(11/1/2015 – 11/30/2015)
(Day 611 – Day 640)
I tried vApple Cider Vinegar for my gut. Woke up like this. I tried 1/8 of a teaspoon…. It seemed to set into motion non stop flaring….
Tag Archives: Steroid
Topical Steroid Withdrawal in Children
The peer-reviewed, revised version of “A Systematic Review of Topical Steroid Withdrawal in Children Diagnosed with Eczema” replaces my original manuscript submitted to Dove Press Medical in June 2015. My “Response to Reviewers” is published here so you can see reviewers’ comments and my responses and amendments to the paper.
After some revisions in response to reviewers’ comments, they chose not to publish it because they felt “there were no articles to support the inference that topical steroid withdrawal (TSW) can occur in children” (THIS was the point of the paper: there is no research on TSW in children, and research needs to be done because children are suffering), I will publish it here and make it available to the public in the hope that someone will accept the challenge to think outside the topical steroid box and study Red Skin Syndrome/Topical Steroid Addiction and TSW in children. Prevention, early detection, and treatment ARE possible, but the blinders must first be removed.
Keep sharing your pictures and your stories! Keep educating others and save someone’s skin!
“It is God’s will that by doing good you should silence the ignorant talk of foolish men.” 1 Peter 2:15
Day 641 – Day 671 Topical Steroid Withdrawal Month 22
Report your Topical Steroid reactions to the FDA
PLEASE, PLEASE, PLEASE report to the FDA any adverse reactions you may have or have had from topical steroids, non-topical steroid medication, or other medications you have tried for eczema. (Of course you should also tell your doctor of these reactions.)
Per the FDA, “bad side effects” include new or worsening of symptoms. Sound familiar? Tell them about the burning, stinging, increased itching, redness, oozing, shedding, swelling, insomnia, temperature dysregulation, hypersensitivity, fatigue, elephant skin, thinning skin, loss of function, loss of work or school, etc. Look oat the “side effects” listed on the patient information inserts. Have you experienced any of those side effects? They need to be reported. The only way doctors know what happens after we leave the office with these medicines is if we tell them and if we report the reactions to the proper authorities.
If you have stopped using topical steroids (TS) and are going through topical steroid withdrawal (TSW), list the signs and symptoms BEFORE stopping TS, then list the signs and symptoms AFTER stopping TS. Make sure to identify before and after, even if the signs and symptoms are similar.
They need to hear from more of us! All of us!
FDA Medwatch: http://www.fda.gov/Safety/MedWatch/
Remember to save, make a copy, or take a picture of your report, and follow up with a call to the FDA line –(855) 543-3784 toll-free, or (301) 796-3400– if you do not get email confirmation that they received it.
OTHER:
Canada: Canada Vigilance Online Adverse Reaction Reporting
New Zealand: New Zealand medicines and medical device safety authority
UK: UK Yellow Card Drug Reporting Link
That’s what I did when I found out that Brian’s “worsening eczema” was not just eczema anymore. Make our kids’ suffering count for something. Report your experience. We CAN make a difference!
Thank you!
Month 22 Steroid Withdrawal
I am nearing my 2 years of withdrawal and still not done yet. I have been taking Vitamin D and Vitamin C with Iron tablets for around 2 months now but things still aren’t running smoothly. I eat a mostly vegan diet with plenty of fruit and veg but there is always room for improvement. I’m waiting for summer to try going mostly raw vegan again as that is when all the nice fruits will be around.
We went for a little getaway on the 16th to the Lake District. I never in a million years thought I’d ever have the enthusiasm and motivation for going on a walking holiday, but I guess these things change. Anyway, no sooner had we arrived I could see the tell-tale signs of infection emerging. For goodness sake. I’m not allowed to enjoy anything am I?! What was more annoying was that we were blessed with dry, sunny days which were perfect for going for walks, but no, I ended up being mostly confined to the cottage. It was a stunningly twee little place though so I was glad we were able to make the most of staying there.
I did however force myself to go out a few times, even though I looked like the undead. My camera has been lovely to me though and you can’t even see that there is anything awry.
I used my drying out and tea tree oil method but it didn’t seem to work as amazingly as it had before, though it did appear to clear the majority. I booked in an appointment to see a doctor on the Thursday evening of our return who prescribed me antibiotics as a standby option. I can tell you, I’m bloody glad I did. Overnight it returned with a mean vengeance. Everything was yellow, swollen and I felt feverish and yuck. So I’m back on the unwanted antibiotics.
The following Monday I had a follow-up appointment with my derm nurse at the hospital. She essentially told me that she was drawing blanks with what other treatments I could have as I have tried them all. Ciclosporin isn’t working as effectively as it should be any more and our goals of treatment have changed anyway, seeing as I keep having constant infections again. She wants me to push the idea of biologic treatment and has issued me a fast-track appointment with my consultant derm. I wasn’t supposed to see her until August but now have an appointment for early May. Biologics are new in terms of treatment for AD individuals, and I was actually given the opportunity to go on them over a year ago, but back then I was fed up of being a guinea pig. I could kick myself now, had I known I would regress again. Ho hum.
But yes, unless things get remarkably better with my natural solutions, it looks like I may be forced to take that route. I have been doing a lot of reading and research into Dupilumab, a biologic which is currently being trialed, and have seen good stuff so far.
So yep, this is where I’m currently at.
Oh, and it hardly seems worth telling because it was so minuscule but I also had a small bout of herpeticum earlier this week that originated around my eye. Fingers crossed it is now lessening in severity as after a few days of treatment it disappears. At least something is going right!
I Have Eczema
Day 671 – Day 701 Topical Steroid Withdrawal Month 23
(1/1/2016 – 1/31/2016)
(Day 672 – Day 701)
Pretty much nonstop flare. EVERYTHING sets me off. ALL food introductions in the smallest amount cause the full body rash. Nothing makes sense.
Pretty much nonstop flare. EVERYTHING sets me off. ALL food introductions in the smallest amount cause the full body rash. Nothing makes sense.
Day 702 – Day 730 Topical Steroid Withdrawal Month 24
(2/1/2016 – 2/29/2016)
(Day 702 – Day 730)
More of the effing same. I had some calm moments when I was VERY sick, then as soon as I started getting better my skin went to s*** again. More of hope and crushed hope. Same old same.
More of the effing same. I had some calm moments when I was VERY sick, then as soon as I started getting better my skin went to s*** again. More of hope and crushed hope. Same old same.
23.5 Months Steroid Withdrawal Ramble
Hey guys, never fear – I’m still alive!
I’m nearing the 2 year mark! Things still aren’t going brilliantly, I’m still having flares and such and still taking Ciclosporin but overall I don’t have too much to complain about as I’ve been able to go to work and live life a bit. I believe it has been nearly 2 months since my last infection so that’s pretty great going for me.
I have a dermatology appointment at the end of the month in which I was going to inquire about the Dupilumab trials/ other biologic treatment, but I’m still unsure as of what to do. I do however feel I need intervention in order to carry on with my job and such. My goal this year is to be working a different job with full time hours. I’m fed up of being ill and I want to get on with my life’s ambitions, of which have had to be put on hold because of being poorly. Saying this, I’m not sure what my career goals are. I’ve been aiming towards working in an office environment as I think that will be better for my health, but all in all I’m at a loss as to what I want to actually do. I’d love to get into copy writing or some such but not too sure what the preferred route is into such an occupation.
My diet could be cleaner, as I say every time I write a post. I do my best to eat well and reduce my dairy intake, however in the last few months I’ve put on a little bit of weight which I must do my best to shift. Exercising vigorously has still been somewhat of an issue though when I have endured flares so I just do what I can… which admittedly isn’t a lot.
At the moment my face is doing alright, though it was far better yesterday. My arms and chest need a little bit of work and the backs of my knees have signs of irritation but overall I seem to be doing alright. I’ve been mostly pale this week which is good news.
Also my little space on the internet is about to hit a quarter of a million views. That is quite frankly, insane! Thanks to everyone who visits and I’m so happy from reading your comments and emails that I have been able to help so many of you to know that you’re not alone, and to even show people that they may not just have ‘eczema’ any more, you may be suffering from red skin syndrome/ topical steroid addiction. But I will apologise for being distant. I think I’m just going through a bit of a blogging rut, which many people do, but it has been nice to take time out and reflect.
I hope everyone is doing well!
I Have Eczema
