Posted by: D.I.Yives | December 3, 2012

The “Upper Class” Interview – Part 1

One of the unique things about the Google Group Forum for ITSAN is the different experiences of each RSS patient. Since I have only been going through withdrawals for 8 months now, I have benefited from the comments of those who have been struggling a lot longer than me.  I consider them the “upper class” as they will graduate RSS before me.

I’ve had the privilege of personally interviewing 5 individuals involved with the Google Group Forum. They have been dealing with RSS for 12 months or longer and have not yet been declared survivors of RSS. (But they are getting very close.)

Sit back and relax while you ponder their commentary and candor. It’s been an honor to receive their participation.

The Participants

Louise is 36 and lives in the UK. She began using prescription topical steroids in her early childhood, but for the last 15 years she used them on her face. Louise is blogging about her experience; you may read more about her at: http://topicalsteroidwithdrawal.blogspot.com

Joey is 57 and lives in the USA. She believes to have started using prescription topical steroids around 6 months old, but definitely for the last 40 years she had used them consistently. She noticed in the summer she only needed to use them once a week, as the sun and swimming kept her skin more clear. Joey is blogging about her experience; you may read more about her at: http://redskinsyndrome.squarespace.com

Ami is 22 and lives in Singapore. She only started using prescription topical steroids in February of 2011.

Brendan is 24 and lives in Australia. He is sure that he used over-the-counter topical steroids for approximately 3 years, mainly on his face.

Susan is 60 and lives in the USA. She began using topical steroids occasionally on her eyelids at 28 years old. By age 38, she needed a steroid inhaler for allergies. At 40, her eyelids required consistent topical steroid application and then by 54 years old she started applying them to her wrists and behind her knees. At 56 years old she developed asthma and continued the steroid inhaler.

The Interview

What type of steroids did you use? (Topical, injections, oral, inhaler, etc.)

Joey: I never used inhalers, just topical steroids on my hands. The names I can remember were Aristocort and Triamcinolone and I had two steroid shots in my back about 7 years ago. *** [I stopped all steroids mid April 2011, but then freaked out after 5 months of the steroid withdrawals. So I used low dose oral Prednisone 20mg for a month which cleared me up. When I tapered to 5 mg it came back with a vengeance and I have been withdrawing all along.]
Louise: Topical creams varying in strength from hydro-cortisone to Elocon. Never used oral steroids, but used nasal sprays for hay fever and Seretide inhaler for asthma.
Ami: Topical (mild and moderate) on face, 3 steroid injections and 3 courses of oral steroids (over 5 months).
Brendan:
Topical steroids, Dermaid cream.
Susan: Topical, nasal, asthma.

What month and year did you stop using steroids?

Susan: October, 2011
Ami: October 28, 2011
Louise: November 2011 stopped all topical steroids. I still use my steroid inhaler though.
Brendan: December 17, 2011
Joey: September 1, 2010 (I stopped mid April 2011 and have been withdrawing all along. 26 months since topicals and 19 months since the orals. I am not sure if the orals slowed anything down so I count from September 2010 as my quit month.)

How many months went by before you experienced your first “break” in flares where you actually saw your real skin (whether it was for 1 day or 1 month)?

Brendan:  I think I had some really good stages early when I didn’t really know what was going on however my withdrawal has been very up and down from the flares. My skin has been slowly getting better and is the best it’s been yet however it still is very dry and just had a huge 9 month flare for a prolonged period of time.
Ami: I think around the 2nd month I saw some real skin on my face – I flared exclusively on my face for 7 months, then it spread to my body though.
Louise: Three weeks into withdrawals I had a break of a day or so when my skin seemed calm, but very quickly flared up again. First true break was about 6 months in.
Susan: I never had a real break where I cleared up. I had constant small ups and downs all along.
Joey:  11 months. Had a 3 week total break in July 2011 and no rashes or itching. Very strange…

What are your go-to ointments?

Louise: Body shop hemp hand protector. It is nice and thick and great for dry skin.
Joey:  I make my ointment out of Spectrum palm oil and zinc oxide powder and also use the palm oil alone. My next home-made one will be from grass-fed beef tallow.
Ami:
No ointments. If my skin is really bad I use some Dr. Alkaitis Soothing Gel (Aloe Vera).
Susan: I started with Vaseline, and then moved to palm oil, then cocoa butter. Now I use beef tallow, avocado oil and a little Vaseline around the eyes.
Brendan: No ointments, I bought this Dermamed Skin Cream. (Look into it it’s an all-natural steroid equivalent for treating skin problems. THIS IS WHAT DOCTORS SHOULD GIVE OUT; NOT STEROIDS) Argon oil and Sorbloene. I’ve gotten to a stage where I’m not sure if I should cut back on the creams or keep slathering them on???

What are your go-to herbs and meds for itching, sleep, redness and pain?

Susan: I never found anything that noticeably helped. I used Ambien, Melatonin and Xanax all very briefly, [at separate times], for sleep, but they made me depressed. So I stopped after about 2-3 months of varying them. I tried various anti-histamines but none helped. Baths helped a lot for a while. I used colloidal oatmeal (Aveno), apple cider vinegar and olive oil. I used to take 1-3 baths a day. They were my only relief for a while. I haven’t taken them since about 4 months ago.
Joey: Herbal teas, Extra Sleepy Time every night, Fenugreek, Dandelion, mint, Liver Cleanse with many names I cannot pronounce but it clears the toxins out once a month and ginger tea occasionally.  Vitamin D3 gel tab 5,000 daily. Meds for nerve pain/sparkler pain and jumps. Lryica 75mg in the day with 1mg Ativan and 3 IBProfen takes me through a bad day and then 2mg Ativan with 3 IBProfen for bedtime with Extra Sleepy time tea and 5HTP.
Louise: Domeboro for oozing. Cetirizine as an OTC antihistamine. Chamomile tea for sleep, dandelion tea to calm the blood vessels and nitric oxide. Epsom salt baths.
Ami: Chamomile tea (not sure if it does anything though).
Brendan: Drink tea, go running and ice packs.

Did you change your diet? If so what did you change about it?

Louise: No. I do not personally think that denying myself foods will speed up healing. I eat a balanced healthy diet but have treats too. The big no no is alcohol.  I flare badly after alcohol.
Joey: I was eating a good diet for the past 7 years due to bowel issues and infections so my diet has stayed the same with low-grain, low-sugar foods. My main diet is grass-fed meats, eggs, raw cow or goat milk (which is rare these days) butter, ghee, coconut oil, flax-seed, soaked potatoes, lacto-fermented kraut and veggies, home-made meat broth, greens, powdered green with many vitamins and minerals, magnesium malate daily, lots of water and herbal teas, soups and hemp butter.
Ami: Yup, was a sushi-McDonalds-coffee kind of person before. Now I’m on a gluten/wheat/processed sugar/dairy/nut/chocolate/caffeine/soy free diet (sometimes I sneak in a little organic soy – but very rarely). I don’t eat preservatives, anything processed, colorings, etc. I also don’t eat non-organic chicken, meat and eggs.
Brendan: I don’t really think diet helps. I eat generally healthy. The only diet thing I know that has caused a flare is alcohol.
Susan: Totally. I started drinking green juices and eliminated all sugar, dairy, processed food, gluten. Then I had an allergy blood test and tested sensitive to 37 different foods. I’ve been religiously avoiding them all for a year.

What symptoms have absolutely gone away and at what month did they disappear?

Ami: I used to get night sweats – that disappeared in the 8th/9th month.
Louise: The wet wounds which I had on my legs from January to October.
Brendan: Night sweats went early; itching has gone from 100 – 5% however when it gets flaky after a flare it still can get insanely itchy.
Joey: I just started having some breaks since October. My upper half is no longer too rashy and itchy, which was my 25th month. I would have some breaks here and there but not constant like now. I am a long-term user so I expected to have issue for 2 years or longer. My lower legs and ankles stopped at that time, too. Behind my knees and all the way up to my lower back, both bottom cheeks are raw, rashy and itch like it will never end and this has gone on for 6 months. I pray for patience as I have to use my meds for this bad area now.
Susan: First, I have to talk about the symptoms I’ve had and haven’t had. I’ve had tons of redness. This is mostly gone, but still comes and goes. For many months, I had terrible trouble sleeping. I’d say this is almost completely gone. It has been a gradual process. I think the main thing that turned it around was Network Spinal Analysis which helped my adrenals get back to almost normal. I also took adrenal support herbs. I gradually improved in this area, first being able to go to sleep at 2am instead of 5am, then sleeping more and more hours without waking up, then being able to wake up earlier and stay in bed fewer hours. Finally, now I can go to sleep at midnight and get up at 7 or 8am and often sleep though the whole night.

Another symptom I had was inability to sweat. I could work out for an hour and be dry as a bone. I started doing steam room marathons: 1 to 2 hours at a time; 10 min in, 10 min out. Little by little I started sweating in more and more areas. Now I sweat normally. A huge problem was skin stiffness and inability to turn my neck. This is pretty much gone. I itch a lot less now, or less intensely, and on fewer areas of my body. It’s now pretty much just my hands, face, forearms and occasionally my neck. It was unbearable for a while. Now it’s mostly pretty tolerable, but still an annoyance. I only had a little bit of oozing on a few random days.

What seems to be your most persistent issues? (Redness, flaking, burning, itching, etc.)

Joey: Behind my knees all the way up to my back are all of those but not too much red, more pink and pimples a lot. Lumps [from swollen lymph nodes] in my neck, arms and groin are slowly shrinking. My wrists and hands are up and down and I am not sure when they will heal, as that is where I put the most steroid cream.
Louise: Just general blotchiness on my face at the moment.
Ami: Redness, a very rashy face (the rash never goes away, it’s been in a continuous flare kind-of, it just gets progressively less flarey every month), fatigue and being unable to get a good night’s rest.
Susan: Flaking, dryness, itching, irritation on my hands and face.
Brendan: N/A

How many actual “flares” have you experienced?

Susan: As I said, it’s been constant and slow, no big ups and downs.
Brendan: No idea, I stopped counting, some are big others are small. It’s never fully cleared but gone from bad periods to good periods of skin. It is getting better and less bad.
Ami: I can’t really tell!
Joey: Mine has been a steady flare with small breaks here and there, but my nerves seem to be  the biggest problem as they are waking up as Dr. Rap put it and make me itch and jump a lot in the areas still healing.
Louise: Too difficult to count. Many flares seemed to merge into one another.

 

Stay tuned for Part 2 of ‘The “Upper Class” Interview’. It will be posted later in the week

 

*** Any text in [ ] brackets denotes that the participant’s commentary was edited for grammar and simplicity.

DISCLAIMER: While every caution has been taken to provide my readers with the most accurate information and honest analysis, please use your discretion before making any decisions based on the information in this blog. The HP Esthetics and Eczemancipated author(s) may keep updating old posts on a regular basis and is not bound to explicitly state all corrections made. The interviewees’ expressions in this blog do not necessarily represent or reflect the views or experience of The HP Esthetics and Eczemancipated author(s). They have been recorded for the benefit of others who are coping with RSS and looking for answers to similar questions.

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