I started Kenalog shots in November 2011 for the hair loss. About three months ago I started to feel exhausted all the time. I went to the doctor who said I needed to see an endocrinologist. After much run around from the Health Insurance company Humana I finally got an appointment with an endocrinologist with the help of my family doctor. She ordered extensive blood work and it was found that I have a chronic condition called adrenal supression almost certainly caused by the shots for the hair loss. I have looked on the web for medical information about these side affects and found very little. There is quite a lot of information on adrenal suppression which talks about the impact of the steroid shots. Unfortunately, at that point it was too late. I now have to wait to see if the adrenal functions come back by themselves if not I may have to take cortisone for the rest of my life which is a frightening prospect. I can no longer have the shots for the hairloss and quite frankly at this point I would rather be faced with wearing wig forever than feel like I do.
I was totally moved by this girls story. I was devastated by my hair loss I simply cannot imagine if it happened at only 19 years old. Her story is one of courage, acceptance and resiliance good for her I wish her so much success. It is so encouraging to see her take her wig off an show off her new hair.
It is now March 2011 and my hair has started to grow back. Most of the new hair is white mixed with my dark hair color it is pretty hideous.
I also cannot color it therefore I had to purchase yet another wig. I was travelling to New York on business and knew I could not wear a hat all the time. This time I visited a wig shop just off Scottsdale and Shea called ………. The owner Nancy was wonderful and all fittings were done in a private room. She fitted me with a very nice mono wig another $385. She was very understanding and clearly understood the trauma a woman goes through when losing her hair.
The hair on the top and front of my head has started to grow back. The hair on the left hand side at the back is also returning but not on the right. I see the dermatologist again on the 6th of April and hopefully she can concentrate the treatment on the right hand side and hopefully it will also start to grow back. I will report back after the visit.
I am now resigned to wearing a wig or a hat through the Arizona summer which I am not looking forward to. My hair is currently how can I put it well ugly and it will be a long time before there is enough to style and color. I am very nervous about coloring as the complete loss in January was followed by a color treatment. I only use natural color from Whole Foods which does not contain any ammonia so if that is a problem then I would be incredibly nervous about using a commercial product.
I have asked my Dermatologist Nicole Madera to write a detailed piece on the treatments I have had as at this point it seems the only treatment I have had which made any difference are the cortisone shots. Costisone shots in your head every month really hurt but it beats being bald.
About 1 week after I purchased my second wig I was at a barbeque. It was chilly and there were lots of heaters around. Without realizing I was standing close to one of these heaters and when I got home my wig had literally melted on the top of my head.
I was furious there are no warnings on the wig and I could have literally caught fire. I returned to the store at Paradise Valley Mall. I encountered a very rude and insensitive sales assistant. The assistant looked at me as if I was completely stupid for not realizing that I could not stand near direct heat wearing a nylon wig. Of course I did not it’s not like I stuck my head in a fire I was standing around at a party. When I told her the assistant who had sold me the wig had not given me sufficient warning she started shouting at me saying of course she did. I asked her if she was there when her colleague sold me the wig (she was not) she still insisted that they do not sell wigs without giving the usual warnings. I then asked her why her sister shop at Cactus and Tatum did not give me any warning either she really started shouting and told me she was busy. I then asked why there was no warning on the wig and she proceeded to ignore me while starting an argument with another customer in the store who was trying on a wig without her help. I was upset and angry and decided that I could not face buying another wig any time soon. These chain store wig shops care nothing about a woman losing her hair just remember that when you walk in you are simply commission to them
When I returned from England I visited the dermatologist again for more shots. This time she did comment that things seemed to be getting worse and it was likely I would lose all my hair but it was a good sign that I still had my eyebrows. Now I was alarmed and by January 22nd not only was the back of my head completely bald but the front had large bald patches. I could no longer go out without a wig or a hat. I was trying to be brave and console myself that at least I was not losing my hair because of cancer treatment.
It was then I decided to buy another wig. This time I visited a wig shop in Paradise Valley Mall called Wigs Boutique the lady was very helpful and advised me that the shop I originally bought my wig in did not know what they were talking about and they had ruined my original wig “snipping the bangs”. It did not seem to matter that both stores were owned by the same person.
I then discovered a few things about wigs. Real hair wigs need to be styled like your own hair and since I had to suffer the inconvenience of wearing a wig I was not going to do that. Natural hair wigs are also very expensive about $700 for the ones she had in stock. I was then shown a Monofilament wig which is a very light weight wig which does not feel so heavy on your head. I purchased one of these almost another $400. This wig I liked and felt that I could wear it more as it felt much more comfortable. I got lots of compliments about my “new look” and I was finally coming to terms with the fact that I was in for a long haul.
In August of 2010 I started to notice some thinning hair. I was on the drug Humira for arthritis and as I was already having a bad reaction to the drug with elevated liver enzymes, I was taken off the drug by my rheumatologist. I had taken methrotraxate 10 years earlier and I had also experienced thinning hair therefore I immediately connected the two. I stopped taking humira in August. My hair continued to be thin but without significant loss therefore I thought I had seen the end of it.
Nothing could have prepared me for the events of the next few months. Around October that year my life became very busy with work and personal issues and my stress levels went through the roof. In November around thanksgiving things started to calm down a little and many of the issues causing the stress were under control. On Thanksgiving day 2010 I was taking a shower and noticed large clumps of hair coming off in my hands as I washed my hair. The shower bed was covered in hair. I checked the pillow I had been asleep on and noticed substantial amounts of hair on the pillow. I rushed to the bathroom and using a hand mirror checked the back of my head. I was completely bald. I was totally shocked and tried to blow dry my hair so that it covered the bald spots which was reasonably successful. After Thanksgiving I visited a dermatologist. I had suffered from alopecia 11 years earlier and cortisone shots had been very effective. The dermatologist started a course of treatment with kenalog shots in the scalp. To back track a little in Spring 2010 I had embarked on a health and fitness regime to address my arthritis problems. I was on an all organic diet and exercising regularly. I had not been this healthy physically since I was in my twenties. I was not too comfortable with the shots but I knew they worked for my previous experience and was willing to try them. I travelled to London for Christmas and although my hair was very thin and bald at the back I still looked like I had hair and I thought the worst was over.
The dermatologist did advise that it looked like I had an extreme case of alopecia and I might need to purchase a wig. I was horrified but did not want to wake up completely bald with no back up plan so on the way home from the dermatologist I purchased my first wig.
I plan on documenting the whole story with hopefully some humor to help other women and share my experience and hope. It is now March 2011 and I am still struggling with the condition. I have no medical answers and I recentlly pruchased my third wig. When men lose their hair its almost a badge of honor when women lose their hair there is an almost instant feeling of guilt as women are not supposed to lose their hair right? At this time I have no answers and I hope I will find some to share on this blog while I go through the process of hopefully one day getting my hair back.