Comment by Jen on February 18, 2016 at 8:55pm

Here is my advice on recovering from alopecia when you are in the early stages. This is what I know now that I wish I had known 20 years ago:

Antibiotics are very dangerous for people who are under stress and genetically predisposed to develop autoimmunity. Your whole immune system is centered in the gut. The intestines are the skin of your insides- it’s so connected. What happens there will be reflected in your skin on the outside. I wish an emphasis on rebuilding my intestinal ecosystem had been part of my initial therapy. I think probiotics in liquid form are the best. The Inner Eco an excellent product. Yogurt does not cut it.

Vegetarian diets and low fat diets can be very bad. People recovering from autoimmunity do best on high fat/low sugar diets with an emphasis on whole foods. If you are having trouble eating at all this could also be contributing. You must take care of yourself and eat. They didn’t know when I was diagnosed, but the genes for celiac are super close to the genes for Alopecia. I wish someone had told me to stop eating wheat and all wheat products. I know that gluten-free seems like a fad but for people with alopecia it is not. Some people have seen complete reversal with a gluten free diet.

http://www.livestrong.com/article/426524-wheat-intolerance-alopecia...

I would also take a good multi-vitamin- look for something made in the USA, I like Slice of Life gummies. Biotin and zinc have been shown to help with skin and hair problems.

Stress is the worst!!!!!!! I wish now that I had taken a month off of school and calmed down. There is a huge feedback loop between how the brain feels and how the gut feels and once you get sad and stressed you have to break this loop. Whether it’s with natural calming remedies like the Natural Calm (take it before bed), yoga, baths, aromatherapy, the ocean, meditation or prescription drugs. Don’t be ashamed. Sometimes we need to take vacation, time and/or drugs when stress is affecting us so adversely. If going to a therapist might help you, that’s another avenue to consider. Collect tons of hugs right now! You deserve them!!! Get good sleep!

Sunshine. It is our natural instinct to cover up the hair loss as it is so embarrassing. If you can make time to get a sun and AIR on the area that is shedding that would be really beneficial. The one time I was able to grow my hair back, I was taking sun on my head every morning. It’s the best source of vitamin D which has also been shown to improve/reduce hair loss.

DO NOT BE ALL-CONSUMED WITH INTERNET RESEARCH. There is so much half-assed/bad information out there. There are so many people selling things that don’t work. Try to limit the amount of time you spend on this. It’s not helpful to obsess. You have to be calm and positive and the Internet doesn’t help.

Comment by Jen on February 18, 2016 at 8:56pm

AND

Keep in mind that while a lot of people on this forum are excited about JAK inhibitors, including me, they are not FDA approved for Alopecia and they seem to be fairly dangerous internally, 4 people DIED during the RA trials.

I posted this information and links on another thread: 

When you look at the safety profile on the drug the percentage of people who got cancers/malignancies during the RA trials, that was 1.9%.  (The most common included 24 lung cancers, 19 breast cancers, 10 lymphomas, and 6 gastric carcinomas. Two more lymphomas turned up after the trials.) 

http://www.xeljanzhcp.com/malignancies 

When you look at serious infections during the trial (meaning hospitalization from infection) it's 6.5%

http://www.xeljanzhcp.com/serious-infections

So the math on that is 8.4 percent of people get cancer or are hospitalized with infection from exposure to this drug during the trial phase time period. I don't know how long the trials were, but probably not more than a year. And it should be noted that it would be a particularly cruel kind of irony to grow your hair back with this stuff and then loose it again during cancer treatment. Cancer that was caused by the drug.

I don't want to tell other people what to do, but I would not take it internally, especially not long term. When you stop taking them you lose the hair, so they may not be appropriate for Alopecia. My understanding of JAK inhibitors is that they turn off the signaling mechanism when a cell is asking the immune system to destroy it for the good of the whole. The problem is when we've turned off that signal systemically, we are going to ignore that signal coming from cancerous and infected cells that really should be destroyed by the immune system.

 

Comment by Nat on February 21, 2016 at 12:38am

Thank you so much x

Comment by Sharalexis on March 2, 2016 at 11:34pm

I have been on every diet known to man and I find that exercise and managing anxiety are the best ways to cope.

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