Saturday, October 25, 2014

Lactose in Medications

Many people with ME/CFS are dairy intolerant – it’s our immune system dysfunction that makes our bodies over-respond to viruses and allergens. And if you’ve never even considered food intolerances, you should because they are so common in those with ME/CFS, and finding the culprits can greatly reduce GI symptoms.

In my case, I thought the very idea was ludicrous. I was 37 when I got ME/CFS and had lived my whole life without any food intolerances or allergies (except an allergy to mollusks that I’d had my whole life) and habitually drank 3 glasses of milk a day. But when Dr. Bell, a now-retired doctor who was one of the top ME/CFS experts in the world, suggested I try eliminating dairy from my diet for a few weeks, I reluctantly agreed. I was in for a surprise.

I didn’t notice much difference in those first weeks, but when I started to add dairy back into my diet, bam! My GI symptoms flared up with a vengeance! Much as I hated to give up milk, cheese, and ice cream, I did and was surprised to find that one simple step almost completely eliminated my GI problems – excess gas, bloating, classic IBS-type alternating constipation/diarrhea – all gone. That was more than 10 years ago, and over the years I’ve learned that it’s best for me to avoid all dairy – when I start “cheating” here and there, my symptoms start to return.

There are two common sources of dairy intolerance: lactose, a sugar found in dairy products, and casein, a protein in diary products. If your problem is only lactose, then over-the-counter products like Lact-Aid (which supply the lactase enzyme your body is missing) can allow you to eat dairy products without any problems. In my case, Lact-Aid helps a little bit but doesn’t eliminate the symptoms completely, so I have guessed that both lactose and casein are a problem for me. More recently, our dietician explained that casein (along with gluten and gliadin in oats) blocks one of the methylation pathways, and that provided another reason to avoid dairy.

So, I don’t eat dairy products, and I feel a lot better – simple, right? Except that I discovered a stealthy source of lactose in my diet that I never expected – many medications, both prescription and over-the-counter – use lactose as a filler. It makes no sense to me – why on earth would pharmaceutical companies use an “inert” filler that so many people are intolerant to? But it’s true, and once I discovered this startling fact, I began to find more and more medications containing lactose. You might think the amount of lactose in a pill can’t be very much, so why worry about it, but if you are very sensitive or you take multiple pills containing lactose, then it does make a difference.

In some cases, there are alternatives that don’t contain lactose; in other cases, there are no lactose-free options. But I have found that eliminating as much of the lactose in medications as possible from my lengthy list of medications has further helped to reduce my symptoms.

Here is a partial list of medications that contain lactose and (where available) some lactose-free alternatives:
  • All birth control pills contain lactose, no exceptions (thankfully, these are tiny pills).
  • All commercial Florinef (fludrocortisone), used to treat OI, contains lactose; however, you can order lactose-free Florinef from a compounding pharmacy.
  • OTC Zyrtec and other antihistamine brands (Claritin, Zyzal, Allegra) white pills (for allergies) contain lactose, as do all the generic equivalents; however, you can buy Zyrtec or generic gel caps with no lactose. Generally, for any OTC meds containing lactose, gel caps do not.
  • Diflucan (fluconazole), generic (antifungal) – some contain lactose and some don’t. So far, we’ve discovered that those manufactured by Ivax contain lactose; those manufactured by Greenstone do not.
  • Trazodone generic (used to treat sleep dysfunction in ME/CFS) – manufactured by Qualitest contains lactose; those manufactured by Apotex do not.
  • Doryx, a new brand of doxycyline, does contain lactose; Monodox brand and certain generic brands of doxycycline do not. 
These are just the ones we’ve discovered! As you can see, sometimes, it’s hard to tell because one brand will contain lactose and another won’t and they may look very similar. So, what can you do?

For starters, call your pharmacy and tell them you are lactose intolerant. Ask the pharmacist to review your entire list of medications to check for lactose in them. I’ve found that they are usually happy to do this and then they can put a note in your file for future reference. However, you still need to remain vigilant yourself.

Many of those listed above that contain lactose, I discovered when we received a refill from the pharmacy that simply looked different than what we were used to – that’s how I first discovered that some manufacturers use lactose while others – for the same medications – don’t. So, if your pills ever look different than what you’re used to (after the pharmacist has reviewed all your meds), that is a warning sign to call and ask if the new version contains lactose. And if you get any medications from a compounding pharmacy (like low-dose naltrexone, for instance), be sure to specify “no lactose filler” because they sometimes use it, too.

The way pills look can be a clue, though it’s not foolproof. Typically, pills that contain lactose will be white tablets or caplets (or white underneath and coated with a colored surface). Gel caps and capsules are usually lactose-free. My Lyme doctor recommended a new brand of doxycycline called Doryx that was supposed to be more effective (he had coupons from the manufacturer so I could get it at low cost). I picked it up at the pharmacy and knew right away that it probably had lactose in it – they were huge white pills! I checked and confirmed they did contain lactose, and I switched back to Monodox (that I also had a coupon for) – nice, safe capsules.

Finally, you can check for yourself online. Type the name of your medication, the manufacturer, and the phrase “inactive ingredients” into any search engine, and you’ll find pages that list all of the inert ingredients in your pills, including lactose, if it’s there. For supplements, the list of inactive ingredients should be right on the label, though you can check online, too.

So, check out your list of medications, if you are lactose intolerant (and if you aren’t sure if you are, then try a trial of dairy-free diet for a few weeks). Talk to your pharmacist and be on the lookout for lactose in all of your medications, both prescription and over-the-counter. It can make a difference to your symptoms and overall well being!

Do you know of other medications containing lactose that I haven’t mentioned here?

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KipperCat said...

Could the lactose in meds be enough to thicken mucus in the nasal passages?

Sue Jackson said...

Hmmm...interesting question. Lactose doesn't directly cause increased mucus. Symptoms of lactose intolerance are typically all GI-related: cramping, bloating, gas, diarrhea. However, I suppose if you were actually allergic to dairy, then the allergic reaction could potentially cause excess mucus - maybe? Certainly it's not a common or primary response.

KipperCat said...

Thanks Sue. I've read the studies that say that dairy products don't actually increase mucus production. Then I read countless statements from individuals who say that cutting it out strongly reduced sinus pain and infections. So I tried cutting it out for a few days and my symptoms improved. Then I ate cheese one day and again two days later. The ice pick through my ethmoid sinus was a pretty strong incentive to not do that again. ;)

I guess I'll give my pharmacist a call. The methylation block alone is a good enough reason. Sometimes it feels that dealing with this illness is a full time job all by itself. sigh

Sue Jackson said...

Oh, yes, I've heard all those conflicting studies about dairy products and mucus, too! Hard to know what to believe. But - as far as I know - no one has ever suggested that the lactose in dairy is the culprit. Remember that lactose is just one small part of dairy products, so even if dairy products DO increase mucus, that doesn't mean that just lactose alone would - when they use lactose as a filler in meds, it is just lactose, no other part of dairy products.

As for dairy products blocking one of the methylation pathways, again that is NOT lactose - in that case, casein (a protein found in milk) is the culprit.

So, there are 2 separate issues here - effects of milk/dairy products generally and effects of lactose by itself. Hope that helps :)


KipperCat said...

It does, thanks!

Anonymous said...

Thank you very much for your comprehensive explanation Sue, it was much more helpful than the doctors/drug manufacturers. I didn't know that a lactose-free version of Florinef is available so I will speak to my pharmacy. The slow sodium tablets that I take with it don't contain lactose as far as I can tell. Lynne

Sue Jackson said...

Glad this post was helpful to you, Lynne! Please not that the lactose-free Florinef is not available from a regular pharmacy because no one manufactures it. You have to get it from a compounding pharmacy, where they make meds up custom, to your specifications.

Good luck!