First my hands are doing WAY better! If you read my last post and the comments you will see that I am experimenting with Joey Brown's way of healing the hands - an oil and gloves on 24/7. Some people have had problems with severe itching and blisters. I think it may come down to what stage you are in - I'm 11.5 months in and have made HUGE progress with my overall skin. But my hands take a beating 3 days a week with my job. I know not using moisturizer is a sound way to help alleviate some of the terrible symptoms of TSW for some. It definitely was a bonus for me. But my hands were to the point of a horror show! I did one whole day and night of organic vegetable shortening on my hands under nitrile gloves. Then I worked a 12 hour shift yesterday. My hands only itched when I took the gloves off. I did my best to just rub them under cold water and that helped me not to scratch at them. While working, I noted they were starting to crack open more. Before going to work and after removing the gloves, my hands looked over 50 % healed. But throughout the day I would say I went backwards another 25% - so last night upon coming home, my hands were 25% better than the day before. Not bad. So I donned the gloves and shortening again last night and changed them today - had some itching but that was relieved as soon as the gloves were put back on. I should have taken pictures, but wanted to get the gloves on right away. So pictures will wait another day or 2. I am VERY happy at the progress. Now my hands have that white wrinkled, "I've been in water way too long" look so I cut way back on the shortening and only put a thin layer on the necessary areas. But the cracks and sores are 75% cleared. Hoping 2 more days of this will bring some much needed relief!
Now for the National Eczema Association (NEA). As many of you know they have set up a task force to investigate TSA/TSW. It is an amazing opportunity for us to be heard in the realm of medical professionals. I personally wrote an email to them regarding my theory about the MTHFR gene mutation and how I believe it may factor into TSA. I received a response from the NEA and was happy to hear they will be forwarding my email to the task force. I think having them investigate TSA/TSW can lead to more studies and better awareness about the dangers of over-prescribing topical steroids. You can go to their website and just send an email explaining you are suffering with TSW and that you appreciate them looking into it further. The more they hear, the more they may do.
Here is a copy of what I wrote to them and their response:
I am responding to your recent post about developing a task force regarding topical steroid addiction. I am a registered nurse who has been going through topical steroid withdrawal for the last 11 months. I have had eczema since infancy and have been prescribed steroid creams for 30 years.
I would like to offer my opinion as to why topical steroid addiction occurs in some people and not others. I know many people who have used steroid creams for months at a time and then stopped with no withdrawal symptoms. I have been to see a Naturopathic Doctor who also has a degree in molecular and cellular biology. I expressed my theory that those suffering with topical steroid withdrawal (TSW) have something wrong within the DNA or the RNA of the skin cells. He ended up testing me for what is called the MTHFR gene mutation. The MTHFR gene is responsible for many things, but it basically balances the homocysteine levels in the body and helps turn specific B vitamins into their active forms. When there is a mutation in this gene, any number of disease processes can occur in the body. The end result is that the body cannot process certain B vitamins and therefore glutathione cannot be produced at a normal level. And homocyteine levels rise causing widespread inflammation. The glutathione is responsible for cellular repair and cleansing. If not enough is produced, the cells cannot eliminate toxins properly and repair themselves. I believe this is what people with TSW are experiencing.
I have been under treatment for this gene mutation for over 3 months now and it turned my TSW from a living nightmare into a slight nuisance. One other person with TSW told me she too was diagnosed with MTHFR gene mutation and once taking active B vitamins, her skin made a big turn around for the better. 30% of the population is estimated to have one form of this mutation. It would serve the TSW community well if we could get funding for a research study on the MTHFR gene mutation. If many more of us test positive and show significant improvement with just taking active B vitamins, then there would be no reason for this controversy to go any further. If it is the cause for TSW, then all that would be needed is a simple blood test for those patients being diagnosed with eczema. If they test positive, then their doctor knows topical steroids might be harmful to that patient.
Currently there are at least 5-6 people that I know personally just taking the active B vitamins based on my success. They are in the process of getting tested for the gene mutation. They are all showing signs of improvement that they had not seen prior to starting the vitamins.
All I ask is for your consideration into this matter. You are a big organization trying to bring awareness to the public about eczema. This could help those with TSW to find relief sooner. So many people have offered promises that such-and-such cream will help them only to find out that it does very little for our symptoms. This is not a miracle cure. But if proven right, it could change how eczema and TSW is treated.
Thank you for your time,
Tracy Scarpulla, RN, BSN
Thank you so much for sharing this information with the National Eczema Association. We are very interested in your experience and appreciate hearing from you directly.
First, I wish you well in your withdrawal; as I understand it, there is no easy way through it. Secondly, I have shared your email with our TSA Task Force. One of the next steps they would like to address is classification of the different clinical withdrawal subtypes, of which you have perhaps identified one. We have a lot more work to do to help empower people to make the best decisions possible for eczema treatment.
Please, Tracy, I hope you will stay in touch. I will keep our community updated on the Task Force work.