It's really not what you want to find out after you've been taking it for a month and a half. :(
I've been dairy-free (and gluten-free) for over a year and half in the hopes that it would help improve our fertility. I wrote about the encouraging changes on my chart as a result of that diet change here. My chart is still more or less the same since then. I get a couple additional green stamps post-peak in cycles where I use HCG.
Anyway, I had read—just before starting LDN—that sometimes lactose is used as a filler when the drug is prepared. It didn't concern me at the time because I assumed at least one of the following would be true: 1) perhaps they don't use lactose as often these days since lactose intolerance seems to be fairly common, 2) the pharmacy would ask me if I could tolerate lactose before filling the prescription, or 3) the pill bottle or accompanying info sheet would inform me that lactose was an ingredient. Food labels are quite good at labeling lactose; why wouldn't a drug label be the same? I just figured I would find out somehow and didn't give it another thought.
Yesterday I was searching for a website I could send to my NaPro doc explaining how one might compound LDN in her own kitchen in case he had not heard of this possibility. (I still hadn't asked him for this.) One website I was reading again mentioned lactose as a filler, which made me start to wonder if my LDN had lactose in it. I went to check the info sheet that usually comes along with a prescription (listing common side effects, etc.) and realized I never received one. Thinking I was being paranoid, I thought it wouldn't hurt to call Kub.at's and find out for sure. Judging by the employee's reaction to my question, I'm guessing not a lot of people ask about this. He confirmed, yes, there is lactose in my LDN. :( I asked if they had lactose-free LDN available. After some searching, he said that they did have it, but that my doctor would have to specifically order lactose-free LDN for me. (Really? I can't just say, "Please send me the lactose-free kind?")
Since it would be faster to have a new prescription filled locally (as opposed to mailed from Kub.at's), I started to call local pharmacies asking if they had lactose-free naltrexone. I started with a chain store pharmacy which I've used in the past. The pharmacist almost chuckled when I said "naltrexone" because he said it's been ages since he has dispensed that drug. Not a good sign... He said he could order naltrexone but since he's at a chain store, he can't choose the manufacturer. (The chain store just ships him what they have in stock, which could be from a handful of different manufacturers.) So there's no way to guarantee that the drug he receives is lactose-free. I could tell he was frustrated he couldn't help, but he did give me names of two other non-chain pharmacies in town that would have more freedom in ordering. I called one of them, and the only naltrexone they carry is lactose-free. :) And the cost for approximately one year's supply (compounded by me) is less than what I am paying now for one MONTH'S supply (compounded by the pharmacy)! I know, I know—I should have arranged all of this sooner.
Now I just need to wait to hear back from my NaPro doc that he agrees to let me compound LDN myself...
If only I had known I was going to be ingesting lactose and thus breaking my dairy-free diet, I would have splurged for something much more satisfying like some good chocolate**!! Or a mocha! Oh, how I miss mocha...
**Fear not, I am not totally deprived of chocolate. Our grocery store sells some dairy-free chocolate. :)
AHHHHH!!! You're kidding me!!!!
ReplyDeleteI JUST started getting mine compounded again because I had some raging PMS the past few cycles, so I figured my home bathroom compounding pharmacy isn't quite cutting it. So, I payed like $30 for a 15-day supply (my new insurance only gives me a 15-day supply on meds I don't get filled on the hospital premises... um, but I think this is discrimination since they don't compound!!)
I'm so frustrated by this!! And I've noticed some acne coming back and wondering why it was...
TCIE
What??? Why on earth would they use lactose as a filler when like 85% of the world's population is lactose intolerant??? Seriously???? Sorry to use so much punctuation lol but as a fellow GF lady, this kind of stuff drives me nuts! And they didn't even tell you. Nice. Glad you found a solution and that your charts seem okay.
ReplyDeleteLadies, thanks for your support. :) I'm super frustrated, too. I had just received a new month's supply a few days before I learned about the lactose issue...
ReplyDeleteIt looks like I'm going to be stuck with the lactose-containing stuff for a while...probably several weeks yet (partially because I'll be on vacation). I asked my family practice NaPro doc, who responds quickly to e-mails, if he would take over prescribing the LDN completely (including the lactose-free request), and he refused because he's never prescribed LDN for PMS before and isn't comfortable with it. I was kind of shocked by that; I was under the impression LDN and PMS is a basic NaPro protocol and has been for years (decades even). Unfortunately, it's not an option for me to go back to the ob/gyn who originally prescribed the LDN. I'm starting the process to become a patient at PPVI, but until they receive all my medical records, it sounds like there won't be any prescribing going on. *sigh*
Now that more NaPro docs (Dr. Hilgers included) are recommending diet changes to their patients--including no dairy--I wonder if they know about this lactose issue?