Yesterday I went for my regular follow up visit to Dr. Marvin Rapaport office at his Beverly Hills, CA office. He is probably a man in his 70s who shares his practice with his daughter, Dr. Vicki Rapaport. He is an old school east coaster. However, he has had his practice on the west coast, I believe, for the majority of his career. He doesn’t believe in treating lab tests, so he is not inclined to order them. He believes in reviewing the client’s history and symptoms. He is pretty firm with his opinions based on his years of experience and the more than 3000 red skin patients he has treated. Of which he states all of them have come to 100% cure from Red Skin Syndrome.

The last 4 times I have visited his office, I have sat in the waiting room with other Red Skin patient. They have all been children, 3 toddlers and 1 teenager. Their parents sit with them, soothing them, holding them, coddling them with distressed and tired looks on their faces. All of the children within the first year off of topical steroids. It is a reminder of where I once was.

Yesterday, I told the young Asian parents of a small toddler aged boy that I too was a Red Skin patient and that I have been off of steroids 46 months. I told them I once looked like their boy but have reached some level of more stable relief though I am not yet cured. The mother looked at me very seriously with a hopeful desperation and asked “do you really believe that all of this is because of the steroids?”. I replied very seriously with an affirmative “yes”.

Well as this year is about to come to an end I thought I’d wrap up the continuing saga of my RSS journey . 

It’s the end of month 55. 

We traveled to the east coast in October and I did really well. No wheel chairs needed this year during any excursion where there was a lot of walking. In fact, I can walk 3 miles a day and on a good day run 1-2 miles of the 3. If you recall in 2012 I was bed ridden, in 2013 I sprained my hip and couldn’t walk and in 2014 I started physical therapy. So being able to walk 3 miles is a milestone for me.

We came home mid October and I went into a flare. 

At first it was hard to tell. Florida was so humid and rainy that my skin was moist all the time other than my patches. I did get this crazy rash that looked like little pustules on my abdomen  and chest. By the time I got home it was pretty big and really itchy. I thought maybe I had a virus or scabies. But it was just a crazy allergy reaction, most likely hepatic eczema. Also when I got home to the dry California air my face, neck and decollettee shriveled up like a dried apple doll face. It was wild looking. Then my hands and “inbows” got raw and really itchy and then the knees and ankles went. So I spent a couple of days in bed cause my hands were like paws and I couldn’t move them. That was the tip off that I was going into a flare, but my skin just looked eczematic still. About a week later my neck got crazy red and hot and I felt that “bone cold/skin hot” sensation for maybe a few hours. Couple days later everything started to scale up. And I was like, “yup I’m totally flaring – uh, I think”.

I began the “master cleanse” about 5 days ago and I’ve been shedding for the last 4 days. So now I’m like, “yup I totally flared for the last 4 weeks”.

Why has it been so hard to tell? Well it kinda came along really slow in stages, instead of all symptoms at once. And I never really got red and flarey except for my neck for a few hours. But the shedding everywhere was the only thing that really led me to the conclusion that I had completed a “flare cycle”. Shedding always happens after a flare cycle and then my skin is more soft and flexible.

Currently my neck skin is patchy red and itchy still. My hands and knees are the worst areas though. 

If I could just stop scratching for like 7 days probably my ankles and inbows would totally recover.

Interestingly my acupuncturist thought the rash on my abdomen had to do with my liver. So we were treating my liver. During this cleanse, my liver has been dumping like mad so I’m really glad I’m doing the cleanse.

I spent 2016 eating pretty much whatever I wanted, except the month of raw vegan. I was just tired of being so strict with myself all the time and still dealing with all these skin issues despite my fastidiousness. So I thought I’d try going hog wild this year. The result: My weight, despite the increased activity has gone up. So I decided to do the “master cleanse” and go back to a vegan diet. When my body weight goes up so does my swelling and other joint issues bother me more. Besides, who wants to look fat and resign to buying new clothes to “fix” the problem. 

Overall my skin looks the best it has in years. I was just hoping to be clear by now. I’m hoping that the new diet changes will alleviate some of my underlying Autoimmune issues and allow my skin to fully recover. I never thought that this process would take many years. Sometimes I believe this is the best it will get for me. If my hands weren’t so bad, I could lead pretty much a normal life. But there are days I can’t hold a pen or do anything. Those days are getting fewer and farther between, but they still happen. Winter is the worst time of year for me. So I’m just gonna take it a day at a time. The air is so dry and nothing really works to hydrate me. Believe me, 4 yrs and 1000’s of dollars later I’ve tried everything from petroleum to non GMO organic and nothing helps for very long. But I keep trying new things anyway.

Hoping for recovery by summer of 2017.

I’m in month 51 now. Just went through a mild face and neck flare, even my ears shed. My nose is still peeling but other than that it was over within 7 days and just looked like I was sun burned and swollen. Funny I just read Juliana’s May blog post and it sounded like at 61 months she had a similar flare. My hands, wrists, knees, ankles, inbow and neck are still mildly itchy, warm to the touch, prone to swelling, elephant thickened skin. Those areas still flare every 3 months or so. But i havent had a face flare in years.

I saw Dr. Rapaport in June. He said I’m doing well, he thought it would be just a matter of months now, not years. The “tell” will be how I fare in the winter months. I have not made it through a winter without flaring and being in bed for weeks. If I make it through the winter without flaring, he will declare me recovered from RSS. Why am I still RSS flaring after years of steroids cessation? Dr. Rapaport seemed to think all his Eczema patients with RSS actually have an Autoimmune component underlying in the body and that when winter comes we are fighting the Autoimmune issue and repairing the RSS goes on the back burner. Which is why winter flares can be so rough. He said all of his Eczema/Atopic patients with RSS take the longest to heal.

My personal philosophy of what’s happening is slightly different though. I may have blogged about this last year, so I’m sorry if I repeat myself. But I  though I’d share my current philosophy on DNA repair from the damage of Topical Corticosteroids.

I do believe I have an underlying Autoimmune issue that led me to using steroids in the first place. And typically throughout my life February and March are the most difficult months for my body. Except since RSS it’s been the entire rainy season of northern California that blows me out of the water. But my sparse 3-6 month RSS flares happen in the summer and fall too, though much more mildly and recovery is so much quicker that I have additional thoughts about RSS flares at 4, 5, 6, 7 years in.

According to a paper on the US government medical website (http://www.ncbi.nlm.nih.gov/pubmed/12195445) it has been proven that Intramuscular injection of Corticosteroids causes damage to the Mitochondrial and Nuclear of DNA.

Obviously, to me, topical steroids must do the same damage after being used long enough to penetrate the subcutaneous layers of the dermis therefore damaging the DNA of our skin and subcutaneous layers, not to mention vasoconstriction leading to a blood coagulation disorder. So while the chemical of the steroids may actually leave the body (Although I think there is some pharma residue that settles in the body like most drugs do.) we still have to patiently wait for our DNA to repair itself. No DNA doesn’t heal itself all at once (and sometimes DNA damage is irreversible).

Its my limited understanding that the DNA repairs and recheck and repairs and recheck. When it sees the need for repair it destroys the damage and starts from scratch. The closer and closer it gets to being properly repaired the farther and farther the time goes by for recheck so that the body can address other issues. (The most critical issue gets the most attention.) Once it’s not critical than it moves on its merry way to the next issue. Again im not a scientist, thats my limited understanding. Which leads me to think that the flares that come months apart resembling RSS flares are just the latest repair of DNA damage. It can take years and years for damaged DNA to be corrected, if ever corrected completely.

This is why proper rest, exercise and nutrition are so important. Cause we gotta take care of our little hard working DNA repair guys.

It’s ever changing but that’s my current belief.

Yup! Believe it. That’s me on the left @hp_vegivore & Christine on the right @justglowingwithhealth we’re teaming up again on IG, FB and Twitter!

Four years off of Steroids and I’m finally starting to look like myself. Woop woop!!! Though a much older version of myself, it’s really starting to look like me.

I’m going Raw Vegan for the entire month of June, yet again, for the 4th time. I’m excited to get my body back in shape and boost this little immune system of mine. But mostly I’m excited to have another opportunity to help raise awareness for Red Skin Syndrome. I hope that you will take the time to come check us out and maybe go Raw Vegan for a day to cheer our venture on.

Many people think I’m getting paid to do this. But I’m not. I’m trying to support Christine’s ventures since she has been an amazing health coach and support through my withdrawals from Topical Corticosteroids. And I’m trying to keep clearing the junk out of my body in order to improve healing and reduce inflammation. Going Raw Vegan and blogging about my health issues and improvements works in the interest of everyone. And I like to look big picture at things.

So far there is no known research that supports the recovery period of an RSS patient reducing as a result of diet changes. (Trust me there are 100s of people trying all sorts of diets and things to try and speed up their recovery. They post all about it on the ITSAN.org Forum and Facebook group.) Food intolerance and food allergies can be reduced through diet changes, which is something that links people suffering through RSS and other benefits resulting from diet changes. Many who began using Corticosteroids that are now RSS sufferers, like me, were Atopic Dermatitis patients before going on Corticosteroids. Most likely many of them suffered from digestive issues leading to inflammation in the gut and food intolerance. (Dr. Axe is all about healing the gut right now. You can find scores of info on this topic.) Ultimately the reduction of inflammation and the immune boosting results of consuming high quality foods are what I’m going for by going Raw Vegan for a temporary period.

I’m officially 48 months (4 years) off Topical Corticosteroids and counting. Dr. Rapaport says I’ve got 12-18 months left for recovery. Its possible I will still have to deal with the immune and endocrine components that may have began before Corticosteroid use, but I will cross those bridges as they come. I have not stopped “flaring” but they are about 3-6 months apart and last for less and less time. They are also less severe and though I sleep 14 hours a day or more through them. I am able to walk and bend my elbows, which I couldn’t do before. My hands still become unusable though which is annoying to say the least. I look forward to the sclerosis on my hands, forearms, wrists, neck, knees, ankles and feet recovering. I’ve made great strides and I try to focus on them.

THIS IS THE FIRST TIME EVER – I’m posting pictures of what I looked like when I first began my Topical Corticosteroid Withdrawals. I don’t think I need to remind you how horrific it was in the beginning. I also want to say that I’m super self conscious about these pics going up and am unsure how long I will allow them to be posted. But I feel people who are newbie Red Skin Warriors need to see that they can pull through it and that they will get better. I have benefited by seeing other RSS patients photos and I feel it is important that I pay it forward out of respect for those who have bravely gone before me.

Picture 1 – July 2012 I was totally bed ridden. My mom had flown in from across the country to be my caregiver for the 2nd and 3rd month of my withdrawals. My body was 50% covered in burning hot itchy oozing flesh. This is what I looked like from head to sternum.

Pictures 2 & 3 – In October 2012 I actually had a 3 day reprieve from the withdrawals after 6 solid months of “flares”. And then I began my second flare. This time the flare increased from head to my legs. And eventually from head to toe during the flares following.

       

You can see why I’m really happy that today I look like I do in the opening picture with Christine. Mainly my hands are the worst and spotty on my joints and neck. I have been able to resume some what of “normal” routine, though much slower going and limited then before I became bed ridden. But its onward and upward! Can’t look back.

I’m looking forward to this summer of improvement and hoping the winter will not leave me bed ridden this year, as it has every year since discontinuing steroids. Im really hoping this will be all over soon.

Please, starting June 1-30, go check out my guest blog posts on http://www.justglowingwithhealth.com, Instagram, Facebook & Twitter! We’ll be talking about my health improvements, the release of her new Eprogram “21 Days to Glow”, itsan.org and sharing tons of Raw Vegan tips.

 

Many people are seeking to recover from Steroid Withdrawal as quickly as possible. This is understandable as it is excruciatingly difficult to deal with. Sometimes it’s the needed mental endurance that seems more difficult to maintain than the physical endurance.

In the search for quick fixes & medical help, you must ask yourself: “what are you trying to fix?” The answer may be very different from what first comes to mind. Before you reach for more pharmaceutical drugs, which most likely are immunosuppressive drugs with a whole different set of side effects – think.

It is your decision if you want to deal with side effects in addition to steroid withdrawals. Many who use more drugs to relieve the withdrawal symptoms experience side effects, sometimes even creating similar rebound effects as what the steroids caused.

Ultimately the thing to remember is immunosuppressive drugs suppress symptoms caused by an internal problem.

These drugs do not cure. Often they don’t even suppress the internal problem. They just suppress the symptoms of the internal problem.

First solve the mystery of what IS the internal problem that led you to have the symptoms that you chose to suppress with steroids. When you identify that problem you can figure out how to help your body reverse the internal problem on its own. Usually our habits and choices trigger many of the symptoms. By eliminating the triggers you naturally suppress the internal problem. A drug is not required for that level of suppression. Knowledge & awareness are what you require.

Once you recover from the withdrawals, you still may deal with the same symptoms that led you to steroid usage in the first place. So take this time of laying around being sick for research and discovery of what the real problem is so that you are prepared for the battles that may lay ahead.

Licorice root is in all kinds of chinese herbal, naturopathic herbal and auyervadic herbal topical products & supplements because licorice acts as naturally occurring cortisol in the body without the major pharmacy side effects. (It’s in that Dr. Steven Q Wang skincare, who has recently been receiving attention on the ITSAN Facebook page.)

Interestingly, though, licorice can cause a TSW “flare” if too much is taken. Dr. Rapaport actually had a patient self-induce a TSW flare, after being recovered from TSW for several years. The patient had consumed a super high dose of licorice root. So it must be dosed by a professional.

In Auyervadic or Naturopathic medicine, I can’t remember which, anabolic steroid addicted patients are put on a combo of adrenal glandular & licorice root (because they are natural cortisol) to ween people off the prescription form of cortisol (corticosteroids) so the endocrine doesn’t crash while withdrawing from the pharmaceutical drugs. It seems to work without the danger of the prescription side affects.

This weening method should be looked into and researched for TSW.

It’s January 2016, I’m 45ish months off steroids, and my hands and feet are in a bad flare. My ankles started flaring up a week or so ago. But by Wednesday last week they were super swollen and oozing. By Friday my hands were like paws. Super swollen cracked and sandpaper scales. My knees are a bit swollen and it’s starting to get hard to bend them. But the hands and feet are the worst. I’m gonna stay in bed this week. I had planned this week to rest but didnt plsn to flare. Now my bed rest isn’t a choice…

Though I’m flaring it isn’t any where as bad as last winter. December 2014 I went to bed for more than 3 months. It’s now January 2016 and I’m just starting my winter flare.

In November, 2015, my left eye, neck, patches on my chest and hands/wrists, knees, ankles and tops of my feet starting rashing (like eczema). I was bed ridden for 1 week due to my knees and ankles but I was back to moving around in a week. I’m hoping this will be the same duration or less.

Well. I flared.

Microflared I guess, 2 weeks ago. In bed for about 5 days with baklava thin layers of skin oozing yellow plasma that smelled like chicken broth from the cracks. Then I started the shed. Still shedding but barely now – 10 days so far.

The flare is neck, fingertips to elbow, ankles to mid thigh.

Couldn’t bend my knees or my hands/fingers the first week.

Water fasted about 3 days til I started shedding. I find water fasting forces the oozing to stop.

Started week 3 with tons of cracks from wrists to fingertips and in the crease where the elbow bends. Self inflicted cuts on the ankles and knees from scratching.

Still fighting the fungus on my limbs. Tinea Versicolor or Pytiriosis whatever whatever. Had it since summer. Not sure how to kick it but I think my skin would look and feel phenomenally better if it would go away.

Time seems to move surreally when Doug is at work. And sometimes it seems as if time stops. Especially when moving my knees and hands are especially difficult.

Currently my right pointer finger is slung in a make shift popcycle and gauze splint. There are cracks on both side odlf the knuckle that won’t close because I keep bending my finger when I do any thing with my right hand. The splint keeps it straight,  hopefully it will close in a few days.

Ordered Calendula Succus tincture to spray on the joints and irritations, purchased Yincare for my baths for the fungus and started taking MCT oil that is supposed to kill candida and heal the gut cause it’s basically caprylic acid. All at the suggestion of my Integrative physician. All things natural take 8 weeks, so I’m hunkering down thru mid January.

Trying to be vegan and juice fasting on Mondays… who knows anymore.

I mourned the ushering in of winter the first day it rained 3 Mondays ago and the temperature has maintained itself 10-20 degrees lower. I did not want to start another winter with this.

May it be my last. O please let it be the last.

I’ve resigned to face the reality of winter. I’m thankful I’m not back east. Bay area winter is still better. Thankfully.

Dr. Rapaport ' s Blog

This month I took the trek down to Beverly Hills for my regular check up with Dr. Rapaport. I seem to be going every 4 months or so now.

My skin has made some progress since the major flare recovery in the spring. But not as significantly as I had imagined by now.

I had to take a trip to the Urgent Care a couple of weeks ago because I thought I had contracted Scabies from some of my friend’s kids. Thankfully the kids did not have Scabies, they had some other issue.  Which meant my secondary issue was unrelated to theirs. Especially because I had been fending off some infections on my legs for a while. Turned out to just be the regular folliculitis infection that tends to plague us TSW sufferers. A round of antibiotics shut it down. (Normally I avoid antibiotics but the infection had gotten out of control despite my best efforts to kill it with essential oils and supplements.)

I had a follow up with my local doctor post urgent care visit for a skin check and to give him an overall health update. The local Doctor felt that my body was fighting an additional issue called Tinea Versicolor. He said I didn’t have to take anything for it if I didn’t want to but that it was definitely contributing to my itching and discomfort.

Then to top the month off I caught a head cold from the local population, as head colds are going around our circle of friends.

So you can imagine my state of mind taking the 11 hour round-trip trek to Dr. Rapaport ‘ s office. I’m really over being sick, it’s been 41 months of this Red Skin Syndrome madness.

Dr. Rapaport is always really encouraging. The visit to his office started out by him looking at all of my skin, asking me about the last couple of months, touching the “thickened skin” to test the elasticity and how quick the color returns to the skin after it has been firmly pressed. He gave a summary of what he observed of me in relation to the 1000s of patients he has seen over the last 25 years, just like me.

On the positive side, Dr. Rapaport seemed to think I was improved, remarking the skin on my hands is not as thick and the skin on my legs has smoothed out. He wants me to get sunshine, sunshine and more sunshine. He said if I could spend 4 weeks at the Dead Sea he said I may see significant  changes. (Not really feeling a trip to Israel despite my Jewish roots. Just seems unsafe to travel there but that could just be my perception.) He said Hawaii would be a great second option.

Interestingly, as a side note, he said it was the UV rays at the Dead Sea, not the salt, that was truly healing. He gave me a little history lesson about post WW2 victims that had terrible psoriasis were brought there for healing and the study done reported benefits from the UV concentration more than the salt. I would have to find the research to be able to speak anymore on the topic.

On the down side, he was really clear that I’m looking at a 4-5 yr recovery. The original prognosis for me was 3 years when he first saw me in June 2012.

However, my hands are still really jacked up; though farther in the background, my itching is still a constant – especially at night interrupting my sleep several times a night; my knees and ankles though much smoother skin are still elephantising and get cut up. So i have a ways to go.

Why so much longer? Dr. Rapaport said, you know 25 years ago my patients would be fully cleared in 1-2yrs. Rarely would he ever see longer. But he said over the last 5-10 years he has seen a drastic decline in the TSW patients health. He said the patients he sees now are much sicker and are taking like 3-5 years. (We talked about the fact that he has even had, on an almost rare occassion, patients that have taken 7 yrs to heal. But that is quite out of the ordinary.) He doesn’t really have an answer as to why the patients are much sicker except the comment that the steroid prescription drugs are much stronger and potent then what was given in the 1980s. This is probably a major factor contributing to the difference in recovery times.

He encouraged me not to think about how far I have to go, but how far I have come. He always tells me I’m beautiful and that he is proud of me and that nothing unusual is occurring in comparison to his other patients, so I should not worry.

Yes, everyone should see Dr. Rapaport if they have the means to, at least once. As my mom has reiterated to me, and my husband has agreed, “I am glad Dr. Rapaport is able to be there for you through the whole process. I don’t think you could have found another doctor who would have been as specifically knowledgeable as him to stay with you for the long hall…”  I have 3 physicians in my local area who are all really supportive of me and believe Dr. Rapaport, but they just don’t have the experience working with any patients like me and it shows. I don’t say that disrespectfully, I am grateful to them for caring for me. But if they gave me the confidence that Dr. Rapaport instills in me to get through the next hurdle, I wouldn’t need to see Dr. Rapaport. So if you are muddling over the thought as to whether the trek would benefit you, my answer to you would be in the form of a question:

“Do you feel confident enough that you are accurately self diagnosed (or inexperienced practitioner diagnosed) with TSA/TSW to endure all of the hurdles you are sprinting in your recovery process? Do you have people around you who are holding your hand through it and encouraging you to endure the torture and to stay off of steroids? Do you feel you have sufficient research available to you that keeps you going in the right direction? Do you have a physician that will help you get on federal disability while if you are bed ridden? Do you have a physician that will go to bat for you if you need to go to the hospital and fight off the steroids?” If you answer NO to any 1 (or more) of these questions, I would recommend you visit Dr. Rapaport. Check out his new blog: http://www.red-skin-syndrome.com/

I will close by saying, the thought of 12-24 more months of this made me cry. But I’ve made it through 41 months, so I’m well passed the half way point – can’t turn back now.

Well its late and I’m rambling.

I got so frustrated these last two weeks, I just layed in bed because I couldn’t walk due to my swollen cut up knees, arms, hands and ankles. I actually water fasted for 3 days because I just didn’t know what else to do  (as I’m month 39 and I’ve tried everything ) turns out after 48 hours of just drinking tons of pure water my skin closed up 70 % of my cuts. After another 24 hours I started shedding massive amounts of skin and could walk around. The 4th day I started eating melon and drinking melon pureed with water and then the next days I added veggies and other fruits and my body really pulled through.

I would say I was 80% better within the 5 day stretch. I just felt like I’m going through such extreme difficulty I had to resort to what most would call an extreme measure (though i have water fasted in times past). Laying in bed is the only way I could have done it.