Here I am at the 28 month mark and I haven't posted anything on here in over a month. I'm enjoying my blog break way too much and psychologically it has been quite hard to return to the blog and "TSW World" now that I am feeling so much better.
I kept myself busy last month doing voluntary work in the community. As well as lifting my spirits considerably, it also had the added benefit of getting some sun on my skin. The sun is just starting to peek through here in the UK and the benefits to my skin have been enormous. It's not quite T-Shirt weather yet, but strangely enough, the little bit of diffused sunlight I have received on my face seems to have benefited by whole body. My inner arms, which had been a problem area, cleared up, even though I hadn't exposed the skin to the sun directly. Has anyone else had this happen, or am I just odd?
Anyway...time for a picture update!
The period from October until February had been a stagnant phase and I believe that this was directly related to the winter weather. I truly believe that as Summer progresses, my skin will heal totally and I will not need to use any creams at all at this point. It remains to be seen whether the TSW rash will return in October again, but I try not to dwell on that too much.
I've noticed a few newsworthy updates in the TSW world since I've been on my blog break. The first is the ITSAN survey, which is very exciting as it aims to give patients a steroid usage score based on the usage and potency of creams used over their lifetime. The survey is worth doing, although I did find it quite hard and would recommend using a calculator! Once Itsan have 500 results, they can collate the scores into something meaningful and hopefully start to see patterns that relate to TSW healing times. The survey can be found on the forum homepage.
Another interesting news item is the development of Dr Fukaya's Clofibrate ointment, which has finally been made available to the general public after a test period. Check out Dr Fukaya's website for more details about how the ointment works. He also has a video on Youtube explaining the science behind it. If any blog readers have tried the ointment, please let me know how you got on with it.
I'm off again, as my computer is very laggy and driving me crazy! Hopefully I will get a new one soon.
Happy healing folks and don't stop believing!
22 comments:
I have just found out about tsw and am on my 9th day my face is oozing clear fluid I am bed bound I know I am strong and can beat this. Please can you give me some tips that might help I would really appreciate it there is beautiful sunshine today in the uk and I hope one day I can enjoy it. My skin has become sunlight sensitive on my face and neck I come out in ozing hives.
Hi,
The thing about sunlight is to introduce it at the right time. day 9 is way too early and you would be best avoiding the bright sunshine until you are about 6 months into withdrawals and your skin can handle it.
Please feel free to search my blog for tips, as it is written in time order so you will be able to see what my skin was like when it was at the same point as yours.
The itsan forum is great and you will find lots of helpful people on there who can help you through this journey. It may seem hard this early in, but this will get better and this is so much better than being addicted to steroids.
Best wishes and love. X
Glad to see you blogging Louise and looking so very healthy and well! :)
Hugs x
Fantastic news! You look fab!
And I agree, although I'm only in month three I can see and feel difference in the skin thanks to the sun - even my arms which I haven't exposed to the sun. So odd :)
xx Jo
I'm 19 months along here with only a few spots left (hands were the worst, but not bad anymore). Like you, I've recently been getting outside to do some yard work in the Sun a few days each week.
So my hands started to clear nicely .. figured that was Sun-related. But also noticed the last remaining spots on my body (foot, thigh) are clearing even though they received no Sun.
Odd, yep! But we're fine it, right?! :-)
Congrats Louise! Here's wishing you a WONDERFUL Summer!!!
Brilliant to see, Louise :D x
You are looking quite smooth, white, and happy! I'm so glad that this month has brought continued healing for you! I'll bet you are right and will just keeping getting better as the season progresses! :)
Great to see that you are doing so well Louise .Also glad that the winter is coming to an end . Wishing you have a great summer and that the healing caries on , your looking great . xx
Great to see that you are doing so well Louise .Also glad that the winter is coming to an end . Wishing you have a great summer and that the healing caries on , your looking great . xx
Lovely louise! U have almost done therein.
For how long u used it on ur face? 28months is a long tym but u did it hugs** :)
Hi Louise,
I have just come across your blog and wondered if you would consider trying our products?
I am fortunate enough to work for an all natural skin care company named Salcura, who manufactures natural products for skin conditions such as Eczema, Dermatitis, Psoriasis and even Acne.
We only focus our products around natural essential oils mixed with a combination of natural stablisers and water.
At Salcura we understand the frustration of using chemically based products that have harsh additives which over time end up being more harmful than useful.
We are currently looking for bloggers who blog about natural products, skin care regimes or steroid withdrawals to test our products and see how they can help.
We would love to get in further contact with you to see what your thoughts are, so if you would like to know more about us please email us at info@salcura.co.uk or alternatively you can check out our website at www.salcuraskincare.com
Kind regards,
Nicola
Hi Louise,
You look great! I'm feeling close to the end of my journey as well. So excited for all of us!!
I agree about the sunlight. If you're oozing, it's asking for trouble to expose your skin to sunlight. I found it just drew ooze out of my skin more.
Anyway, glad you updated us with your status.
Megan
Lovely, Louise! So glad you're doing so well! :)
Hi Louise,
Have you ever tried using Vitamin E ointment to your face ?
I tried vitamin E several years ago, but found that it irritated my skin.
Hi Louise my name is Lauren I am 22 years old.
I recently just found out I have Topical Steroid addiction.
Here is my story :
About a year ago I started getting little red bumps on the sides of my face especially in winter and they wernt pimples or anything. My skin type has always been super dry (especiallly on my nose it peels and flakes). I tried so many moisturizers and the peeling just wouldn't go away and neither were these new Red bumps.
My mom had this cream in her cupboard she was prescribed by her doctor for eczema for her hands which she only applys about once a week. (betamethasone valerate 0.1 cream)
It was her idea one day to decide to put it on my face (her thinking I had eczema)...
And it immediately went away. So then I thought it was some miracle cream and my mom told me to use it as a moisturizer.
So I literally was spreading this cream all over my face for the past year every couple of days. I thought it was my cure for my dry peeling skin and these red bumps.
For the past 6 months I didn't understand why I kept breaking out in a rash everytime I would shower. My face would be Red and blotchy (not raised) and looked like Red blotchy dry patches of skin. Also my skin would get so Red like it's sunburnt.
So I immediately thought I was allergic to something in the water or my skin was super sensitive to the extreme cold climates we have here in Canada. I thought this because the redness would go away after an hour and my skin would return to normal. I recently started noticing broken capillaries starting to develop on my nose and cheeks... which I thought was hereditary since my mom and dad both have them ( my dad has rosacea).
Recently I went on a 4 day trip and I forgot my "miracle cream " at home and I didn't think anything of it. Soon after I took a shower my face broke out so red and then it looked like tiny little zit/hives covering every centimeter on my face. My skin was burning so bad i wanted to cry. I was so confused. Then I finally put 2 and 2 together and realized I wasn't having an allergic reaction but I was having withdrawl symptoms from not using my cream. But my withdrawal symptoms believe to be more of a Steroid induced rosacea which is why it looks more "zit like".
So as soon as I got home I went to research online and came across your blog. I also came across many other people's blogs and couldn't believe people also made the same mistake as me by smothering it all over their faces. Except it seems like everyone has used it way longer than I have on my face.
I honestly don't know what to do. I am in the process of starting my career in life to be a paramedic. I have 2 job interviews next week and I decided to try to slowly use the cream less and less. My face starts burning and starts getting those bumps after 5 days of not using it. I am using vasaline on my face every night and also smothering vitamin e cream. Recently its starting to itch more than burn.
My makeup is showing up all patchy on my face and looks brutal to go out in public. My face is pretty much permanently blotchy and red now after not using the cream for 3 days now and seems to worsen after I shower everyday. Also it is starting to feel swollen around my cheeks and lips and I have a "tingling sensation". I haven't slept much in the past 3 days as well ( Hot and cold sweats & EXTREME anxiety)
I printed off pages from the internet showing my parents what I found online and they think I'm crazy and the information I found is untrue. They decided to make me a doctors appointment and say he will be able to fix my face or prescribe me something for it to go away. I'm just afraid he isn't going to even know what Topical steroid addiction and withdrawal is from what everyone keeps saying on the Web.
Anyways, if you have ANY sort of advice for me that would be great. If I only used it for a year will that lessen the time of the withdrawal symptoms ?
-Lauren
Hi Lauren,
There are many reputable studies on TSW that have appeared in medical publications. You could print these off to share with your doctors and family.
Your usage time is quite short, but the cam you used was strong, so I don't know how long your withdrawal can take. 18 months to 2 years is average for most people.
My best advice is to join the itsan.org forum.. There are lots of people on there who are in a similar situation and who can share what worked best for them.
There is a Japanese dr called Dr mototsugu Fukaya who is an expert on TSW he is trialling an ointment called clofibrate ointment and many are reporting good results. Maybe you could investigate it further. I've seen some impressive photos on people's blogs who have tried it.
Hi Louise,
You don't know how relieved I am to have found your blog. I am a 24 year old woman and I've had severe eczema my entire life. It's covered all my flexural surfaces and now is starting to extend onto my extensural surfaces. The worst part about it all, is that my face is blowing up with eczema too. I used to only have problems with it on my forehead and around my mouth. Now, it's all over my face. It's absolutely devastating and has not helped with my self esteem at all. I have literally spent thousands of dollars on remedies and nothing has seemed to help. I have been on steroids my entire life. I don't like that it thins out my skin and makes hair grow but it's the only thing that has given me some sort of benefit.
I feel like I can't leave my apartment because the skin is so dry, red and peeling. It's extremely distressing. Do you have any thoughts on what I should do? I've been to so many doctors and none of them seem to really understand or care. I am currently a medical student and want to go into dermatology so I can help people like me. It's such a common and debilitating disease that no one seems to really give much thought.
I have also tried cutting steroids out of my life completely but then my skin just oozes and it's so extremely painful. I just had to go back on them because I interact with lots of patients in the hospital and I don't want to scare anyone off making them think i have some sort of disease. How can patients trust me when I can't even take care of my own health? I feel trapped because I know I have to get off these steroids some day but I seriously don't have the time and possibly the willpower to do it! Please help!
-Liz
Hi Louise,
You don't know how relieved I am to have found your blog. I am a 24 year old woman and I've had severe eczema my entire life. It's covered all my flexural surfaces and now is starting to extend onto my extensural surfaces. The worst part about it all, is that my face is blowing up with eczema too. I used to only have problems with it on my forehead and around my mouth. Now, it's all over my face. It's absolutely devastating and has not helped with my self esteem at all. I have literally spent thousands of dollars on remedies and nothing has seemed to help. I have been on steroids my entire life. I don't like that it thins out my skin and makes hair grow but it's the only thing that has given me some sort of benefit.
I feel like I can't leave my apartment because the skin is so dry, red and peeling. It's extremely distressing. Do you have any thoughts on what I should do? I've been to so many doctors and none of them seem to really understand or care. I am currently a medical student and want to go into dermatology so I can help people like me. It's such a common and debilitating disease that no one seems to really give much thought.
I have also tried cutting steroids out of my life completely but then my skin just oozes and it's so extremely painful. I just had to go back on them because I interact with lots of patients in the hospital and I don't want to scare anyone off making them think i have some sort of disease. How can patients trust me when I can't even take care of my own health? I feel trapped because I know I have to get off these steroids some day but I seriously don't have the time and possibly the willpower to do it! Please help!
-Liz
Hi Liz,
What an awful situation to be in. It is so difficult for those of us going through TSW and trying to hold down a job.
Please consider joining the forum at ITSAN.org. There are lots of people on there going through withdrawals from all walks of life, many hold down full time jobs. They may be able to offer you some tips on how they got through it.
Come and join us on the forum and join in the discussion. You will be made most welcome. X
Hi Louise,
Do you think that the nasal spray impedes your TSWANA progress?
My boy has very sensitive nose and we really don't have a choice but to use nasal steriod sprays. Not sure how this will affect him though.
Thanks!
Veronica
Hi Veronica,
There are different schools of thought on this subject.
Dr Fukaya, the Japanese TSW expert, thinks that inhaled steroids and sprays won't affect TSW healing.
Dr Rapaport, on the other hand, advises keeping away from all steroids if possible.
As you may have seen on my blog, I use a steroid inhaler regularly for my asthma, as I cannot stop using it, or my chest gets tight.
I used to use a nasal inhaler for allergies, but I don't anymore. I just use regular antihistamines. Maybe it would be a good idea to ask your doctor about non steroid alternatives to the nasal spray?
All the best to you and your little one x
Post a Comment