The journey of losing my hair began about ten years ago when I was diagnosed with AERD (Aspirin Exacerbated Respiratory Disease). Not a lot of research had been done into the disease, but one treatment was rising in acclaim: aspirin desensitization. So, I spent two days in the allergist's office, being desensitized to aspirin. Seeing as I can be sent into anaphylactic shock with any type of NSAID (including aspirin), it was an interesting process to say the least as my eyes slowly began swelling shut, my lungs started closing off, and my nose was a fountain. However, I made it through (while addressing my Christmas cards) and I have been taking aspirin daily for years. It definitely helps with some of the side effects, but it's not perfect. And honestly, taking that much aspirin for that many years is hard on the lining of my stomach, and it acts as a blood thinner so I pray that I don't scrape any body part or brush my teeth too hard.
When I was fed up with the continued daily symptoms and the chronic sinus infections, I decided to look online to see what I could find. I found a Facebook group run by a woman who has some association with the AERD center at Brigham and Women's Hospital in Boston. It was a gold mine of information, and I was brought to tears as I read similar stories, struggles and feelings from other sufferers of the disease. On the site, people are always talking about the most recent research and drugs, and soon on the scene was a biologic called Dupixent which was originally developed to help eczema but was shown to reduce nasal polyps and help with asthma as well. The FDA approved it for all three conditions, and for those of us with AERD (who suffer from both polyps and asthma), it was being called a wonder drug. People on it regained their sense of smell (due to the shrinking of the polyps) almost instantly after their first injection, and most everyone said it was a game changer. No longer did we need to wake up in the morning, feeling like we had the flu or like we had been run over by a bus in the middle of the night.
So when I found a new allergist here in Michigan, Dr. Dass recommended Dupixent on my first visit, and I could hardly wait to start. It took a couple of weeks to get the insurance company to approve it (each shot, given twice a month, costs several thousand dollars), but once approved, it was a go.
I couldn't believe the difference in my life. I didn't feel sick anymore, and in six months time, I only had two sinus infections. And although I didn't care about regaining my sense of smell, it did indeed return partially (which was really all I could handle after not having a SOS for ten years). It was a miracle drug.
I started giving myself the injections twice a month in May, but in October I noticed something very strange. When I would get out the shower, hair was hanging onto my shoulders. I would sweep behind my head with my hand, and pull out fistfuls of hair. And these weren't broken strands--each one had a root.
I started to freak out, but John told me it was probably just stress. The girls said the same. Glo had lost chunks of hair when she was stuck with a bad companion on her mission, and Hannah lost probably half of her hair in Ecuador because of the water. I tried to ignore it, but after three weeks, there was hair everywhere, and I knew something was wrong.
I went back to Dr. Dass for my six month follow up. She asked me how I was feeling and was surprised to hear that I had had sinus infections (my ENT treated me for those). She then did a breathing test on me and wasn't impressed with the results at all. She was talking about all these things, but when there was a break in the conversation, I brought up the fact that my hair was falling out. She checked my scalp and sure enough, she could see that my usual crazy-thick hair was indeed thinning. She told me that she would call the physician liaison for Dupixent that day and get back with me.
The next day she called and told me that Dupixent does in fact cause hair loss. This isn't something that Dupixent publishes in any of the information, but there have been enough women who have lost their hair that it has been qualified as a symptom. Dr. Dass was in shock. Because she has so many patients with AERD, she regularly prescribes Dupixent. She put me in touch with a dermatologist.
I ended up getting in to see the dermatologist the next day (because of a cancellation), and she did nothing to dissuade my stress. She was a very brusque (aka rude) Arabic doctor who basically sees me as the dumbest person walking around on planet Earth. However, she confirmed my fears. My hair is falling out. Dr. Dass had already called her and told her what was happening with the Dupixent, so she went into full-boar mode, telling me everything I needed to start.
- Vitamin D every day
- 5000 mcg of Biotin every day
- Aldactone once a day (a diuretic)
- Rogaine (minoxidil) twice a day
- Ketoconazole shampoo
- prenatal vitamins
Of course, all of this is in addition to what I take daily for AERD (Xyzal, Singulair, Trelegy inhaler, Xhance nasal steroids, and 1300 mg of aspirin).
She was throwing out instructions like feed to chickens. I finally had to pull out my phone to start taking notes. Only wash my hair EVERY THREE DAYS, but when I do, shampoo with the Ketoconazole shampoo, leave it on my head for an hour and then rinse it out and shampoo/condition like normal. And the Rogaine--apply it twice a day, let it dry for an hour, and then style my hair BUT DON'T LET THE WET ROGAINE TOUCH ANYTHING LIKE MY PILLOW BECAUSE IF MY FACE TOUCHES THE PILLOW, I'LL GET HAIR GROWING ON MY FACE. And because the Aldactone is a diuretic, take it in the morning so I won't be peeing all night. And take the prenatal vitamin with dinner so that it is better absorbed.
Well, the Rogaine lasted two weeks, and then I scrapped it. I already feel badly enough about the bald patches that are appearing on my scalp. I don't need to see them twice a day and then leave myself looking like a moused-up dog. Ketoconazole is used to treat athlete's foot, and I didn't think I had a fungal infection on my head, so I didn't use that either. And the diuretic is used to wash one's system of extra testosterone, but I had had blood tests done, and my hormone levels were normal, so I didn't take it either.
When I went back to Dr. Dass two weeks later, she did another breathing test on me (off the Dupixent), and my breathing was actually BETTER off of it. And God bless her because she sat down with me for a good 30 minutes, explaining the real reason behind all those treatments. With both the diuretic and the shampoo, they have weird side effects of promoting hair growth. She said the Rogaine was low on the list of what I needed to do. And she recommended that I buy a supplement online called Nutrafol--four green capsules a day.
I told her again that I sure hoped the Dupixent was causing the hair loss and not some strange other factor like spending hours cleaning the temple with some pretty hard-core cleaning products. She told me that talking to the physician liaison for Dupixent, she could tell that he was not surprised at all to hear about my hair loss, and that she was SURE it was the cause. And then she told me that now when she talks to women about Dupixent, she tells them the same two things she told me--it can cause redness of your eyes and redness at the injection site--but now she tells EVERYONE that they can lose their hair as well. It makes me wonder what I would have decided if she had known and told me in the beginning. Would I still have risked it?
For all that I have gone through in my life (losing a parent, being abused, my husband losing his job, being fired as a seminary teacher), nothing can compare to the stress I feel about losing my hair. As I said to the dermatologist and Dr. Dass, I'm not a fancy person. I've been using the same purse for the last ten years. I don't wear makeup, and I wear the exact same pair of earrings everyday. But one thing I care about? My hair. It's the one thing in my arsenal that actually helps me look attractive, and when (not if, because it's a done deal) I lose my hair, it will be a struggle to even look at myself in the mirror.
So, both doctors are hopeful that the hair will come back. There is a study out there of a man who lost his hair on Dupixent, and as soon as he went off, it began growing back. The problem is that the life cycle of hair is on a 3-6 month loop. So when it falls out, it will take 3-6 months just to begin growing back. So, I look to the next few months as finally getting to a point where I'm going to have to shave my head. I can barely cover my scalp as it is now. And that's only if it does actually begin to grow back. I also looked at wigs and "toppers" the other night--they are expensive, but they could help me feel like I could at least go out in public.
I'm not much for priesthood blessings. Honestly, I have such chronic health problems that I gave up long ago believing in them because nothing ever changed. John would try and bless me that things would improve but it took some serious creativity to imagine that the words in the blessing were coming to pass. It's not his fault or mine--it's just the nature of my physical health. But two weeks ago, after crying myself to sleep most nights, I couldn't bear the stress anymore, and I asked John for a blessing. I think I needed it more for comfort than for a miracle. And then before he got on a plane last week, in front of the terminal, he gave me another blessing. The blessings have brought a measure of peace and resignation at least. It'll all be okay, even if my hair doesn't grow back. I know there are much worse problems I could have, but this is definitely not a problem I would choose.
We took our family pictures last week, and in some kind of tender mercy I was able to make my hair look normal. It gave me some kind of peace to know that there is one final picture out there of me with my hair. I fasted this past weekend for a miracle, but as I have learned through several years of pain, things go according to the Lord's will. I wish I had the faith to accept it perfectly, but with my hair, I'm still in begging mode. I will believe though that it IS possible.
Dr. Dass has started me on a new biologic that has no recorded cases of hair loss. I must admit that I feel significantly better than I did last month off of Dupixent, so that gives me some hope that I can have a normal life again. That's a blessing, I know. But I still burst out crying during random times during the day, thinking about the rest of my hair falling out. I sure hope that someday I can look back on this and just laugh.
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