Tag Archives: Update
Update: Immunotherapeutic options in advanced melanoma
Update: Immunotherapeutic options in advanced melanoma
UPDATE 1-Lilly/Incyte pill beats placebo in mid-stage eczema trial … – Business Insider
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UPDATE 1-Lilly/Incyte pill beats placebo in mid-stage eczema trial …
Business Insider Sept 14 (Reuters) – Eli Lilly and Co and Incyte Corp on Thursday said a mid-stage trial of their oral drug baricitinib showed that at the highest dose it worked … Incyte-Lilly eczema drug shows promise in Phase 2 study … |
Update
Just a little update so I can keep track of what’s going on…
I am still using the Eumovate cream on the initial patch on my hand.
I’ve got little spots of eczema on my forearms and upper arms which I am using the cream on to keep at bay.
I had a blister on my big toe which didnt heal and turned into eczema, the cream is keeping this away but I have to use it every day.
The skin on my cheeks is quite dry but is not eczema yet.
There is some suspicious looking dry patches of skin just infront of my ears but hopfully it won’t become eczema.
Summer is nearly here so hopefully that will help with the dry skin and maybe cure the eczema?
I am quite stressed at the moment as I am arranging a stag do and have a best man’s speech to give at a wedding in about a month. Plus I am skint as usual and have some relationship issues to deal with!
TSW Update: 26 Months Free of Topical Steroids
December 6, 2015 marked 26 months since we stopped using topical steroids (TS) for Brian’s worsening eczema and deteriorating health. Throughout topical steroid withdrawal (TSW) and our attempts at using various alternatives to TSW eczema/itch management, Brian’s pediatrician has been supportive. I thanked him for working with us and not belittling or disrespecting us as other doctors have done to other parents of children going through TSW. He said that his main goal is to have a child be able to live, play, have fun, and do all the things children are supposed to do; whatever route that entails does not matter as long as it works for the child. Thank God for good docs.
Current function
Energy and activities–Running, jumping, laughing, playing, and getting cuts, scrapes, and broken bones like a normal 12-year-old boy. Finished strong in travel baseball and cross country. Playing basketball for the winter.
School: Stays up way too late but manages to get up every morning to walk to the bus stop with friends–even in 30 degree weather. Picking up where he left off last year, he made straight A’s on top of all his activities and despite the eczema/TSW spectre. We’re very proud of our TSW warrior for his perseverance and attitude through the toughest of times. Give yours an extra loving hug today!
Cross country (Brian 2nd from left)
Feet still intact 12/2/15
But return of the full-body, measureable shedding of skin and…
plasticky elephant skin! 
Challenges: Fall and Winter weather wreaks havoc: increased dry, flaky skin, makes skin itchy. Return of full-body, measurable shedding of skin. At night, one can palpate the heat emanating from his body and a dampness in the sheets like the oozing days of old, but not full-on ooze. More like sweating with the slight scent of ooze.
Scratch/Sleep: Compared to Summer, the frequency of scratching this Fall has increased: 0/5 to 3/5 during the day and 0/5 to 3-/5 at night, with or without erythema. Sleep is disrupted during the night again, general between 2 and 3:30 am due to scratching or being cold, and some nights he does fine. I just reapply the balms and oils and he falls right to sleep. Then I go on the computer to do more writing and researching.
Skin quality: varies from looking good with normal color to dry, flaky eczematous areas or head to shin (basically full-body) patchy erythema with dry shedding skin. This skin change can happen day to day or within 12 hours of each other. There are fewer regular scratches on skin. Tough areas are shoulder blades from night scratching.
Still TSW or just eczema now? Only time will tell, but to me, the elephant skin, full-body shedding, and ooze-related dampness indicate that TSW is not totally done; better, but not over yet. The eczematous symptoms, themselves, do seem seasonal, though, when I compare Log entries from October-December 2014 to the skin events October-December of this year. It’s incredible how similar they are, even to the time of onset! And so we march on….
Current treatment
1) Prayer and thanksgiving
2) Skin care
Moisture maintenance: daily shower or bath, pat dry, immediate application of coconut oil to face, neck, trunk and the Home Apothecary’s lemongrass balm or breezy balm made specially for Brian by Stephanie. Same moisturizers after school, at bedtime, and during the wee hours of the night.
Infection control: periodic ACV baths (apple cider vinegar with “the mother”) or microsilk tub baths; application of mupirocin on open cuts if needed; lemongrass balm
Itch/scratch management: File nails to the nub; moisturizers above; itch-b-gone spray; ice packs; accupressure points, deep breathing and CBT techniques (cognitve behavior therapy). Recently started using a humidifier in his room at night due to humidity level less than 40%, which is extremely drying to the skin
3) MTHFR/Vitamins/Supplements–inconsistently taking b complex, vitamin D3, Zinc, NAC and 1/2 tab glutathione
4) Diet–not as good as it could to be but at least drinking water regularly
TSW is a rollercoaster ride through hell, but as with all rollercoasters, it will come to an end. Thankfully, we have met some incredible people along the way, and the strength that we’ve gained and the lessons we’ve learned will be beneficial to us and to others one day. Beyond the itch, life is good.
Have a blessed Christmas and a TS-free, Happy New Year!
Rosemarie
“I will restore you to health and heal your wounds” declares the LORD.
Jeremiah 30:17
Update #1: Citizen Science and Celebrating the Perfection of Imperfection
Happy Holidays!
I can’t believe so much time has passed since my last post. Much has happened. (Much of what I learned that allowed me to do this — SolveEczema.org — came from many lessons in my own health journey, which continues. Please pardon my slowness!)
Last February, I attended the first annual conference of the Citizen Science Association, held in San Jose, California. It was a truly energizing and awesome experience! I learned so much from true pioneers in science from all walks of life.
I shared a poster presentation about my experience with SolveEczema.org, which can be downloaded from the Citizen Science Association (CSA) conference channel on F1000.com. (The F1000 site may not load the posters properly, please contact me or their webmaster if you are not able to view or download it.)
http://f1000research.com/posters/1097570
You can see what the poster looks like on the CSA channel, which is also worth browsing for other presentations:
http://f1000research.com/channels/citzsciassoc?selectedDomain=POSTERS&searchTerm=lumsdaine
Since publishing that poster, I have been trying to publish a scientific paper for peer review. One roadblock I expected, but was surprised to find even more from open source publication outlets, is that everything about this is simply too new and different. The observations and solutions of SolveEczema resulted from the engineering method, which makes use of heuristics. The goal is to most optimally solve a problem, within available resources (see my poster for more). Although I thought about how to do so for a long time myself, there is no way to overlay a traditional study design. So to editors of scientific journals, I may as well be trying to publish Sunday morning cartoons. But forcing this into a traditional format will destroy what allowed me to find a solution in the first place.
When the cause of a health condition is an infection, different people may have different symptoms, and there may be a range of symptoms and manifestations across a population of people with the same disease, but ultimately the solution involves finding the one thing in common, the infectious agent, and almost ignoring that range of differences. A traditional study design is adequate to validate the treatment: it’s possible to give everyone a single treatment, or small variations on a single treatment, and a placebo to mimic treatment for comparison.
When the cause of a health condition is environmental — as researchers basically agree the modern eczema/asthma epidemic is fundamentally — then the different symptoms people have, the range of manifestations across a population of sufferers, are the result in every case of different environmental conditions and exposures, different genetics, and different immunological states. There may be a common thread or solution, but even once that is found, actually solving the problem for every individual inherently involves problem solving in the context of each person’s exposures, genes, and health status. The differences between people for an infectious disease cause are, in some ways, almost beside the point, whereas in the environmental health cause, they are the point.
The engineering method, which uses heuristics, is well suited to finding the environmental cause in the first place, and is essential for validating the solution, because it’s not possible to validate a proposed solution through a traditional double-blind study in which every person does or uses the same exact treatment. There is no way to set up a treatment or series of steps for everyone to follow exactly and get the same results as individuals problem-solving in their own environments using a well-developed heuristic tool to do whatever it takes to get the best outcome. What is held constant in each case is not the treatment, but the aimed-for outcome (by the engineering method), which by current treatment validation paradigms (using the scientific method) isn’t considered possible to do. The scientific method, in this instance, will never be an adequate problem-solving tool to achieve what we consider cure or solution. Where a heuristic solution is applied, when a case is not resolved by properly applying the heuristic, then the heuristic (not the aimed-for outcome of problem solving) is revised or expanded to encompass the outlier circumstance.
In publishing, not only the solution and the revision of the hygiene hypothesis, plus all the novel observations I am proposing, need peer review and validation, but also the use of heuristics in disease problem solving and treatment. Using the engineering method in medical problem solving and treatment, basically, needs and deserves peer review. (As always, stay tuned.)
-A.J. Lumsdaine
P.S. Come to think of it, was this “citizen science” or was it “citizen engineering”?….