interesting article HEREas well.
      .

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    2. Actually, 50 pounds is conservative. Per Wikipedia, the Dead Sea's overall salt concentration is 340 g/L. Assuming a 30 gallon tub, that would be about 113 liters. 113 x 340 = 38,420 grams of salt, which equals over 84 pounds of salt. I was not implying that you would need to be even close to that to realize the supposed benefits.

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    3. I think you are right after looking into it more. I posed the question to a couple large companies that sell the salt as well as the one I buy from. I asked "since you are recommending 1-2 pounds of dss salt per bath, what information do you base that amount on, because I'm almost certain in order to replicate the Dead Sea salinity one would need over 100 pounds per bath". None could give me an answer except for the company I buy from and she said their company bases their suggestions on controlled studies that have been done by various doctors. She said the only true way to understand why they used the amounts they used in their studies was to contact the people who have done the studies, which makes sense.

      Naturally I'm not going to go that far but there must be a reason why these different doctors in different countries used nearly the same amounts in their studies. Maybe we get enough of the minerals needed from that amount and the considerably larger amount in the Dead Sea is just overkill. I really don't know and can only speculate. I do know the studies are quite impressive and that it has worked for many thousands of people for various conditions. And it works for me a couple people I know who have done them the way I have during tsr.

      Here are a few more controlled studies showing very positive results.

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