Happy New Year 2017

6 Jan

Hello to my subscribers and new readers of my blog! Happy New Year! I am snowed in right now, (and in the south that means there has been a prediction of snow, but not necessarily actual snow), so I thought I’d take a few minutes to check in with all y’all, especially my fellow XLH’ers and wish you all the best in 2017.

It’s been several months since I’ve written a post and I’ll give you an update. Last year, I was accepted into the adult drug trial for KRN-23. For those of you who aren’t familiar with the trial, it is a drug trial to study the effectiveness of the drug KRN-23 on children and adults with X-linked hypophosphatemia. I am in the third phase of the trials, which is for adults. During the first six months, I did not know if I was receiving the actual drug or a placebo…top secret! Only the pharmacist knew and whoever studied my lab results whenever my blood was drawn, which was (and is) quite a lot! During the second six months of the study, I began receiving the actual drug FOR SURE.

I can say this for certain, too…my broken foot, actually feet, are feeling much better. Oh sure, there are days when I stand too much and my feet hurt at the end of the day, but all in all, that is where I have felt the biggest difference. (I knew my left foot had a fracture, but I didn’t know about the other one until I was told by the study coordinator that the doctors were closely following both feet due to fractures. I thought my right foot just hurt a lot. Go figure.) I’ve also had an increase in energy. That’s been a good thing.

I’m very excited about the promising results for children from this drug, which is an injection, by the way. I sort of doubt that there are many XLH’ers who are afraid of needles, since we often get stuck, poked and prodded  from early on if we were “fortunate” enough to be diagnosed as children. I may dread the needles, depending on who’s getting ready to stick me, but I’m not afraid. Not to brag, but I do have great veins that are easy to find and stick a needle into.

The only side effect I seem to have experienced is restless legs. And what an aggravation it is! The study doctor, seeing that I was borderline anemic, suggested that I take an iron pill daily, since anemia can also cause restless legs. I have faithfully done that and my restless leg “syndrome” has not abated. In fact, I’ve decided that the day after I have my monthly injection, I may as well take the day off from work because it will be a sleepless night that first night. I feel like I could do kickboxing if I were younger, my legs are so restless.

And yes, I’ve tried the “Ivory soap in the bed” trick that some people swear by for restless leg syndrome, and it has not worked. I will say, though, when I tried it, my feet and legs smelled very nice in the mornings.

I’m crossing my fingers that this drug will get approved and will become available for XLH’ers soon. I’m worried about insurance, of course. Even though my former XLH treatment (a combination of calcitriol and phosphorous) was the ONLY valid treatment prior to this drug, my insurance refused to cover the calcitriol. So, who knows what insurance companies will say about this new treatment, which will, no doubt, be expensive. And who knows what will happen to those people who, perhaps for the first time, were able to get health insurance for their pre-existing condition due to the changes in the insurance laws. That all might change, too. There are some promising and also scary things on the horizon in 2017. I’m crossing my fingers. And praying especially for my “tribe,” i.e., other XLH’ers.

I have made no resolutions for this year. I can’t seem to follow through with those. But I do plan to continue doing the things I enjoy doing, like playing music and working and one of my newer hobbies, rescuing cast iron cookware from thrift shops and restoring them to usable condition, while extolling the virtues of Teflon-free cooking. I’ve baked about 7 Bundt cakes in the last two months in my restored cast iron Bundt pan and I might even bake one while I’m “snowed in” this weekend. Feel free to send me your favorite Bundt cake recipes. Which I will look at…if I don’t lose internet. And electricity.

Good thing I still have some leftover cake from the last one I baked, just in case!

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Copyright 2017, S. G. Hunter and Banjogrlldiaries

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6 Responses to “Happy New Year 2017”

  1. DeAnne Haustveit January 6, 2017 at 11:17 pm #

    I’ve only made monkey bread in our bundt pan but it’s most delicious!

    I hope the treatments for the XLH comes through! It will help so many!

    • banjogrrldiaries January 6, 2017 at 11:27 pm #

      Thank you for your comments and thanks for reading! I haven’t made monkey bread yet but it sounds like something I should try! Happy New Year!

  2. Jeannette January 6, 2017 at 11:57 pm #

    Hi and happy new year to you to. My name i Jeannette im 33 and I’m from Denmark. I am born with the xlh to. I just saw your blog today. A girl in an xlh group on Facebook linked to your blog. I have been readin and reading all day and it has been a pleasure, I really like your way of writing with ironi and Wisdom. So it has been a really good day today 😊 I feel lucky I found your blog. Have a nice weekend, and hope the snow dosent keep you locket away to long. I’m looking so much forward to following your blog.
    Kindly regards jeannette

    • banjogrrldiaries February 5, 2017 at 8:37 pm #

      Thank you, Jeannette, for your kind comments and for following my blog!

  3. Becky Mock January 7, 2017 at 11:36 am #

    Thanks for the update on your experiences with the trial. Are you seeing Dr. Weber at Duke? I have the same problems with my feet With higher levels of pain and fatigue these days. I doubt Medicare will ever cover the new treatment, so I’m SOL on that, but hopeful for the next generation. Best of luck to you in 2017!

    • banjogrrldiaries February 5, 2017 at 8:40 pm #

      Yes, Dr. Weber runs the study. Best of luck also to you, Becky! Let’s catch up soon!

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